October 31, 2017
Happy Halloween!!!!
Well, he did it! Dressed as Iron Man, and wearing the cool gloves but not the scary mask, Bradley trekked through several blocks of lit doorways where he loved knocking on the doors or just walking up and saying “Hi-lo!” He couldn’t quite handle saying “Trick or Treat” but we did get a few “ick” sounds, which was exciting. And every time he offered “Thank you” by sign with a little bit of a verbal “thank you” too. He worked super hard verbally. He worked super hard walking, going farther than ever, we were thrilled with his stamina! He made it up and down almost eight streets, that’s impressive! And then he worked super hard with his fine motor skills. You see he loved his gloves, we couldn’t believe he kept them on, but he did and he tried to take offered candy from hands or pick it up out of bowls. Working that pincer grasp is not for the faint of heart to be sure, but add in gloves and, oh goodness! Tough stuff indeed!
I watched my little boy work his way along the sidewalk, sometimes hesitant because of transitions with curbs, sometimes just perceived because of the light. He was concentrating pretty hard, had his little tongue out as he worked...a sure sign. Turns out, trick or treating is really hard work. If the costume isn’t the biggest issue, the walking, the hand coordination is another, beyond that is all the talking. Just so much talking! And if you’re a sensitive kiddo that gets overwhelmed and overrun by emotion, this evening’s events definitely puts him through the wringer. We haven’t even discussed all the different costumes that people were wearing. When it was all said and done and Bradley wanted up to be carried back to the car, he wanted to lay his head down but there were still too many interesting sights to view to turn off his visual curiousity.
If he missed his sisters he gave no indication. He was accepting of what he had in that moment, and what he had were mom and dad. Together, the three of us walked the streets and helped him try to say: “Trick or Treat” and made sure he signed “Thank you.” Bradley didn’t see a puppy he didn’t want to know, a baby he didn’t gravitate towards, or a person his size that he dodn’t want to be friends with. All in all, not a bad night.
As for his sisters, they might have a tougher road ahead than they thought. He was willing to mosey along without them. And yes mosey; his pace, not him trying to keep up with them. In terms of their future with him, they are going to have to find ways to connect with him if they want to be a big part of his life. Any part of his life. I think Bradley is showing that he will adapt, life is going to keep moving and he will move with it too.
It’s almost as if he is more than fully aware that their paths may lead far away from his, that he may not get to see them every day. And as a resilient little boy that has a stubborn streak that refuses to break...he takes all this in stride. Accepting what is right before him and not looking for what is lost or missing. At times I worry that he just doesn’t know, as if he isn’t aware they are gone, and should that be the case will he forget them when they go off to College and then head off into their lives? So I worry.
But then he lights up like a Christmas tree when he walked out of his classroom today and hugged Sydney. He hadn’t seen her since she left with me yesterday. And he clung to her, his cheek against hers as she spoiled him and carried him to the car. And when we picked up Madison and got home, he reached for her and sat on her lap on the couch watching Masha while Madison took a wee nap. Since then he has followed her non-stop, like her second shadow. Currently, they are at the kitchen table while she helps him eat a snack, and it’s not a popsicle. Smiles!
He cries when they leave him, like when they physically get out of a car, or he doesn’t get to walk into a house with them, but he doesn’t do too bad when they leave the house. And if he leaves them behind at the house, it doesn’t bother him a bit. He likes to be the one with the adventure. Don’t we all.
I think this month’s journey has been about really seeing this family and watching and noticing all the ways that the dynamics are changing. My children are growing up, all of them. My daughters are learning how to juggle more complications: friends, school, relationships. Madison is stepping into the world of dating, and at the same time she is flirting with driving, she is also taking on more responsibility for the care of her brother. And that is huge. Sydney is starting to take on more of her brother too, stepping into that role of baby sitter that all older siblings eventually take on, whether they like it or not. Each of them is starting to juggle the demands of life, and the desires of being with their brother and their family vs. wanting to be with everyone else too. And Bradley, Bradley is finding his place in this world, in his class, with friends, and in his family. He is making choices and deciding parts of his daily life he wasn’t interested in before, and it’s truly a beautiful thing to watch unfold. With a little more time together, I like to think that he and the girls will cement the foundation that the rest of their lives will stand on, that their relationship tomorrow will be stronger for what they can create in these little moments. I can only hope that whenever and where ever they go, no matter for how long, that when they return his arms will open and he will reach for them and love them with as much joy as he loves them now. That even if his brain falters from time to time, love for them will never fade, that somehow he will hold onto all the memories of them that tie them to his heart and mind.
Every October is an incredible journey, not much different from month to month really, but taking the time to document, to talk about our life for a whole month, that creates an incredible journey in our house. In a world of perfection, admitting how imperfect our life is can be daunting, but also incredibly freeing. There is no perfection here, and yet, if one were to take the time to look close -there is a certain amount of perfection in our imperfect life and family. Our life works, and though there may be some negatives, there is this truth: I would not change this life for anything. I know all the way down to my soul that I have been given the greatest gifts by being wife to this man and mom to these three kids...all the animals I’m not so sure about...but why quibble over details, especially furry ones.
For those who have joined me on this month long journey, thank you so much. I couldn’t do it without you. To my family, your patience was surprisingly great this time. And Eric, you read it all, you quietly go about your business and I never know whether you think it rubbish or poetry, but you remain a fan and still love me through it all. Thanks for that. Thank you for loving me, thank you for choosing me and becoming my better half twenty years ago, come November 8th. You are my greatest Blessing and through you we created Us, and three truly amazing kids. Thank you, thank you for all of it and more! I do love you!
Goodbye October. So closes my 31 For 21 Blog Challenge for Acceptance and Awareness of Down syndrome. It’s always the most amazing journey, thanks for riding along!
Wednesday, November 1, 2017
Monday, October 30, 2017
Separated Halloween
October 30, 2017
Well, we knew this day was coming, and I have to admit it took a lot longer to get here than I thought, so for that we have been lucky. I have to admit that I am surprised that it is happening at Halloween, but then really, what better day for it. Suddenly, both girls have plans with friends for Halloween. For the first time, they each have been invited to Halloween parties at their friend’s houses. I don’t know how we got this far where this hasn’t happened before, but it hasn’t because we’ve never said that there would be no Halloween parties, they just never worked out before.
Last year, Madison almost wsan’t with us because she was supposed to go to a party, but a girl who had been known to bully her showed up too, so Madison left. It’s funny, I thought that that would be our last year of having Madison with us, I knew she wanted parties even as she talked about just staying home to hand out candy. I knew she was coming to the end of enjoying walking around with Bradley and Sydney.
I wasn’t ready for Sydney.
This year Sydney is going to her friend’s for a party and trick or treating. We’ll pick her up around 9, and just like that the whole world changes. Eric and I will take Bradley alone for a few houses, but odds are good that without the girls, the crowds will overwhelm him completely and he won’t last out there for very long. I am guessing an early return home for the three of us.
Considering I am not much for crowds, I am still finding this kind of sad. My girls are growing up and moving on, just as they should be. I think I expected one and then the other, nothing prepared me for both of them at once. And granted, it’s not like they are moving out tomorrow, but the truth is, it won’t be long now. Madison is a Junior next year, Sydney a Freshman. And once one heads off to College, the other is a mere two years behind. Eric and I will barely be recovering from the first one leaving before the second one takes off next. And as hard as that will be for us, what will happen for Bradley? Eric and I have always known that someday it would just be us and Bradley because the girls will move on and build their own lives away from us. I know it will be difficult for me to let them go; but when I think about their brother, I know that he will have a hard time too. At this point, I don’t know how much he will understand and worse, how much he will remember of them.
Yesterday, he spent almost an hour in Madison’s room playing with her. She was making him laugh from the belly, full laughs that make a listener just smile and giggle as well. And I can’t help but wonder if the memory of that, of those special moments, will be mine, and Dads’s and hers. And if in fact the girls head out into the world right after High School, how much will they interact with Bradley and how drastically will that change their relationships, and how much will he remember them?
Maybe I’ll get lucky and they’ll stay close, maybe they will surprise me and miss him, maybe they’ll work hard to create a life that includes their brother because they want that, because they see that he needs it and wants it too. Maybe despite the fighting that they do with each other, they will want to keep this family, long after the pathways are spread as life continues to live and grow as it is meant.
Either way, tomorrow is our first separately celebrated Halloween. It will be exceedingly strange; fitting for Halloween, but I certainly hope that my kiddos will each enjoy their night and come home having had as much fun as possible and definitely safe and sound.
Sometimes Bradley isn’t truly the Challenge. Sometimes just living this life as these kids grow beyond being kids, that’s just as big a challenge for sure.
Closing out the 30th Blog in this 31 For 21 Challenge for Acceptance and Awareness for Down syndrome! Happy Monday to all, and to all a good night!
Well, we knew this day was coming, and I have to admit it took a lot longer to get here than I thought, so for that we have been lucky. I have to admit that I am surprised that it is happening at Halloween, but then really, what better day for it. Suddenly, both girls have plans with friends for Halloween. For the first time, they each have been invited to Halloween parties at their friend’s houses. I don’t know how we got this far where this hasn’t happened before, but it hasn’t because we’ve never said that there would be no Halloween parties, they just never worked out before.
Last year, Madison almost wsan’t with us because she was supposed to go to a party, but a girl who had been known to bully her showed up too, so Madison left. It’s funny, I thought that that would be our last year of having Madison with us, I knew she wanted parties even as she talked about just staying home to hand out candy. I knew she was coming to the end of enjoying walking around with Bradley and Sydney.
I wasn’t ready for Sydney.
This year Sydney is going to her friend’s for a party and trick or treating. We’ll pick her up around 9, and just like that the whole world changes. Eric and I will take Bradley alone for a few houses, but odds are good that without the girls, the crowds will overwhelm him completely and he won’t last out there for very long. I am guessing an early return home for the three of us.
Considering I am not much for crowds, I am still finding this kind of sad. My girls are growing up and moving on, just as they should be. I think I expected one and then the other, nothing prepared me for both of them at once. And granted, it’s not like they are moving out tomorrow, but the truth is, it won’t be long now. Madison is a Junior next year, Sydney a Freshman. And once one heads off to College, the other is a mere two years behind. Eric and I will barely be recovering from the first one leaving before the second one takes off next. And as hard as that will be for us, what will happen for Bradley? Eric and I have always known that someday it would just be us and Bradley because the girls will move on and build their own lives away from us. I know it will be difficult for me to let them go; but when I think about their brother, I know that he will have a hard time too. At this point, I don’t know how much he will understand and worse, how much he will remember of them.
Yesterday, he spent almost an hour in Madison’s room playing with her. She was making him laugh from the belly, full laughs that make a listener just smile and giggle as well. And I can’t help but wonder if the memory of that, of those special moments, will be mine, and Dads’s and hers. And if in fact the girls head out into the world right after High School, how much will they interact with Bradley and how drastically will that change their relationships, and how much will he remember them?
Maybe I’ll get lucky and they’ll stay close, maybe they will surprise me and miss him, maybe they’ll work hard to create a life that includes their brother because they want that, because they see that he needs it and wants it too. Maybe despite the fighting that they do with each other, they will want to keep this family, long after the pathways are spread as life continues to live and grow as it is meant.
Either way, tomorrow is our first separately celebrated Halloween. It will be exceedingly strange; fitting for Halloween, but I certainly hope that my kiddos will each enjoy their night and come home having had as much fun as possible and definitely safe and sound.
Sometimes Bradley isn’t truly the Challenge. Sometimes just living this life as these kids grow beyond being kids, that’s just as big a challenge for sure.
Closing out the 30th Blog in this 31 For 21 Challenge for Acceptance and Awareness for Down syndrome! Happy Monday to all, and to all a good night!
Sunday, October 29, 2017
No Really, It’s Just a Haircut!
October 29, 2017
Bradley thought that 3:30 in the morning would be a good time to start our day and was a bit confused that I seemed to not agree with his determined start of the day. But after some coaxing, he finally closed his eyes and went back to sleep until seven. At seven he came bounding into our room and for a few minutes it really seemed like he might settle down and go back to sleep in the middle of our bed. But I was very wrong. He was completely done with this whole sleep experiment, and he and I started our day. Once he had his medicine, he agreed that he was hungry and when I offered Eggo waffles, he decided that those were a good plan, and ate them up.
When he went back to the table later he would eat a Fiber One Chocolate Chip bar. He thought he needed to follow with a popsicle, we didn’t agree of course, and he tried to compromise with pudding, but he just really wanted a popsicle, so pudding wouldn’t do. He finally left the kitchen rather than finish the pudding. That’ll show me!
In the afternoon, we took Bradley to get a Halloween costume, because better late than never definitely applies in our house. He’s going to be Iron Man, because he’s a popular size and that’s about all that was left out there. I couldn’t find Curious George or George Pig anywhere, and when I could find it, not in Bradley’s size. So, Iron Man it is. And that’s not a bad choice, Iron Man’s a pretty good superhero, so he’ll be a fun costume for Bradley.
Then we went to get him a new case for his IPad, because my son thought it would be very cool to grab the bowl that his sister had full of water on the counter, and pour it all over his IPad and the counter. Perhaps he learned a new word or two from his frustrated mom; but hey, puddles in the kitchen are never pretty or fun.
Back home again for meds and pizza. My little man loves his pizza, when all else fails he will get excited by pizza every time. Tonight was no different, except tonight he was also so very tired. Maybe he didn’t make the driving part of the drive, but he rode the drive and it sure was tough on his little body. So maybe he wanted to eat more, but as he starts to get tired, he starts to yawn, his body starts to do weird things...sometimes it seems that his esophagus starts to attack a bit, so as he starts to swallow more, yawn more, I cut off his food intake and tried to encourage the whole area to calm down.
It was off to a bath then, but before we turned on the water, he got a quick haircut. In case you didn’t know, he absolutely hates haircuts. He screams bloody murder, like to the point that I wonder that we haven’t had a visitor knocking on our door already. Enough that we have made mention to the neighbors situated within earshot that he hates haircuts, you know just in case. So he’s yelling “Done!” Not even bothering with signs, just flat out yelling “Done!” And “Nooo!” Heehee, he is really verbally funny during his fight, but when it is all said and done, he looks really, really cute. We have tried everything with him and these haircuts: more often, less often, quieter clippers, smaller, more powerful for quicker, at the shops, with clippers, with scissors, holding an IPad, not holding one, with one of his favorite toys, one of the shops toys, we’d go to a special shop, but there isn’t one around here. Turns out, my son just hates haircuts.
So as we pull him out of the bath we realize it is only 6:30... way too early for bedtime. Only, Bradley had other ideas and crashed out not ten minutes later. Ugh!!! Drag, no rest for the wicked! So we take him back for meds figuring it will wake him up a bit...barely woke up for it. So he came back to the couch with Dad, sitting with Dad and his puppy, and immediately went back to sleep. Sigh... And so it goes. He is not one to keep awake when he is tired nor is he one to get to sleep when he is not willing to sleep...this little guy runs the ship in this house, he just occasionally chooses to let his schedule and plans match mine and make me think I am controlling anything other than medicine, diapering and meal prep. That boy controls every minute I do or do not sleep. Holy smokes, that was quite the revelation to make for sure. Haha.
All in all, a great weekend, a looong weekend, and now a quiet night at our house. I’m pretty sure Bradley will call a meeting a little later, but when he goes to school, I’ll drop Sydney and come home for a much needed nap before heading to Agoura Hills and the music shop to hopefully get Sydney’s Horn fixed. Wish me luck, um on basically all of the above.
The last Sunday in the 31 For 21 Blog Challenge, Acceptance and Awareness because it’s just an extra chromosome for goodness sake!!
Bradley thought that 3:30 in the morning would be a good time to start our day and was a bit confused that I seemed to not agree with his determined start of the day. But after some coaxing, he finally closed his eyes and went back to sleep until seven. At seven he came bounding into our room and for a few minutes it really seemed like he might settle down and go back to sleep in the middle of our bed. But I was very wrong. He was completely done with this whole sleep experiment, and he and I started our day. Once he had his medicine, he agreed that he was hungry and when I offered Eggo waffles, he decided that those were a good plan, and ate them up.
When he went back to the table later he would eat a Fiber One Chocolate Chip bar. He thought he needed to follow with a popsicle, we didn’t agree of course, and he tried to compromise with pudding, but he just really wanted a popsicle, so pudding wouldn’t do. He finally left the kitchen rather than finish the pudding. That’ll show me!
In the afternoon, we took Bradley to get a Halloween costume, because better late than never definitely applies in our house. He’s going to be Iron Man, because he’s a popular size and that’s about all that was left out there. I couldn’t find Curious George or George Pig anywhere, and when I could find it, not in Bradley’s size. So, Iron Man it is. And that’s not a bad choice, Iron Man’s a pretty good superhero, so he’ll be a fun costume for Bradley.
Then we went to get him a new case for his IPad, because my son thought it would be very cool to grab the bowl that his sister had full of water on the counter, and pour it all over his IPad and the counter. Perhaps he learned a new word or two from his frustrated mom; but hey, puddles in the kitchen are never pretty or fun.
Back home again for meds and pizza. My little man loves his pizza, when all else fails he will get excited by pizza every time. Tonight was no different, except tonight he was also so very tired. Maybe he didn’t make the driving part of the drive, but he rode the drive and it sure was tough on his little body. So maybe he wanted to eat more, but as he starts to get tired, he starts to yawn, his body starts to do weird things...sometimes it seems that his esophagus starts to attack a bit, so as he starts to swallow more, yawn more, I cut off his food intake and tried to encourage the whole area to calm down.
It was off to a bath then, but before we turned on the water, he got a quick haircut. In case you didn’t know, he absolutely hates haircuts. He screams bloody murder, like to the point that I wonder that we haven’t had a visitor knocking on our door already. Enough that we have made mention to the neighbors situated within earshot that he hates haircuts, you know just in case. So he’s yelling “Done!” Not even bothering with signs, just flat out yelling “Done!” And “Nooo!” Heehee, he is really verbally funny during his fight, but when it is all said and done, he looks really, really cute. We have tried everything with him and these haircuts: more often, less often, quieter clippers, smaller, more powerful for quicker, at the shops, with clippers, with scissors, holding an IPad, not holding one, with one of his favorite toys, one of the shops toys, we’d go to a special shop, but there isn’t one around here. Turns out, my son just hates haircuts.
So as we pull him out of the bath we realize it is only 6:30... way too early for bedtime. Only, Bradley had other ideas and crashed out not ten minutes later. Ugh!!! Drag, no rest for the wicked! So we take him back for meds figuring it will wake him up a bit...barely woke up for it. So he came back to the couch with Dad, sitting with Dad and his puppy, and immediately went back to sleep. Sigh... And so it goes. He is not one to keep awake when he is tired nor is he one to get to sleep when he is not willing to sleep...this little guy runs the ship in this house, he just occasionally chooses to let his schedule and plans match mine and make me think I am controlling anything other than medicine, diapering and meal prep. That boy controls every minute I do or do not sleep. Holy smokes, that was quite the revelation to make for sure. Haha.
All in all, a great weekend, a looong weekend, and now a quiet night at our house. I’m pretty sure Bradley will call a meeting a little later, but when he goes to school, I’ll drop Sydney and come home for a much needed nap before heading to Agoura Hills and the music shop to hopefully get Sydney’s Horn fixed. Wish me luck, um on basically all of the above.
The last Sunday in the 31 For 21 Blog Challenge, Acceptance and Awareness because it’s just an extra chromosome for goodness sake!!
Saturday, October 28, 2017
Busy Saturday
Ocrober 28, 2017
It’s the last Saturday in October and we spent half of it on the road. In the last twenty four hours we got to see the family on my dad’s side that live here in the Southern California area. It’s not common and we enjoyed it while we had it. Then we got to spend a few hours with my bestie who is Auntie to my kiddos. Hard not to be happy about that. She can sign with my oldest and help my younger girl tune her French Horn and then in between she can play a game with Bradley to lift his fifty pounds into hugs as he transfers from one person to another while giving us full belly laughs. What more can you ask for really? Not much, if you are asking for anything more than a beg for extra time, then you truly aren’t living the best moments you can have in your life.
We’re home now, and while Eric and I are sort of watching the baseball game, mostly we’re sitting on the couch stretched out and just loving the chance ot stretch out. Bradley is happily settled on his Dad’s lap, watching his movie and loving the comfort of being close to daddy. There is not a lot of cuddle time when you are in a car seat; so this is the equivalent of stretching out on the couch for him.
After sitting in each other’s pockets, and breathing the same air as their parents, the girls have disappeared into their rooms to decompress from the drives and the constant lack of solo space and time. I don’t particularly like traffic, but when they aren’t fighting tooth and nail, I don’t mind it so much because I get them in a confined space for the few minutes that we can laugh and talk when they aren’t asleep. It’s making an Arnold Palmer out of straight up lemons. I was good with lemonade, but the girls are newly converted to the half and half.
I know they give me the eyeroll when I point out things like the Matterhorn at Disney and the Hollywood sign, but I think that someday they will remember these eye rolling moments and they will do so fondly. They’ll laugh as they pass the Matterhorn and and they’ll tell their kids about how their mom used to always point it out to them, or perhaps they won’t mention their part in the eyeroll event and simply smile in memory and just point out the sites. I think they might mention that they mostly slept through the Hollywood sign sightings because those usually happened early, early mornings on the way to Volleyball tournaments or late afternoon or evening after them when they just were too sleepy to care too much about it. But their sleepy brains will somehow trigger those memories and they’ll pass that stuff along, probably while laughing at their mom.
I do think that there will be other memories that they'll conjure that will be truly eyeroll type memories, I’m hoping they remember some of my most favorite puns, because I have had some epics. And my lame jokes... must pass my favorites down the line. Madison just shakes her head, but I think that deep down she is a goofball like her mom and that Sydney is just as much a lover of geeky puns nad lame jokes as her mom. So you know, life is good!
And Bradley? I want him to remember me, to remember the feel of being loved, I want him to remember our routines and how we live our day to day lives that means he is happy and safe. I want him to see our pictures and name us all, knowing us for all time. Those are the memories that I want him to carry with him at all times.
So as Bradley starts to get sleepy, I’ll close this out and get him ready for bed. Yes, he basically took two naps today, but cooped up in a car or sleeping in a different bed, I know he’s exhausted and in need of the peace of sleeping in his own bed again. Time to get him ready for that. And the sooner he goes to his lovely bed the sooner I can reunite with my own bed, who I know has been missing me!
Have a great Saturday night all. Keeping the family moving and on the run adds the definite challenge to the 31 For 21 Challenge for Down syndrome Awareness.
It’s the last Saturday in October and we spent half of it on the road. In the last twenty four hours we got to see the family on my dad’s side that live here in the Southern California area. It’s not common and we enjoyed it while we had it. Then we got to spend a few hours with my bestie who is Auntie to my kiddos. Hard not to be happy about that. She can sign with my oldest and help my younger girl tune her French Horn and then in between she can play a game with Bradley to lift his fifty pounds into hugs as he transfers from one person to another while giving us full belly laughs. What more can you ask for really? Not much, if you are asking for anything more than a beg for extra time, then you truly aren’t living the best moments you can have in your life.
We’re home now, and while Eric and I are sort of watching the baseball game, mostly we’re sitting on the couch stretched out and just loving the chance ot stretch out. Bradley is happily settled on his Dad’s lap, watching his movie and loving the comfort of being close to daddy. There is not a lot of cuddle time when you are in a car seat; so this is the equivalent of stretching out on the couch for him.
After sitting in each other’s pockets, and breathing the same air as their parents, the girls have disappeared into their rooms to decompress from the drives and the constant lack of solo space and time. I don’t particularly like traffic, but when they aren’t fighting tooth and nail, I don’t mind it so much because I get them in a confined space for the few minutes that we can laugh and talk when they aren’t asleep. It’s making an Arnold Palmer out of straight up lemons. I was good with lemonade, but the girls are newly converted to the half and half.
I know they give me the eyeroll when I point out things like the Matterhorn at Disney and the Hollywood sign, but I think that someday they will remember these eye rolling moments and they will do so fondly. They’ll laugh as they pass the Matterhorn and and they’ll tell their kids about how their mom used to always point it out to them, or perhaps they won’t mention their part in the eyeroll event and simply smile in memory and just point out the sites. I think they might mention that they mostly slept through the Hollywood sign sightings because those usually happened early, early mornings on the way to Volleyball tournaments or late afternoon or evening after them when they just were too sleepy to care too much about it. But their sleepy brains will somehow trigger those memories and they’ll pass that stuff along, probably while laughing at their mom.
I do think that there will be other memories that they'll conjure that will be truly eyeroll type memories, I’m hoping they remember some of my most favorite puns, because I have had some epics. And my lame jokes... must pass my favorites down the line. Madison just shakes her head, but I think that deep down she is a goofball like her mom and that Sydney is just as much a lover of geeky puns nad lame jokes as her mom. So you know, life is good!
And Bradley? I want him to remember me, to remember the feel of being loved, I want him to remember our routines and how we live our day to day lives that means he is happy and safe. I want him to see our pictures and name us all, knowing us for all time. Those are the memories that I want him to carry with him at all times.
So as Bradley starts to get sleepy, I’ll close this out and get him ready for bed. Yes, he basically took two naps today, but cooped up in a car or sleeping in a different bed, I know he’s exhausted and in need of the peace of sleeping in his own bed again. Time to get him ready for that. And the sooner he goes to his lovely bed the sooner I can reunite with my own bed, who I know has been missing me!
Have a great Saturday night all. Keeping the family moving and on the run adds the definite challenge to the 31 For 21 Challenge for Down syndrome Awareness.
Being There
October 27, 2017
Who doesn’t love the kind of quality, family,squabbling time that comes from sitting in traffic for five and a half hours. There’s the endless strategic positioning for space and elbow room, the inevitable tears, sometimes just one, sometimes Bradley joins in, possibly the driver thinks about it...it’s like a rite of passage. The back seat will get blissfully quiet as they all three fall asleep for a few hours and in those moments, parents in the front silently beg the traffic to part like the Red Sea and grant fast (oh and safe) passage to our destination before they wake up and the loving banter (brawling) begins in the back seat all over again. At some point, Bradley isn’t tired of his movie, he’s tired of sitting and wants to enjoy acting out all that he can with very exaggerated arms movements and quite a bit of contact with the kid stuck in the middle for the trip. Usually, more tears will threaten and possibly fall...the inevitability of this is practically a written rule somewhere.
And so, five nad half hours later...we arrived at our destination. Last night was my nephew’s last Home football game for the regular season. Play-off football is probably on the menu, but whether any will be at home is the question mark. Besides, it was the Senior Game, so it was special. And we got there...we just missed the ceremony, and most of the first quarter, and absolutely all of the JV game that was right before it that my other nephew played in. So, my grand plan to watch two of my nephews play last night failed miserably. I did get to see the Senior play, so at least there was that. And for him, it was what I hope is a great moment and memory as all of his family from his dad’s side were all in attendance.
I don’t know if he even remembers, but when we had to move from San Diego, I told him that I would see him play his Senior year. I told him then I would try to see one more game for football and baseball before he graduated. Thanks to my sweet husband, and my pseudo-patient children, we made the trip and saw him play. Promises made and kept...my little clan helped me do that and I feel really good about it, and am truly grateful to them.
We were hoping to get a chance to see the family before heading north again, but first we’re tapping into the musical brains to try to help with problems with my French Horn players Horn. I wish I understood instruments and could help; but alas, my brilliance (cough, cough, wink, wink) lies in other areas.
Oh, and then there was the three screws that embedded in my back tire. That’s sweet fun there. So while we had our lovely auntie here creating musical magic, Dad took the car over to fix that tire...so we’ll be a little later leaving out that we had initially planned. And so it goes, the life of chaos that swirls around this family.
A lot of fuss for a short time; I know, but I think that sometimes it is certainly the short time events, the precious moments that can’t be replaced that are truly worth the time spent in traffic, the hassle to pack up a family with the extras that come with what our Bradley’s needs in order to be there in that moment. At the end of the day, when the lights go out and there is no more minutes to be had in my life, I can only pray that I can be remembered for being there every time I could. That despite the distance in miles or circumstance, I found a way to be there. Sadly, the distance is the greatest obstacle, but now my kids have their own moments that I want to be there for them, proud of their achievements. They need to know I was there for them, that their Dad made all the sacrifices he could to be there as much as he can...they need to look back and have those moments and know that somehow we found ways through the chaos that often followed their brother’s life. I can only hope that they will never doubt that they are loved and that they matter, and as they grow older, I hope that they will fully understand why finding ways to be a part of their cousins lives in these special; if not numerous ways, somehow matters in the best ways. That they will continue to grow into the kind of people that grace the lives of others, and offer the gifts of love that are paid for from the heart and not the pocket.
I wish that I would be the one to teach them this, but I know my teacher is a 46 inch tall little boy that holds a hurricane in his hand and the essence of joy in the spark of his eyes. How his soul wraps around mine in quiet confidence as it teaches me what love truly is about. Sometimes, the best love is being there, he taught me that, and so I make promises that I work hard to keep and somehow my family tries to find the way to just be there. My little clan is getting really good about learning to just Be There.
Who doesn’t love the kind of quality, family,
And so, five nad half hours later...we arrived at our destination. Last night was my nephew’s last Home football game for the regular season. Play-off football is probably on the menu, but whether any will be at home is the question mark. Besides, it was the Senior Game, so it was special. And we got there...we just missed the ceremony, and most of the first quarter, and absolutely all of the JV game that was right before it that my other nephew played in. So, my grand plan to watch two of my nephews play last night failed miserably. I did get to see the Senior play, so at least there was that. And for him, it was what I hope is a great moment and memory as all of his family from his dad’s side were all in attendance.
I don’t know if he even remembers, but when we had to move from San Diego, I told him that I would see him play his Senior year. I told him then I would try to see one more game for football and baseball before he graduated. Thanks to my sweet husband, and my pseudo-patient children, we made the trip and saw him play. Promises made and kept...my little clan helped me do that and I feel really good about it, and am truly grateful to them.
We were hoping to get a chance to see the family before heading north again, but first we’re tapping into the musical brains to try to help with problems with my French Horn players Horn. I wish I understood instruments and could help; but alas, my brilliance (cough, cough, wink, wink) lies in other areas.
Oh, and then there was the three screws that embedded in my back tire. That’s sweet fun there. So while we had our lovely auntie here creating musical magic, Dad took the car over to fix that tire...so we’ll be a little later leaving out that we had initially planned. And so it goes, the life of chaos that swirls around this family.
A lot of fuss for a short time; I know, but I think that sometimes it is certainly the short time events, the precious moments that can’t be replaced that are truly worth the time spent in traffic, the hassle to pack up a family with the extras that come with what our Bradley’s needs in order to be there in that moment. At the end of the day, when the lights go out and there is no more minutes to be had in my life, I can only pray that I can be remembered for being there every time I could. That despite the distance in miles or circumstance, I found a way to be there. Sadly, the distance is the greatest obstacle, but now my kids have their own moments that I want to be there for them, proud of their achievements. They need to know I was there for them, that their Dad made all the sacrifices he could to be there as much as he can...they need to look back and have those moments and know that somehow we found ways through the chaos that often followed their brother’s life. I can only hope that they will never doubt that they are loved and that they matter, and as they grow older, I hope that they will fully understand why finding ways to be a part of their cousins lives in these special; if not numerous ways, somehow matters in the best ways. That they will continue to grow into the kind of people that grace the lives of others, and offer the gifts of love that are paid for from the heart and not the pocket.
I wish that I would be the one to teach them this, but I know my teacher is a 46 inch tall little boy that holds a hurricane in his hand and the essence of joy in the spark of his eyes. How his soul wraps around mine in quiet confidence as it teaches me what love truly is about. Sometimes, the best love is being there, he taught me that, and so I make promises that I work hard to keep and somehow my family tries to find the way to just be there. My little clan is getting really good about learning to just Be There.
Thursday, October 26, 2017
A Good Physical
October 26, 2017
Last Thursday of the 31 For 21 Challenge. And Bradley has had a pretty good 24 hours. When I took Sydney to the information meeting last night, turns out my little boy looked at Dad, then touched his chest and then signed and tried to say “go.” I was ecstatic that he did it, happy for Dad that he got to be there to see it, and I admit to being a little bummed to have missed it myself. But Dad misses stuff while he’s at work, so he deserved to witness something special first. :-).
Bradley had his physical today. My little guy is 46 and a 1/2 inches tall and 49 pounds, 15 ounces. On his growth chart he is showing a really pretty and nicely aligned arc. He’s still 10th percentile, which is hard for me to fathom if you really want to know. I look at him in comparison to his peers in his class and I think he’s pretty big. But then I see that him standing next to another kiddo that is only older than him by a few months and realize he’s kind of tiny. But in the grand scheme of all things Bradley, we’ll gladly take that growth from him. Besides, he’s a really cute 46 1/2” and almost 50lb little guy.
He looks pretty good actually. From his eyes, to his breath sounds, he looks really good. We’re thrilled. We know that there are other bridges to cross; but for today, this was a nice walk across this particular bridge. Enough that Bradley’s doctor started talking about the future, telling me some of what will be coming along for him, from Guardianship to the ever present fear that the trigger in his brain will flip and he will fall into dementia or even Alzheimer’s. Yes, my son already has a predisposition in his brain towards developing early onset Dementia and Alzheimer’s.
So I have been reading up on Alzheimer’s and I have been reading up on the research that has been happening. I know that there are proteins in the brain that are scrubbers and if they stop scrubbing, then there is buildup of plaque and that’s where the Alzheimer’s starts (in the most layman, or layman’s terms!). How do they know this, by looking at the brain. And by looking at the brains of those with an extra chromosome, they are able to glean an amazing amount of information. Truth be told, the amount of information is actually proving incredibly useful for researchers desperately looking for a cure for a disease that is stealing so many of those we love. And those like my son are able to provide some answers. Not sure a system that eradicates those with an extra chromosome is the correct move to make. Knowledge is power, and without knowledge we are all lost...the moment we can figure out that we are all in this together the better the chances for all of us.
For today, it was surreal to sit and talk about my son in the future sense, my son in eleven years and the road we have to think about taking for him. I always have his future in the back of my mind; but so much of the time, his present takes the lead and the worry. Sometimes I spend considerable time worrying about his schooling and development to the point that I beat myself up a bit wondering at what I am or am not missing. But then inevitably, something health related comes up and I have to let all of that go and focus on the moment and how to best get him through and to the next moment. We knew that our life had changed the moment we were told that he had an extra chromosome and we knew that the way we relate to the world changed the moment they told us he had to have surgery to survive. We changed how we live in order for us all to survive, one moment to the next.
But right now, we’re in live mode. Live one day at a time...yes, day. We have been down the road, we know what it is to live one breath to another, one minute to the next, one hour... day to day is a bit new for us, we’ve enjoyed our time here. It’s something special to have the freedom to plan a bit and enjoy more sunlight away from the thunder. We don’t know how long this will last, though this week’s retching episode was short and relatively tiny in comparison to last week’s, last week’s was really, really rough.
He has grown since last year, maybe not by a bunch, in weight. But his height is showing a growth of really close to 4 inches in the past year. As long as he doesn’t lose weight, then we know that we are winning this particular battle with his health, and for that I’m grateful. For today; for right now, I get to spend a little time thinking about his tomorrow and trying to shape those images for myself. It feels a little weird, but it’s all right, I’m pretty good with weird.
Night all! Busy days lead to sleepy nights...too bad I can’t convince Bradley to sleep through the night! Happy Thursday Night!
Last Thursday of the 31 For 21 Challenge. And Bradley has had a pretty good 24 hours. When I took Sydney to the information meeting last night, turns out my little boy looked at Dad, then touched his chest and then signed and tried to say “go.” I was ecstatic that he did it, happy for Dad that he got to be there to see it, and I admit to being a little bummed to have missed it myself. But Dad misses stuff while he’s at work, so he deserved to witness something special first. :-).
Bradley had his physical today. My little guy is 46 and a 1/2 inches tall and 49 pounds, 15 ounces. On his growth chart he is showing a really pretty and nicely aligned arc. He’s still 10th percentile, which is hard for me to fathom if you really want to know. I look at him in comparison to his peers in his class and I think he’s pretty big. But then I see that him standing next to another kiddo that is only older than him by a few months and realize he’s kind of tiny. But in the grand scheme of all things Bradley, we’ll gladly take that growth from him. Besides, he’s a really cute 46 1/2” and almost 50lb little guy.
He looks pretty good actually. From his eyes, to his breath sounds, he looks really good. We’re thrilled. We know that there are other bridges to cross; but for today, this was a nice walk across this particular bridge. Enough that Bradley’s doctor started talking about the future, telling me some of what will be coming along for him, from Guardianship to the ever present fear that the trigger in his brain will flip and he will fall into dementia or even Alzheimer’s. Yes, my son already has a predisposition in his brain towards developing early onset Dementia and Alzheimer’s.
So I have been reading up on Alzheimer’s and I have been reading up on the research that has been happening. I know that there are proteins in the brain that are scrubbers and if they stop scrubbing, then there is buildup of plaque and that’s where the Alzheimer’s starts (in the most layman, or layman’s terms!). How do they know this, by looking at the brain. And by looking at the brains of those with an extra chromosome, they are able to glean an amazing amount of information. Truth be told, the amount of information is actually proving incredibly useful for researchers desperately looking for a cure for a disease that is stealing so many of those we love. And those like my son are able to provide some answers. Not sure a system that eradicates those with an extra chromosome is the correct move to make. Knowledge is power, and without knowledge we are all lost...the moment we can figure out that we are all in this together the better the chances for all of us.
For today, it was surreal to sit and talk about my son in the future sense, my son in eleven years and the road we have to think about taking for him. I always have his future in the back of my mind; but so much of the time, his present takes the lead and the worry. Sometimes I spend considerable time worrying about his schooling and development to the point that I beat myself up a bit wondering at what I am or am not missing. But then inevitably, something health related comes up and I have to let all of that go and focus on the moment and how to best get him through and to the next moment. We knew that our life had changed the moment we were told that he had an extra chromosome and we knew that the way we relate to the world changed the moment they told us he had to have surgery to survive. We changed how we live in order for us all to survive, one moment to the next.
But right now, we’re in live mode. Live one day at a time...yes, day. We have been down the road, we know what it is to live one breath to another, one minute to the next, one hour... day to day is a bit new for us, we’ve enjoyed our time here. It’s something special to have the freedom to plan a bit and enjoy more sunlight away from the thunder. We don’t know how long this will last, though this week’s retching episode was short and relatively tiny in comparison to last week’s, last week’s was really, really rough.
He has grown since last year, maybe not by a bunch, in weight. But his height is showing a growth of really close to 4 inches in the past year. As long as he doesn’t lose weight, then we know that we are winning this particular battle with his health, and for that I’m grateful. For today; for right now, I get to spend a little time thinking about his tomorrow and trying to shape those images for myself. It feels a little weird, but it’s all right, I’m pretty good with weird.
Night all! Busy days lead to sleepy nights...too bad I can’t convince Bradley to sleep through the night! Happy Thursday Night!
Wednesday, October 25, 2017
Trying to Choose Sydney’s School
October 25, 2017
Sydney and I spent the evening at Madison’s High School listening to their information night for incoming Freshman. I thought that this was a tough decision for Madison two years ago, hah!! It’s even tougher now. Sydney is in 8th grade and will be choosing her High School in the next few months. She is not sure where she wants to go, although she knows where she doens’t want to go.
Sydney really wants to try to play Volleyball in High School. Madison’s High School has no sports but they have an agreement for students to participate in sports at the other two High Schools. Unfortunately, if Sydney goes to Madison’s High School she has to try out at the same school her sister had to try out at, and that was the worse possible experience you can imagine. We’re all pretty sure that by virtue of her last name, Sydney would not make the team. But, if I took her to a High School with open enrollemnt, about a twenty five minute drive away (assuming I don’t hit traffic) she would make the Freshman team and just might get pulled up to JV right away. The wild card is the school up the hill. It’s a bit of a lottery to get into that school and quite a few parents are still wanting that school over the options for our town. So I can put her in, but I’m not sure that she will get in. She isn’t playing for their coach’s Club either, but at least she would have a chance at it. She is such a bright young lady, her brain moves fast and she’s perfectly capable of keeping up with the academics at that school, but she still worries a little. I worry a little that she would be a small fish lost at sea at a school with a good 2500 Students. They have a pretty good music program, where she could take violin until she gets the confidence to try out for their Strings Orcehstra. She could play her French Horn too I think. There is a little more rigor to their program, and a little less room for the creative side. They have more of the Clubs that she wants, and she likes the block schedule. They have some excellent Academics too. She could be involved in the International Baccalaureate program and that has a great deal of appeal. But kids talk, and the talk is...academics - overwhelming academics. Academics are extremely important but sometimes there should be something more.
Madison’s school will offer her the chance to have different opportunities. No Block schedule, but with three trimesters, they end up getting fifteen classes a year, which leaves room for the Core classes plus classes that may not be in their Academy but that they show interest in. I like the potential for internships for them, and the College credits that they can acquire to help them getting started in College. Still not completely sure I like the trimester system though.
I can’t do a darn thing about Volleyball. The Freshman coach has a personal beef against their parents, all because we didn’t pay to play at his Club. And the JV coaches are too weak to stand up to the Freshman coach and run their own team. If Sydney goes to Madison’s high school, there may not be team sports, she has to be ready for that potential. And I think overall she is, she likes the idea of a smaller class size where she can get to know her classmates, her teachers, and be known. She likes the idea that she has a little more freedom in her schedule in order to be creative, but to take in all the Academics that she really wants in her High School experience. But I think a part of her just really wants to go to the same school as her sister. They might fight a lot; and I mean a lot, but at the end of the day, having your sister somewhere on campus to talk to is a nice bit of comfort on a tough day.
Because Madison is already enrolled at the school, Sydney is in. I will do the paperwork to put her into the system. But I will also do the paperwork to see about sending her to the High School up the hill. If I do, she can decide. If I don’t she loses all control over her next four years. At this age, there is so very little control that kids have over their world, I think that it’s only fair that Sydney get to make the same choice that her sister got to make. Would my life be easier if they went to the same school? Yes in many ways, but some ways it would make it just as difficult. Getting them out of the house at an earlier time will be an incredible challenge for Sydney (the school up the hill starts even earlier than Madison’s school). At some point, having them ride together to school with Madison driving (gulp) might be pushing it in an extreme way.
Either way, it should be an interesting four years of High School for Sydney. I think Madison is making this school work for her, and in positive ways. I think that if Sydney decides that she wants the same school I do think she can make it work too. By letting her choose, if she goes to the same school as Madison then she will go into the whole experience with a better outlook than if we told her she had to go. And if she chooses up the hill, then we are all getting up earlier and trying to keep her from getting herself overwhelmed with the expectations she has for herself and from the school. Mom and Dad want good grades yes, but we also want them both to come out whole at the end of the day.
I’m pretty sure that High School choice was never meant to be this difficult to figure out. But here we are, trying to decide anyway. Sigh!
As for Bradley, more than likely, he will be attending a completely different school from his sisters and I can’t even begin to figure out how I feel about that. But THAT is defeinltely a Challenge for another day!
Closing out the 31 For 21 Challenge for day 25. Have a great night Folks!
Sydney and I spent the evening at Madison’s High School listening to their information night for incoming Freshman. I thought that this was a tough decision for Madison two years ago, hah!! It’s even tougher now. Sydney is in 8th grade and will be choosing her High School in the next few months. She is not sure where she wants to go, although she knows where she doens’t want to go.
Sydney really wants to try to play Volleyball in High School. Madison’s High School has no sports but they have an agreement for students to participate in sports at the other two High Schools. Unfortunately, if Sydney goes to Madison’s High School she has to try out at the same school her sister had to try out at, and that was the worse possible experience you can imagine. We’re all pretty sure that by virtue of her last name, Sydney would not make the team. But, if I took her to a High School with open enrollemnt, about a twenty five minute drive away (assuming I don’t hit traffic) she would make the Freshman team and just might get pulled up to JV right away. The wild card is the school up the hill. It’s a bit of a lottery to get into that school and quite a few parents are still wanting that school over the options for our town. So I can put her in, but I’m not sure that she will get in. She isn’t playing for their coach’s Club either, but at least she would have a chance at it. She is such a bright young lady, her brain moves fast and she’s perfectly capable of keeping up with the academics at that school, but she still worries a little. I worry a little that she would be a small fish lost at sea at a school with a good 2500 Students. They have a pretty good music program, where she could take violin until she gets the confidence to try out for their Strings Orcehstra. She could play her French Horn too I think. There is a little more rigor to their program, and a little less room for the creative side. They have more of the Clubs that she wants, and she likes the block schedule. They have some excellent Academics too. She could be involved in the International Baccalaureate program and that has a great deal of appeal. But kids talk, and the talk is...academics - overwhelming academics. Academics are extremely important but sometimes there should be something more.
Madison’s school will offer her the chance to have different opportunities. No Block schedule, but with three trimesters, they end up getting fifteen classes a year, which leaves room for the Core classes plus classes that may not be in their Academy but that they show interest in. I like the potential for internships for them, and the College credits that they can acquire to help them getting started in College. Still not completely sure I like the trimester system though.
I can’t do a darn thing about Volleyball. The Freshman coach has a personal beef against their parents, all because we didn’t pay to play at his Club. And the JV coaches are too weak to stand up to the Freshman coach and run their own team. If Sydney goes to Madison’s high school, there may not be team sports, she has to be ready for that potential. And I think overall she is, she likes the idea of a smaller class size where she can get to know her classmates, her teachers, and be known. She likes the idea that she has a little more freedom in her schedule in order to be creative, but to take in all the Academics that she really wants in her High School experience. But I think a part of her just really wants to go to the same school as her sister. They might fight a lot; and I mean a lot, but at the end of the day, having your sister somewhere on campus to talk to is a nice bit of comfort on a tough day.
Because Madison is already enrolled at the school, Sydney is in. I will do the paperwork to put her into the system. But I will also do the paperwork to see about sending her to the High School up the hill. If I do, she can decide. If I don’t she loses all control over her next four years. At this age, there is so very little control that kids have over their world, I think that it’s only fair that Sydney get to make the same choice that her sister got to make. Would my life be easier if they went to the same school? Yes in many ways, but some ways it would make it just as difficult. Getting them out of the house at an earlier time will be an incredible challenge for Sydney (the school up the hill starts even earlier than Madison’s school). At some point, having them ride together to school with Madison driving (gulp) might be pushing it in an extreme way.
Either way, it should be an interesting four years of High School for Sydney. I think Madison is making this school work for her, and in positive ways. I think that if Sydney decides that she wants the same school I do think she can make it work too. By letting her choose, if she goes to the same school as Madison then she will go into the whole experience with a better outlook than if we told her she had to go. And if she chooses up the hill, then we are all getting up earlier and trying to keep her from getting herself overwhelmed with the expectations she has for herself and from the school. Mom and Dad want good grades yes, but we also want them both to come out whole at the end of the day.
I’m pretty sure that High School choice was never meant to be this difficult to figure out. But here we are, trying to decide anyway. Sigh!
As for Bradley, more than likely, he will be attending a completely different school from his sisters and I can’t even begin to figure out how I feel about that. But THAT is defeinltely a Challenge for another day!
Closing out the 31 For 21 Challenge for day 25. Have a great night Folks!
Tuesday, October 24, 2017
The Importance of Georges
October 24, 2017
The power of George. Bradley has a few loves: all things Lightning McQueen, George Pig and all things Peppa, and Curious George. Thanks to Netflix, he can follow most of his favorites, and then thanks to YouTube and his IPad, he gets access to all the others. I was thinking that he was a perfect Curious George, he is curious and he manages to cause chaos on a regular basis. When he does create chaos and plenty of trouble, he also happens to be so very cute at it, you tend to forgive him. As he helps you clean up (sort of) it's a little easier to weather, a little. Cute or not...some messes just suck to clean up.
Sometime around the time he fell in love with Curious George, he discovered Peppa Pig. What I thought would be a quick fancy, has turned into a full fledge love affair. When he is connected to Wi-Fi, he watches on YouTube, when he doesn't have Wi-Fi, he watches the first season of episodes that I bought for him and put on his IPad. Although not a huge fan of stuffed toys, he will occasionally play with his little stuffed Peppa that talks when he presses her tummy. He really wants George to do something, but he was apparently broken out of the box, he is even quieter than usual for George's character. Bradley finds George’s lack of voice in the stuffed toy very upsetting. George has since been missing for days. Though our family wishes him only good things, we are pleased that this is a holiday that particular George toy will not be returning from - don’t tell Bradley, peace in the house and all; however, his lack of interest in anything stuffed truly is a Godsend here...for the most part he has let this go. Anyway; in the show, George spends a lot of time quiet, saying one word here or there, mostly "Dinosaur" and then he cries a lot. Bradley doesn't cry a lot, but he has been known to drop the tears for no reason, with little reason, cause he's tired, or mad or angry...or anything he wants to express that he can't quite get through in his mostly non-verbal communication. Mostly crocodile tears although of late, we have been on the receiving end of full belly sobs that are just the most heart breaking sort. Anyway, for the most part he can get across what he needs and wants to us, just like George.
As much as Bradley is a true source of chaos on most days; much like that monkey, he really seems to share a kindred spirit with Peppa’s wee brother George. And yet, I don’t know that he truly prefers George to Peppa, I think he enjoys them equally. I just happen to see a great deal of Bradley in George. I see the way that the family relates to George, I see the way that he is stubborn but sweet, predictable in his strict habits and preferences, and yet surprising everyone with his little moments here and there that are to quote Peppa herself: “Brilliant!” To which George echoed her in a new word for his character: “Brilliant.”
And just like the good little brother he is, when his sister is being super vocal while watching her team in the World Series we hear her little brother repeating her. From cheering to her chanting “Tay-Lor” in a deep voice...he was following along saying it after her and then laughing his butt off as he was trying to cheer with her too. Impressive really. We know that he can make all the sounds, individually. Trying to get him to throw those sounds into order to create words is a difficult process and when he does do it, he usually says it so low that you have to really listen for it - double check around you to see if anyone else heard it and agree with you that yes, he just threw out another word. Tonight though, he was very loud and clear copying his sister. And much like Peppa who was very proud of her little brother, so was Madison. So proud she wanted hugs and kisses which he gave while laughing...I was hoping for more words, but hey, they both seemed happier with a whole other language so that was cool too.
So as I look for Halloween customes for Bradley over the next few days (nothing like waiting until the last minute) I know that I am looking for a George, some sort of George. A monkey or a pig, I don’t really know which one I want more, and I don’t know which he’ll want more...we’ll have to see which one he goes for and hope it fits. Like literally fits, we are cutting it a bit close and costumes are going to be harder to find now. Size might negate his preferences all together. In truth, he might be part of McQueen’s pit crew at the rate I’m going, but that’s not so bad either. Bradley spends a great deal of time carrying around his Lightning McQueen car, so what better costume for him than as a member of a pit crew holding his McQueen?
Either way, he’ll be super cute, and may just get a little closer to others understanding “Trick or Treat” from him than ever before. Who knows, he might even throw out a new word and surprise us all. That would be quite cool too!
All in all, he has chosen the cutest, nicest little characters to love and growing up loving those guys is not a terrible thing. Everybody loves the George’s, pretty much everyone loves McQueen. Being loved is the best possible goal to have; aim high and dream big little guy, the world awaits! You already have a large following of Bradley lovers, why shouldn’t the list grow longer?
Hope you had a great Tuesday. Ending today’s Challenge in the 31 For 21 Challenge! Have a great night!
The power of George. Bradley has a few loves: all things Lightning McQueen, George Pig and all things Peppa, and Curious George. Thanks to Netflix, he can follow most of his favorites, and then thanks to YouTube and his IPad, he gets access to all the others. I was thinking that he was a perfect Curious George, he is curious and he manages to cause chaos on a regular basis. When he does create chaos and plenty of trouble, he also happens to be so very cute at it, you tend to forgive him. As he helps you clean up (sort of) it's a little easier to weather, a little. Cute or not...some messes just suck to clean up.
Sometime around the time he fell in love with Curious George, he discovered Peppa Pig. What I thought would be a quick fancy, has turned into a full fledge love affair. When he is connected to Wi-Fi, he watches on YouTube, when he doesn't have Wi-Fi, he watches the first season of episodes that I bought for him and put on his IPad. Although not a huge fan of stuffed toys, he will occasionally play with his little stuffed Peppa that talks when he presses her tummy. He really wants George to do something, but he was apparently broken out of the box, he is even quieter than usual for George's character. Bradley finds George’s lack of voice in the stuffed toy very upsetting. George has since been missing for days. Though our family wishes him only good things, we are pleased that this is a holiday that particular George toy will not be returning from - don’t tell Bradley, peace in the house and all; however, his lack of interest in anything stuffed truly is a Godsend here...for the most part he has let this go. Anyway; in the show, George spends a lot of time quiet, saying one word here or there, mostly "Dinosaur" and then he cries a lot. Bradley doesn't cry a lot, but he has been known to drop the tears for no reason, with little reason, cause he's tired, or mad or angry...or anything he wants to express that he can't quite get through in his mostly non-verbal communication. Mostly crocodile tears although of late, we have been on the receiving end of full belly sobs that are just the most heart breaking sort. Anyway, for the most part he can get across what he needs and wants to us, just like George.
As much as Bradley is a true source of chaos on most days; much like that monkey, he really seems to share a kindred spirit with Peppa’s wee brother George. And yet, I don’t know that he truly prefers George to Peppa, I think he enjoys them equally. I just happen to see a great deal of Bradley in George. I see the way that the family relates to George, I see the way that he is stubborn but sweet, predictable in his strict habits and preferences, and yet surprising everyone with his little moments here and there that are to quote Peppa herself: “Brilliant!” To which George echoed her in a new word for his character: “Brilliant.”
And just like the good little brother he is, when his sister is being super vocal while watching her team in the World Series we hear her little brother repeating her. From cheering to her chanting “Tay-Lor” in a deep voice...he was following along saying it after her and then laughing his butt off as he was trying to cheer with her too. Impressive really. We know that he can make all the sounds, individually. Trying to get him to throw those sounds into order to create words is a difficult process and when he does do it, he usually says it so low that you have to really listen for it - double check around you to see if anyone else heard it and agree with you that yes, he just threw out another word. Tonight though, he was very loud and clear copying his sister. And much like Peppa who was very proud of her little brother, so was Madison. So proud she wanted hugs and kisses which he gave while laughing...I was hoping for more words, but hey, they both seemed happier with a whole other language so that was cool too.
So as I look for Halloween customes for Bradley over the next few days (nothing like waiting until the last minute) I know that I am looking for a George, some sort of George. A monkey or a pig, I don’t really know which one I want more, and I don’t know which he’ll want more...we’ll have to see which one he goes for and hope it fits. Like literally fits, we are cutting it a bit close and costumes are going to be harder to find now. Size might negate his preferences all together. In truth, he might be part of McQueen’s pit crew at the rate I’m going, but that’s not so bad either. Bradley spends a great deal of time carrying around his Lightning McQueen car, so what better costume for him than as a member of a pit crew holding his McQueen?
Either way, he’ll be super cute, and may just get a little closer to others understanding “Trick or Treat” from him than ever before. Who knows, he might even throw out a new word and surprise us all. That would be quite cool too!
All in all, he has chosen the cutest, nicest little characters to love and growing up loving those guys is not a terrible thing. Everybody loves the George’s, pretty much everyone loves McQueen. Being loved is the best possible goal to have; aim high and dream big little guy, the world awaits! You already have a large following of Bradley lovers, why shouldn’t the list grow longer?
Hope you had a great Tuesday. Ending today’s Challenge in the 31 For 21 Challenge! Have a great night!
Monday, October 23, 2017
Science Creating Shaky Tomorrows
October 23, 2017
Maybe the most important message we can share about Down syndrome awareness and acceptance is simply to say no to Eugenics. The first group of people that Hitler destroyed were the developmentally disabled, he took them from their homes, told their families they were going to special farms and then immediately gassed them because they were not worthy of life.
As far a we want to believe we have come, turns out in some places, we still have a long way to go. In such countries like Iceland, it is a huge boon that they have all but eradicated Down syndrome. Only the babies that are born by ‘mistake’ are making into their society, but boy I worry about them. I worry about the theory of stopping it before it starts, letting a prenatal test tell someone their baby has a likelihood of Trisomy 21...and so an abortion follows because they can try again.
When given the true statistics, a look at the point of view from someone who has a loved one with Down syndrome in their lives, I wonder if the parent still really wants to abort. I wonder if they would have that option. If the potential medical funding is taken away, who could afford to say yes to the baby? Insurance is outrageous, and often the most unexpected happens to hit you straight in the jaw, so how can you gamble on their good health and say the funding doesn’t matter. And yet, look one of our babies in the eye, and you’d have to be stronger than me to say they don’t matter.
Truth of the matter is, every baby with an extra chromosome still matters, they still have feelings and personalities, people they love, and people who love them. If others could see the person beneath the diagnosis there would be no more discussion about this, lives would be protected and for once maybe their precious little lives would have meaning for not just those of us on their coat tails, but to everyone.
But we are a society of “Keeping up with the Jones’s” and you can’t keep up if your child is not the perfect future Ive Leaguer/ Olympian/ Pro Athlete/ insanely rich and prosperous adult that is waiting to get past potty training in order to achieve all that greatness. Anything less is unacceptable, and quite frankly will be someone else’s fault entirely... certainly nothing to do with his or her parents.
Where does it end? When is too far not acceptable? What happens when scientists figure out how to stop Down syndrome, and so all the research that is helping teach us about Alzheimer’s and hard tumors fades away. Once the Dominoes start falling there is no stopping them. Are we certain that’s the road we want to go down? First Down syndrome and then what’s next? Autism? What happens when the tests can show a child’s propensity for Autism, will the pressure start again? Abort and try again. How can we live with that kind of mentality, who would want too? I know I wouldn’t want to.
It’s funny, on the worst days, I wish that he could do more than he’s doing right now. I wish he could talk to me, that he could master getting dressed on his own, master the potty. In all that, I find that I am not sitting there thinking “I wish he didn’t have an extra chromosome.” I’m just thinking, “I wish he could be more caught up to the others, that he had more control over his immediate world. What happens around him and to him.” That’s what I find myself wishing for, wishing that he could take part in regular hobbies, stuff he just couldn’t handle right now.
Folks Hitler was wrong then and Eugenics is wrong now. Just my take on it, some agree and many don’t...but in a world gone crazy, I will take all the stories of love and inspiration I can get and pray that the good in humanity will somehow win. That for every kid that protects a special friend, ten kids learn and emulate that love, and perhaps that’s the legacy that will snowball down the hill and bring everyone a little closer, a little kinder, and perhaps Bradley and those like him, will find a place at the table.
Maybe the most important message we can share about Down syndrome awareness and acceptance is simply to say no to Eugenics. The first group of people that Hitler destroyed were the developmentally disabled, he took them from their homes, told their families they were going to special farms and then immediately gassed them because they were not worthy of life.
As far a we want to believe we have come, turns out in some places, we still have a long way to go. In such countries like Iceland, it is a huge boon that they have all but eradicated Down syndrome. Only the babies that are born by ‘mistake’ are making into their society, but boy I worry about them. I worry about the theory of stopping it before it starts, letting a prenatal test tell someone their baby has a likelihood of Trisomy 21...and so an abortion follows because they can try again.
When given the true statistics, a look at the point of view from someone who has a loved one with Down syndrome in their lives, I wonder if the parent still really wants to abort. I wonder if they would have that option. If the potential medical funding is taken away, who could afford to say yes to the baby? Insurance is outrageous, and often the most unexpected happens to hit you straight in the jaw, so how can you gamble on their good health and say the funding doesn’t matter. And yet, look one of our babies in the eye, and you’d have to be stronger than me to say they don’t matter.
Truth of the matter is, every baby with an extra chromosome still matters, they still have feelings and personalities, people they love, and people who love them. If others could see the person beneath the diagnosis there would be no more discussion about this, lives would be protected and for once maybe their precious little lives would have meaning for not just those of us on their coat tails, but to everyone.
But we are a society of “Keeping up with the Jones’s” and you can’t keep up if your child is not the perfect future Ive Leaguer/ Olympian/ Pro Athlete/ insanely rich and prosperous adult that is waiting to get past potty training in order to achieve all that greatness. Anything less is unacceptable, and quite frankly will be someone else’s fault entirely... certainly nothing to do with his or her parents.
Where does it end? When is too far not acceptable? What happens when scientists figure out how to stop Down syndrome, and so all the research that is helping teach us about Alzheimer’s and hard tumors fades away. Once the Dominoes start falling there is no stopping them. Are we certain that’s the road we want to go down? First Down syndrome and then what’s next? Autism? What happens when the tests can show a child’s propensity for Autism, will the pressure start again? Abort and try again. How can we live with that kind of mentality, who would want too? I know I wouldn’t want to.
It’s funny, on the worst days, I wish that he could do more than he’s doing right now. I wish he could talk to me, that he could master getting dressed on his own, master the potty. In all that, I find that I am not sitting there thinking “I wish he didn’t have an extra chromosome.” I’m just thinking, “I wish he could be more caught up to the others, that he had more control over his immediate world. What happens around him and to him.” That’s what I find myself wishing for, wishing that he could take part in regular hobbies, stuff he just couldn’t handle right now.
Folks Hitler was wrong then and Eugenics is wrong now. Just my take on it, some agree and many don’t...but in a world gone crazy, I will take all the stories of love and inspiration I can get and pray that the good in humanity will somehow win. That for every kid that protects a special friend, ten kids learn and emulate that love, and perhaps that’s the legacy that will snowball down the hill and bring everyone a little closer, a little kinder, and perhaps Bradley and those like him, will find a place at the table.
Sunday, October 22, 2017
Watching and Waiting
October 22, 2017
Well, at least we started the day an hour later than we did yesterday. Hallelujah...maybe I nodded off and almost broke my neck siting on the couch tonigh; but you know, whatever.
Bradley decided today it would be fun to try bouncing on my bed. He stands there and watches himself in the mirror and he moves his body up and down. He hasn’t figured out how to jump yet. My boy can’t figure out how to jump, on the bed, or the ground. So he stands on a mattress that has give and bends his knees and body up and down to simulate jumping. Maybe someday.
So with all the gunk we’ve had in our house, with everyone feeling better we decided to take the family to Red Robin (yes, yum!) and have a nice family lunch. Too bad there are too many stupid TVs in the place. My kids are trying not to stare at the them; but well, distracting for sure. So I ask them each what they have going on this week, they both look at me like I’m crazy. Although I know the family schedule because I keep it, I like to check in with them to see how their day to day looks. I asked Sydney about her History Quiz tomorrow, she tells me about the original colonies. I ask her what they are, she groans and tells me she’s not into that right now. Hmmm... Anything from you Madison? She had a tiny more to say, but then I asked her about her ASL class, and then it got interesting. She is so expressive and gets so animated when she gets talking in sign. I love it! I know that she is technically two months out of her first semester of ASL, but it is a College course and that one semester counts as a year of language. She took a year of French last year, and if you compared her almost perfect score in French to her work in ASL (which is also perfect or close too) I would say she knows more ASL. She could hold a conversation with someone almost completely in sign because she can finger spell what she doesn’t know, but holy moly, she knows so much! I am really thrilled and proud of her! She will take ASL II next semester and I am excited to see where she goes with it.
Anyway, we went through her signing stories while Bradley worked his way through half of the Pretzel bites and cheese. Filled his tummy to nice and happy, then fell asleep on his arm before his Mac and cheese could arrive. So while we ate, he slept. Then when we were done eating and looking to pay, he woke up and pointed to his Mac and cheese, and French fries, and all of his Mandarin Oranges. Truthfully, he woke up ready to eat and did a pretty nice job of making a dent in his food. Then while we decided to walk around the Mall and work our lunch off a bit. Bradley chose to use his Red Robin balloon to whack his Dad and Madison, Sydney was too quick and stayed away. We quickly had to remove his weapon when he came dangerously close to taking aim at an innocent bystander. He raised his arm and Dad snagged the balloon right out of his hand before he could start that downward swing...it’s like his parents can read his mind! Good grief!
After the bedtime routine tonight, he laid on a pillow on the couch and fell sleep almost instantly, his hand gripping mine while he fell asleep, and stayed that way until I had to pull my hand free so he could be carted off to bed for the night.
Yes, when he isn’t allowed to freely eat every popsicle in the house and he is told No...he can be vocal and heartbroken, making sure everyone knows he has been sorely wronged. And I admit that there are moments in the day that are a bit trying in their intensity, and honestly, noise level. But, I watch him trying so hard. I watch him trying to master impulse in a moment where he is overwhelmed by the possibilities around him that are not allowed to him along with all those things that are allowed. He grabs and pulls and for some reason he feels the need to constantly throw laundry on the floor. I don’t know why, I know it is confounding and frustrating...but he still chooses to do it. He’ll even begrudgingly help pick the laundry up and put it back...but he can’t seem to help himself. And yet yesterday, he helped me load and start the washer and dryer. And I try to redirect him and keep him engaged, but sometimes he just can’t have what he wants and that can get frustrating, and sometimes loud. Sometimes you just have to hug him tight and bring him back down with lots of kisses to make him start giggling, tickling of his toes, noses, butterfly kisses and even a taps on his nose...whatever it takes to turn the train around and send him back down the correct track.
And then at the end of the day today, he holds my hand as he falls asleep. He isn’t the easiest boy, he isn’t the hardest either. He’s just a little boy trying to make sense of a really confusing world. And I just love him for all he is and all he isn’t. I just love him. So you keep working on your jumping Bradley; someday, you’re going to leave the ground and surprise yourself! And I can’t wait to be there and watch the wonder on your face as you suddenly figure it out! We’ll keep doing laundry together and someday you’ll sweep it into your drawer and not the floor...I just know it. And you’ll be there to see the wonder on my face when I see you finally figure it out!
Okay not always enjoying the Challenges, but hey... living the Challenges all the same.
Day 22 in the books in the 31 For 21 Challenge. See you tomorrow Folks!
Well, at least we started the day an hour later than we did yesterday. Hallelujah...maybe I nodded off and almost broke my neck siting on the couch tonigh; but you know, whatever.
Bradley decided today it would be fun to try bouncing on my bed. He stands there and watches himself in the mirror and he moves his body up and down. He hasn’t figured out how to jump yet. My boy can’t figure out how to jump, on the bed, or the ground. So he stands on a mattress that has give and bends his knees and body up and down to simulate jumping. Maybe someday.
So with all the gunk we’ve had in our house, with everyone feeling better we decided to take the family to Red Robin (yes, yum!) and have a nice family lunch. Too bad there are too many stupid TVs in the place. My kids are trying not to stare at the them; but well, distracting for sure. So I ask them each what they have going on this week, they both look at me like I’m crazy. Although I know the family schedule because I keep it, I like to check in with them to see how their day to day looks. I asked Sydney about her History Quiz tomorrow, she tells me about the original colonies. I ask her what they are, she groans and tells me she’s not into that right now. Hmmm... Anything from you Madison? She had a tiny more to say, but then I asked her about her ASL class, and then it got interesting. She is so expressive and gets so animated when she gets talking in sign. I love it! I know that she is technically two months out of her first semester of ASL, but it is a College course and that one semester counts as a year of language. She took a year of French last year, and if you compared her almost perfect score in French to her work in ASL (which is also perfect or close too) I would say she knows more ASL. She could hold a conversation with someone almost completely in sign because she can finger spell what she doesn’t know, but holy moly, she knows so much! I am really thrilled and proud of her! She will take ASL II next semester and I am excited to see where she goes with it.
Anyway, we went through her signing stories while Bradley worked his way through half of the Pretzel bites and cheese. Filled his tummy to nice and happy, then fell asleep on his arm before his Mac and cheese could arrive. So while we ate, he slept. Then when we were done eating and looking to pay, he woke up and pointed to his Mac and cheese, and French fries, and all of his Mandarin Oranges. Truthfully, he woke up ready to eat and did a pretty nice job of making a dent in his food. Then while we decided to walk around the Mall and work our lunch off a bit. Bradley chose to use his Red Robin balloon to whack his Dad and Madison, Sydney was too quick and stayed away. We quickly had to remove his weapon when he came dangerously close to taking aim at an innocent bystander. He raised his arm and Dad snagged the balloon right out of his hand before he could start that downward swing...it’s like his parents can read his mind! Good grief!
After the bedtime routine tonight, he laid on a pillow on the couch and fell sleep almost instantly, his hand gripping mine while he fell asleep, and stayed that way until I had to pull my hand free so he could be carted off to bed for the night.
Yes, when he isn’t allowed to freely eat every popsicle in the house and he is told No...he can be vocal and heartbroken, making sure everyone knows he has been sorely wronged. And I admit that there are moments in the day that are a bit trying in their intensity, and honestly, noise level. But, I watch him trying so hard. I watch him trying to master impulse in a moment where he is overwhelmed by the possibilities around him that are not allowed to him along with all those things that are allowed. He grabs and pulls and for some reason he feels the need to constantly throw laundry on the floor. I don’t know why, I know it is confounding and frustrating...but he still chooses to do it. He’ll even begrudgingly help pick the laundry up and put it back...but he can’t seem to help himself. And yet yesterday, he helped me load and start the washer and dryer. And I try to redirect him and keep him engaged, but sometimes he just can’t have what he wants and that can get frustrating, and sometimes loud. Sometimes you just have to hug him tight and bring him back down with lots of kisses to make him start giggling, tickling of his toes, noses, butterfly kisses and even a taps on his nose...whatever it takes to turn the train around and send him back down the correct track.
And then at the end of the day today, he holds my hand as he falls asleep. He isn’t the easiest boy, he isn’t the hardest either. He’s just a little boy trying to make sense of a really confusing world. And I just love him for all he is and all he isn’t. I just love him. So you keep working on your jumping Bradley; someday, you’re going to leave the ground and surprise yourself! And I can’t wait to be there and watch the wonder on your face as you suddenly figure it out! We’ll keep doing laundry together and someday you’ll sweep it into your drawer and not the floor...I just know it. And you’ll be there to see the wonder on my face when I see you finally figure it out!
Okay not always enjoying the Challenges, but hey... living the Challenges all the same.
Day 22 in the books in the 31 For 21 Challenge. See you tomorrow Folks!
Saturday, October 21, 2017
Today
October 21, 2017
I can get pretty overwhelmed by what Bradley doesn’t do on a daily basis, but I can get just as overwhelmed by what he does do. I try to hold onto the good stuff and that helps me truly enjoy all the things that he does daily and not miss when he does something that is new, and quite possibly not repeated for days, weeks, and months on end.
He’s been pulling pizza, or lunch meat out of the fridge for months now, and when he grabs the lunch meat, he also grabs the mustard and a paper plate from the pantry. If it’s pizza, I warm it up, cut it up and he eats like a typical little boy - lots of it! When it’s lunch meat, he helps me squeeze mustard on his bread, and lay out the meat, then he puts the mustard away and the lunch meat and we meet at the table. This also gets pretty supervised because he hasn’t figured out that he has to take small bites. He takes lots of bites, of various sizes that all come rushing back out at me if we aren’t careful. He’s also been choosing between peach or strawberry yogurt. He will either bend down and point, or he will pick them up and and show them to me; or someone, to point out which one he wants. Lots of stuff connected to food around him, but then whether or not he eats and how much, and how well... might always be pivotal for his well being.
His development at school is also pretty important for obvious reasons. At the beginning of the year, I have been able to watch him progress to take his lunchbox from his backpack, take it to the classroom fridge and put it away, then go to his seat. But this past week, I have watched my son put his lunch away, then walk to his visual schedule, take the picture of work, and put it on his tab for “Right now” and then head to his seat. I watched in such awe that he did that so nonchalantly and was told that he had started doing that more and more. So now he does it for me, and we work on him being consistent by me handing him one of his favorite cars and kiss him goodbye, then he goes to his seat. Pretty exciting!
So I came off that for the week. Excited for him. Pleased by his progress at school. And then I got to see some wonderful stuff at home too.
We have a Keurig and my little boy watches me drink a bit of coffee. Now, I don’t usually have a cup until after I get back from dropping the kids, and mostly on the weekends so he is busy playing so he isn’t around me too much when I am brewing, but he sees me drink it. Perhaps he knows it’s his fault. On days when he thinks that day should start before daybreak; perhaps I have considered how wonderful a coffee IV would be...but as yet, I don’t think they do that. Do they? Just kidding. Sort of. But anyway; the other day, he came up and actually pulled a used pod out of the Keurig and put a new one in, then tried to close the lid, but had it kind of crooked so it ddn’t quite work. So while I adjusted it to help him and show him; he was otherwise busy, putting the old pod back into the rack. Cracked me up. I thanked him then quickly moved him far from the heat.
He’s been surprising us with things he remembers too. I wear a pretty hefty knee brace when I can’t avoid it, and that’s pretty often. So in the mornings, if he’s around and sees me put the sleeve over my knee, he hands me the brace, and tries to help me lock it in place. This morning, he tried to hand Eric his shorts, but since he already had pants on, Eric laughed and told him he was good. So then he grabbed a shirt for Dad, a pair of my socks...which Dad and I swapped out...and then found Dad’s shoes. He loves to help us out. So we constantly try to let him help.
This evening, he decided to help create a little magic. I was sitting in the living room and I was folding laundry. Bradley meandered to his little table behind our couch. While I folded, I was listening to music from Sydney’s room. Pretty good music as my talented daughter was working on teaching herself how to play piano on our keyboard. Eric and I were both listening without letting her know that we were listening. And I have to say, she’s coming along. Eric looked at me and said: “Is she planning to play three instruments?”
I grinned, “Yes. I think she is. Isn’t it awesome?”
Meanwhile, Bradley made his way into the kitchen without me hearing him. I realized once I heard his chair scrape and I got up and went into the kitchen. Sure enough he had pulled a strawberry yogurt out of the fridge. But this time it was different. What was completely new about this? He had pulled the lid off the yogurt, he hasn’t ever been able to take the lid off the yogurt before. Granted they aren’t as tight as the ones on his pudding, but the same technique and that requires strong control of that pincer grasp. Tonight, my guy got it! I was so excited for him!!!
He has long since gone to sleep now, he was up at 5 and ready to start his day this morning with mom running slightly behind; yeah whatever, struggling. So it was with great joy that he made it until 7:45 (cranky little tired dude!) before he fell asleep. I am crossing my fingers that that will translate to at least 6 possibly 7 tomorrow morning. A mom can dream. I have this hope that somehow, someday, some way, I will not only get my boy potty trained, but he will learn to appreciate the joy of sleeping in on a weekend. On the good days, I believe that both of these can happen!
On the good days, I believe that if I keep talking and advocating for Bradley, others will see him for who he is and what he is worth, priceless. The world will not dismiss him but accept him and allow him to be who he is going to be and let him be a part of this world. That maybe, just maybe, his won’t be the last generation of those with an extra chromosome. A mom can dream.
Today was a Good Day. Madison is still riding her highs, Sydney is continuing her journey in music and wowing us, and little Bradley is putting one foot in front of the other, a little more confident, a little more self assured. Really, who can ask for anything more? Who would want too?
Happy Saturday all! Continuing the 31 For 21 Challenge on Day 21!
I can get pretty overwhelmed by what Bradley doesn’t do on a daily basis, but I can get just as overwhelmed by what he does do. I try to hold onto the good stuff and that helps me truly enjoy all the things that he does daily and not miss when he does something that is new, and quite possibly not repeated for days, weeks, and months on end.
He’s been pulling pizza, or lunch meat out of the fridge for months now, and when he grabs the lunch meat, he also grabs the mustard and a paper plate from the pantry. If it’s pizza, I warm it up, cut it up and he eats like a typical little boy - lots of it! When it’s lunch meat, he helps me squeeze mustard on his bread, and lay out the meat, then he puts the mustard away and the lunch meat and we meet at the table. This also gets pretty supervised because he hasn’t figured out that he has to take small bites. He takes lots of bites, of various sizes that all come rushing back out at me if we aren’t careful. He’s also been choosing between peach or strawberry yogurt. He will either bend down and point, or he will pick them up and and show them to me; or someone, to point out which one he wants. Lots of stuff connected to food around him, but then whether or not he eats and how much, and how well... might always be pivotal for his well being.
His development at school is also pretty important for obvious reasons. At the beginning of the year, I have been able to watch him progress to take his lunchbox from his backpack, take it to the classroom fridge and put it away, then go to his seat. But this past week, I have watched my son put his lunch away, then walk to his visual schedule, take the picture of work, and put it on his tab for “Right now” and then head to his seat. I watched in such awe that he did that so nonchalantly and was told that he had started doing that more and more. So now he does it for me, and we work on him being consistent by me handing him one of his favorite cars and kiss him goodbye, then he goes to his seat. Pretty exciting!
So I came off that for the week. Excited for him. Pleased by his progress at school. And then I got to see some wonderful stuff at home too.
We have a Keurig and my little boy watches me drink a bit of coffee. Now, I don’t usually have a cup until after I get back from dropping the kids, and mostly on the weekends so he is busy playing so he isn’t around me too much when I am brewing, but he sees me drink it. Perhaps he knows it’s his fault. On days when he thinks that day should start before daybreak; perhaps I have considered how wonderful a coffee IV would be...but as yet, I don’t think they do that. Do they? Just kidding. Sort of. But anyway; the other day, he came up and actually pulled a used pod out of the Keurig and put a new one in, then tried to close the lid, but had it kind of crooked so it ddn’t quite work. So while I adjusted it to help him and show him; he was otherwise busy, putting the old pod back into the rack. Cracked me up. I thanked him then quickly moved him far from the heat.
He’s been surprising us with things he remembers too. I wear a pretty hefty knee brace when I can’t avoid it, and that’s pretty often. So in the mornings, if he’s around and sees me put the sleeve over my knee, he hands me the brace, and tries to help me lock it in place. This morning, he tried to hand Eric his shorts, but since he already had pants on, Eric laughed and told him he was good. So then he grabbed a shirt for Dad, a pair of my socks...which Dad and I swapped out...and then found Dad’s shoes. He loves to help us out. So we constantly try to let him help.
This evening, he decided to help create a little magic. I was sitting in the living room and I was folding laundry. Bradley meandered to his little table behind our couch. While I folded, I was listening to music from Sydney’s room. Pretty good music as my talented daughter was working on teaching herself how to play piano on our keyboard. Eric and I were both listening without letting her know that we were listening. And I have to say, she’s coming along. Eric looked at me and said: “Is she planning to play three instruments?”
I grinned, “Yes. I think she is. Isn’t it awesome?”
Meanwhile, Bradley made his way into the kitchen without me hearing him. I realized once I heard his chair scrape and I got up and went into the kitchen. Sure enough he had pulled a strawberry yogurt out of the fridge. But this time it was different. What was completely new about this? He had pulled the lid off the yogurt, he hasn’t ever been able to take the lid off the yogurt before. Granted they aren’t as tight as the ones on his pudding, but the same technique and that requires strong control of that pincer grasp. Tonight, my guy got it! I was so excited for him!!!
He has long since gone to sleep now, he was up at 5 and ready to start his day this morning with mom running slightly behind; yeah whatever, struggling. So it was with great joy that he made it until 7:45 (cranky little tired dude!) before he fell asleep. I am crossing my fingers that that will translate to at least 6 possibly 7 tomorrow morning. A mom can dream. I have this hope that somehow, someday, some way, I will not only get my boy potty trained, but he will learn to appreciate the joy of sleeping in on a weekend. On the good days, I believe that both of these can happen!
On the good days, I believe that if I keep talking and advocating for Bradley, others will see him for who he is and what he is worth, priceless. The world will not dismiss him but accept him and allow him to be who he is going to be and let him be a part of this world. That maybe, just maybe, his won’t be the last generation of those with an extra chromosome. A mom can dream.
Today was a Good Day. Madison is still riding her highs, Sydney is continuing her journey in music and wowing us, and little Bradley is putting one foot in front of the other, a little more confident, a little more self assured. Really, who can ask for anything more? Who would want too?
Happy Saturday all! Continuing the 31 For 21 Challenge on Day 21!
Friday, October 20, 2017
Those New Challenges
October 20, 2017
Madison and Bradley went off to school today, while Dad stayed home to recover from his migraine and his own fun with the stomach bug. It has been a completely rough few days. We were afraid that Bradley was going to catch it, but I was able to successfully navigate him away from the ruckus...I sent him to school and I slept while he was gone, trying to fight off the gunk just in case it was coming for me. Turns out it wasn’t. And it turns out that I sent him straight into the Lion’s Den instead. When I went to pick him up it was to learn that two students had been vomitting at the end of the day. I stood there for a second and let that sink in. I sent him to school, because he wasn’t sick and because I was hoping that I could keep him away from the stomach bug. Imagine that feeling, as I stood there and tried to keep from picking up my son, cranky and trying to climb me like he’s a koala and I am a tree; and wondering, is he going to be sick next?
I was further concerned when he fell asleep on the three minute ride home, then slept until 4:00. My concern at that point was twofold: was he proving to me that he was sick, and would I be sleeping that night? I am happy to say that he has not gotten sick to this point, Hallelujah!! And no I didn’t sleep because he woke up and just wouldn’t go back to sleep. Eric took a turn with him, and then I did, and then Eric went back and somehow, when the alarm went off this morning we got up and faced the day anyway. I’m not going to lie though, once Bradley was at school, I was back home and finding my way to bed for a much needed nap. Bradley came home and played a bit, watched his IPad a bit, and even spent some time trying to copy the lines from “Mater’s Tall Tales.” That might just be the best part of my day!
But then there was the front row seat of mine as I sat and watched my oldest stumble through trying to tell her Dad that she had a boy ask her out today and after consideration; and some texting with yours truly, she decided to say yes. In the corner, we have Sydney. I don’t know whose side she was on, but her commentary was killing me.
Eric asked Madison to tell him about this boy, and Madison goes: “Like a picture?”
Eric says: “You have a picture?”
Madison goes: “Yeah, let me get my phone.”
Sydney throws her hand up in the air and says: “Hold up, I got this!” And starts searching on her phone to send him and me a picture of Madison and this boy at the football game tonight. She has already been chatting with Madison’s best friend, and then starts relaying input from her own best friend as well. I’m looking at her; thinking to myself, she’s known for like fifteen minutes and she already has that much intel? If she put half that effort into her mornings she could sleep until 7am. And two, that’s an incredible amount of intel to gather in such a short time, I’m kind of impressed and frightened all at once.
So after Eric uses his inhaler from laughing so hard at Sydney, we both take a look at the picture. I’m still chuckling a bit, while Eric sat stoically absorbing all this news. Sydney looks at her dad and grinning, she pops up with “Conceal don’t feel, Dad!”
I wouldn’t say the conversation got totally easier, but it sure helped to ease Madison’s tension about it all. We talked about rules and whatnot. Expectations. Etc. All that good stuff that comes with being a parent of a teen on the brink of a first date. Yikes! We knew this day would come, but I’m not sure a parent is ever actually ready for it. But for now, my kiddo is all a flutter; and in its own way, that is the sweetest thing.
And from what she tells us, the boy knows about her brother and is not only calm about it, but thinks he’s cute. So that’s a nice start to any friendship I’d say.
A whole new kind Challenge for our house... Yikes! HAHA. Happy Friday all!
Madison and Bradley went off to school today, while Dad stayed home to recover from his migraine and his own fun with the stomach bug. It has been a completely rough few days. We were afraid that Bradley was going to catch it, but I was able to successfully navigate him away from the ruckus...I sent him to school and I slept while he was gone, trying to fight off the gunk just in case it was coming for me. Turns out it wasn’t. And it turns out that I sent him straight into the Lion’s Den instead. When I went to pick him up it was to learn that two students had been vomitting at the end of the day. I stood there for a second and let that sink in. I sent him to school, because he wasn’t sick and because I was hoping that I could keep him away from the stomach bug. Imagine that feeling, as I stood there and tried to keep from picking up my son, cranky and trying to climb me like he’s a koala and I am a tree; and wondering, is he going to be sick next?
I was further concerned when he fell asleep on the three minute ride home, then slept until 4:00. My concern at that point was twofold: was he proving to me that he was sick, and would I be sleeping that night? I am happy to say that he has not gotten sick to this point, Hallelujah!! And no I didn’t sleep because he woke up and just wouldn’t go back to sleep. Eric took a turn with him, and then I did, and then Eric went back and somehow, when the alarm went off this morning we got up and faced the day anyway. I’m not going to lie though, once Bradley was at school, I was back home and finding my way to bed for a much needed nap. Bradley came home and played a bit, watched his IPad a bit, and even spent some time trying to copy the lines from “Mater’s Tall Tales.” That might just be the best part of my day!
But then there was the front row seat of mine as I sat and watched my oldest stumble through trying to tell her Dad that she had a boy ask her out today and after consideration; and some texting with yours truly, she decided to say yes. In the corner, we have Sydney. I don’t know whose side she was on, but her commentary was killing me.
Eric asked Madison to tell him about this boy, and Madison goes: “Like a picture?”
Eric says: “You have a picture?”
Madison goes: “Yeah, let me get my phone.”
Sydney throws her hand up in the air and says: “Hold up, I got this!” And starts searching on her phone to send him and me a picture of Madison and this boy at the football game tonight. She has already been chatting with Madison’s best friend, and then starts relaying input from her own best friend as well. I’m looking at her; thinking to myself, she’s known for like fifteen minutes and she already has that much intel? If she put half that effort into her mornings she could sleep until 7am. And two, that’s an incredible amount of intel to gather in such a short time, I’m kind of impressed and frightened all at once.
So after Eric uses his inhaler from laughing so hard at Sydney, we both take a look at the picture. I’m still chuckling a bit, while Eric sat stoically absorbing all this news. Sydney looks at her dad and grinning, she pops up with “Conceal don’t feel, Dad!”
I wouldn’t say the conversation got totally easier, but it sure helped to ease Madison’s tension about it all. We talked about rules and whatnot. Expectations. Etc. All that good stuff that comes with being a parent of a teen on the brink of a first date. Yikes! We knew this day would come, but I’m not sure a parent is ever actually ready for it. But for now, my kiddo is all a flutter; and in its own way, that is the sweetest thing.
And from what she tells us, the boy knows about her brother and is not only calm about it, but thinks he’s cute. So that’s a nice start to any friendship I’d say.
A whole new kind Challenge for our house... Yikes! HAHA. Happy Friday all!
A Quick 19
October 19, 2017
We’ve had a bout of something tear through our house. As a result, Sydney missed her Volleyball Game for school. The big game against the undefeated school. Yeah, bummer.
But last night night was a big night for our Sophomore too. So Dad has to stay with Sydney and Bradley, and I took Madison to her High School. As a strictly Academic High School, they award Academic Letters for Academic Achievement. Students with a 3.75 or higher are eligible. As a Freshman, there are no weighted AP classes. As a Soohomore, Madison had her first opportunity at an AP class, but it was European History. Unless you are a true fan of European History, then what a tough class, I know this because I struggled through it as a kid. We talked and she chose to wait for AP US History, and English.
So, with a 3.9 GPA, our girl earned her Achievement Award last night. They called her name and presented her with a certificate and her letter. She was so excited! She was one of 170 students recognized between all the grades and a total of 750 students or so. Not bad if you ask me.
After the ceremony we stopped and ordered her letterman’s jacket. Maybe she won’t have a Volleyball on it, but she has the rest of the things that represent who she is in her school life: Academics, Band, and Dance. Her Dad and I are so proud of her and her hard work. Most important, she is so proud of herself and her achievements, and she’s so excited to get her jacket she’ll be crazy to live with the next three weeks, but she’s so happy!
Life can be rough, and as much good that has happened for her, there has been plenty of rough. But Madison is very strong, resilient, and kind - more of each than she realizes right now. I’m happy for her. In fact, as proud of the work that I am, I’m just as thrilled that she also gets to experience this fun part of High School; running round her school wearing her school jacket with pride.
The fact that on the way home she was planning on how to keep up the hard work to get the bar for year two of Achievement and then the Lamp for the third year, that makes me even happier that she’ll get her jacket soon. She’s a great kid and deserves the recognition for her hard work, and the jacket to reward her and give her a sense of connection too.
It’s great to be Mom in this house!!
We’ve had a bout of something tear through our house. As a result, Sydney missed her Volleyball Game for school. The big game against the undefeated school. Yeah, bummer.
But last night night was a big night for our Sophomore too. So Dad has to stay with Sydney and Bradley, and I took Madison to her High School. As a strictly Academic High School, they award Academic Letters for Academic Achievement. Students with a 3.75 or higher are eligible. As a Freshman, there are no weighted AP classes. As a Soohomore, Madison had her first opportunity at an AP class, but it was European History. Unless you are a true fan of European History, then what a tough class, I know this because I struggled through it as a kid. We talked and she chose to wait for AP US History, and English.
So, with a 3.9 GPA, our girl earned her Achievement Award last night. They called her name and presented her with a certificate and her letter. She was so excited! She was one of 170 students recognized between all the grades and a total of 750 students or so. Not bad if you ask me.
After the ceremony we stopped and ordered her letterman’s jacket. Maybe she won’t have a Volleyball on it, but she has the rest of the things that represent who she is in her school life: Academics, Band, and Dance. Her Dad and I are so proud of her and her hard work. Most important, she is so proud of herself and her achievements, and she’s so excited to get her jacket she’ll be crazy to live with the next three weeks, but she’s so happy!
Life can be rough, and as much good that has happened for her, there has been plenty of rough. But Madison is very strong, resilient, and kind - more of each than she realizes right now. I’m happy for her. In fact, as proud of the work that I am, I’m just as thrilled that she also gets to experience this fun part of High School; running round her school wearing her school jacket with pride.
The fact that on the way home she was planning on how to keep up the hard work to get the bar for year two of Achievement and then the Lamp for the third year, that makes me even happier that she’ll get her jacket soon. She’s a great kid and deserves the recognition for her hard work, and the jacket to reward her and give her a sense of connection too.
It’s great to be Mom in this house!!
Wednesday, October 18, 2017
Bradley In Control
October 18, 2017
My son has an IPad and he can find anything on it; whereas I can barely find anything. We have so many learning apps on it, and I make him sit down with me to run through them quite a bit. Lots of time he and fight over this, but once in a while he actually enjoys this time learning. If I remind him too much of school he freaks out, so we do it in spurts and starts. He enjoys School very much, he doesn't enjoy school with mom very much. Summer brings sooo much joy in our house...Not. But work we must.
I try to think of motivating things, but most of my best ideas and tools go to school to keep him on track there, so that I am stuck with next to nothing here at home. "Here Bradley, do this work and then you can have a car!" Yeah right, if he can't get the car in my hand there are a good forty all over the place, some in places that he knows where they are and I don't. I swear he does this on purpose..
When he gets to run the control of his IPad, he is in seventh Heaven. He gets control of it quite a bit. There is much more time for him to have his own control than the time I can control. He outwaits me by virtue of I have too many other things I have to do for him and to him that I can't really force the issue with him. All that being said, there are times he gets very frustrated with me and to shut me up, basically he will; for example, suddenly match all nine letters on our card appropriately and correctly and then look at me like: "Fine, it's done. Can I have my IPad now?" Or he'll fly through one of his favorite learning apps, Starfall, and then give me the same look. And while I sit there looking at him with a barrage of thoughts rushing through my head like: dang it, you stinker, you turkey, I am so impressed with you, I didn't know you could do that, how long have you been holding out on me, and how do I get you to do that again and again. I hand over the IPad and watch him navigate to his favorites.
He has favorite little youtube videos, shorts with kids, pranks and this one illusionist/magician that blows us all away. I don't know how he finds them, which concerns me a bit, but since I am always right here, I get to monitor him and make sure he doesn't go anywhere he isn't allowed to go. I think he alone has made the Magician a millionaire and he quite possibly has financed the college education of at least three of the seven kids in this YouTube Video family that posts their visits to playgrounds, and vacations and all that kind of stuff. I have their theme song permanently embedded in my brain never to be removed and find myself humming it at the oddest times. Through his browsing he found Peppa Pig and has watched her constantly until at one point he discovered "Masha and the Bear" in Russian. So I happened to find Masha on Netflix, and sometimes he'll watch it there, but mostly, he wants to watch it on his IPad, preferably in Russian. The only great part about finding Masha in English is that now Eric and I know what they are saying, and that Masha is pretty funny for an annoying little girl.
Here's the kicker in all this though, Bradley will ask for his movie, often while he is in the middle of watching Masha or Peppa on the big tv. And for whatever reason, often sheer survival, he'll finally get it and then will proceed to go right to whatever he was just watching on the big tv. Apparently, my son has control issues.
I am not sure if this is good or bad for him. I can see where he very might need to have some areas of his life where he has control; because let's face it, there is very little he does have control over. Most the time it's not even his parents or his school with the control either, most days he is at the whim of his own body. Trying to temper his need to control some parts of his life with teaching him compliance to get along well with others in control of his life is proving the toughest of battles.
I am always pleased when he is willing to come with me for things I ask of him, sometimes carrying his IPad, sometimes he leaves it behind and comes back to it. This is something he only started in the last nine months or so. I know that seems like a long time, but things with Bradley build over time. Behaviors change and adapt but only in small increments that may or may not build on each other. We know he's changed because he has kept most of the changes and is showing us excellent progress as he keeps moving forward in his abilities and his capabilities. I'm not sure it will ever move as fast as we would like, but as long as progress is happening in whatever increments that Bradley will give us, we'll take.
Time to swap the IPad for Pajamas and call it a night with a few books, the old fashioned kind that mom reads, not a computer generated voice. ;-). Have a great night all!
31 for 21...Challenging to Bring Awareness and Acceptance for Down syndrome!
My son has an IPad and he can find anything on it; whereas I can barely find anything. We have so many learning apps on it, and I make him sit down with me to run through them quite a bit. Lots of time he and fight over this, but once in a while he actually enjoys this time learning. If I remind him too much of school he freaks out, so we do it in spurts and starts. He enjoys School very much, he doesn't enjoy school with mom very much. Summer brings sooo much joy in our house...Not. But work we must.
I try to think of motivating things, but most of my best ideas and tools go to school to keep him on track there, so that I am stuck with next to nothing here at home. "Here Bradley, do this work and then you can have a car!" Yeah right, if he can't get the car in my hand there are a good forty all over the place, some in places that he knows where they are and I don't. I swear he does this on purpose..
When he gets to run the control of his IPad, he is in seventh Heaven. He gets control of it quite a bit. There is much more time for him to have his own control than the time I can control. He outwaits me by virtue of I have too many other things I have to do for him and to him that I can't really force the issue with him. All that being said, there are times he gets very frustrated with me and to shut me up, basically he will; for example, suddenly match all nine letters on our card appropriately and correctly and then look at me like: "Fine, it's done. Can I have my IPad now?" Or he'll fly through one of his favorite learning apps, Starfall, and then give me the same look. And while I sit there looking at him with a barrage of thoughts rushing through my head like: dang it, you stinker, you turkey, I am so impressed with you, I didn't know you could do that, how long have you been holding out on me, and how do I get you to do that again and again. I hand over the IPad and watch him navigate to his favorites.
He has favorite little youtube videos, shorts with kids, pranks and this one illusionist/magician that blows us all away. I don't know how he finds them, which concerns me a bit, but since I am always right here, I get to monitor him and make sure he doesn't go anywhere he isn't allowed to go. I think he alone has made the Magician a millionaire and he quite possibly has financed the college education of at least three of the seven kids in this YouTube Video family that posts their visits to playgrounds, and vacations and all that kind of stuff. I have their theme song permanently embedded in my brain never to be removed and find myself humming it at the oddest times. Through his browsing he found Peppa Pig and has watched her constantly until at one point he discovered "Masha and the Bear" in Russian. So I happened to find Masha on Netflix, and sometimes he'll watch it there, but mostly, he wants to watch it on his IPad, preferably in Russian. The only great part about finding Masha in English is that now Eric and I know what they are saying, and that Masha is pretty funny for an annoying little girl.
Here's the kicker in all this though, Bradley will ask for his movie, often while he is in the middle of watching Masha or Peppa on the big tv. And for whatever reason, often sheer survival, he'll finally get it and then will proceed to go right to whatever he was just watching on the big tv. Apparently, my son has control issues.
I am not sure if this is good or bad for him. I can see where he very might need to have some areas of his life where he has control; because let's face it, there is very little he does have control over. Most the time it's not even his parents or his school with the control either, most days he is at the whim of his own body. Trying to temper his need to control some parts of his life with teaching him compliance to get along well with others in control of his life is proving the toughest of battles.
I am always pleased when he is willing to come with me for things I ask of him, sometimes carrying his IPad, sometimes he leaves it behind and comes back to it. This is something he only started in the last nine months or so. I know that seems like a long time, but things with Bradley build over time. Behaviors change and adapt but only in small increments that may or may not build on each other. We know he's changed because he has kept most of the changes and is showing us excellent progress as he keeps moving forward in his abilities and his capabilities. I'm not sure it will ever move as fast as we would like, but as long as progress is happening in whatever increments that Bradley will give us, we'll take.
Time to swap the IPad for Pajamas and call it a night with a few books, the old fashioned kind that mom reads, not a computer generated voice. ;-). Have a great night all!
31 for 21...Challenging to Bring Awareness and Acceptance for Down syndrome!
Tuesday, October 17, 2017
Careful What You Sign Up For!
October 17, 2017
Even though we don't do a lot of planning ahead because so many of our plans go awry or get cancelled at the last minute...I still sometimes have to plan ahead. And for my efforts I really think I get very close to an ulcer. I couldn't be more ridiculous if I tried, I mean seriously! Let's see... coming up we have a special night to honor our oldest as she receives her Academic letter for Varsity level Academics. She's doing this as a Sophomore, having accomplished the standards as a freshman. Yeah, we're a little bit proud of her. She's part of the Individual competition portion of the Academic Decathalon at school because they already had six people over the GPA of 3.9, they have to round the team out with the rest of the GPA markers apparently. Huh? So my kiddo just got kind of punished for having too high a GPA? Uh-huh...okay, whatever. She is getting honored on Thursday night. We will be watching our younger daughter get punished for being too good at Volleyball at 3:30 that day, then rushing on over to watch with great pride as Madison is recognized for her work. Since there are no Athletics at her school, this is the letter that will grace her Letterman's jacket. So we'll order that too and by Spring when it's too hot to wear she'll have it sitting in her closet waiting for the next cold spell, like December or January her Junior year to wear it. The timing couldn't be more perfect! Where did I leave that sarcasm font? Why am I being this way? Maybe because they want the kids to wear their Monarchs pride, but yet things like class rings or charms are relegated to ordering in Senior year and wearing them for one semester before school is over. Good grief really? My plan, and I don't see an ulcer in my future on this one, is to order her ring at the end of this school year so she can enjoy it for her Junior and Senior years. That's right sports fan, Momma is busting out of the box on this one!
And did you catch that part about my other kid being punished for being too good? Yeah, here's the scoop on that. It actually has nothing to do with whether or not she plays in the game. Surprised you didn't I? Nope, not the mom taking the bitter pill over here. No, because she is considered to be the equivalent of a Varsity player in the Coach's brain, she doesn't get to paractice because the Coach doesn't want her starters to be tired for games. Go ahead, go back and re-read that, I'll wait.
So while the other girls are practicing, she has six sit out, including my daughter, so that they aren't tired for the games, then doesn't play them. Wait, correction, doesn't play them together. Last game, she put two starters on the floor with two "JV" type players, and two "Fresh/Soph" type players. Then changed them out to the same equivalents in the second game and then the third game to fifteen that means nothing but is intended to let girls that are learning get some real competitive game time experience. So today, we are playing an undefeated team, that will likely stay undefeated if she chooses this method of player assignment. I'm thinking she will because she was literally bubbling over with how excited she was by her strategy in the last game, against a team that was 0-3. Today will be painful to watch. Thursday will be just as painful because the girls are playing the same team that already beat them, back when she wanted to make a point and played her "Fresh/Soph" team against them and we lost the whole thing... or was that her "JV" team? Not sure it matters anymore. I choose to gather my chicks and herd them out the door as soon as the game is over and not bother to talk to the coach, I am not one to hold my tongue; my filtering system has apparently been broken somewhere along the way and no one can find a part that old to fix it...best if I just keep walking.
Which brings me back to the idea that we can't wait for Club Season to start. Sydney is chomping at the bit wanting a real coach, while Madison is in a holding pattern just waiting for a chance to play more competitive ball. But with the Club Season comes some new wrinkles for me, and I don't mean in my clothing. You'd think by now I'd have a head of gray hair, but I don't. Club Season just might do it for me though.
We know already that Sydney's team is going to a tournament in Orlando, Florida in June. Looking at Madison's schedule, we know that if her team wins a bid to go the Junior National Qualifiers, she will be in Detroit in June as well. What might happen in our house is that Mom will take Sydney to Florida, while Dad works and Madison keeps Bradley when he isn't in school until Dad gets home from work. And then Bradley will be with Mom and Sydney for Dad to take Madison to Detroit. Hmmm... okay, a potential plan. Or this could happen... Sydney is at her tournament from the 16th to the 20th of June. Then the age groups of 15's, 17's and 18's are in tournament at the same place, with the 16's and the other half of the 18's age groups are going from the 25 to 28th. Anybody else see that large gap there in the middle? If Madison's team doesn't win a bid, they are going to FL. If that happens then we are living in Florida for almost two weeks. Currently, I am trying to figure out how late we can possibly get to Floriday because Sydney starts play on the 17th but Madison has SoCAl Finals on the 16th. Guess who will have to fly separate! No safety in numbers for this crew, or at least, more hands to help carry all the gear to take Bradley from Los Angeles to Florida.
He has to have a car seat and a stroller, sorry folks, his stamina is such that he can't make it all day...okay over a good twenty minute walk. (Despite Dad and I taking him for walks to build him up, one of us has to carry him home). He has a nebulizer, a lot of medicine. Diapers, because I'm not counting on my miracle skills to get him potty trained in the next decade let alone how many months. Miracles happen, but I am counting on the diapers until I don't have too. And then there is his Pediasure and his pump. I can try to Bolus him every night and every feed, but how irresponsible would I be if I didn't have his pump in case the Bolus wasn't working or he got sick because the change of weather or too many germs, or whatever other million things that go wrong, go wrong. His pump has to go too. His food weighs a good 16 pounds, 32 pounds for two cases. Five a day, fourteen days... math says 70 cans? Holy Crap, I feel the ulcer already. Forty eight pounds of extra luggage, what could possibly go wrong? I can see our bags going through x-ray now, each one with another portion of his Pediasure, the girls lugging extra weight with them in their bags, so fun!
Getting through Security is already giving me Hives. He has to have his Pediasure, how do I get THOSE through Security, and he has to have enough to last in case our luggage takes a detour without us. And then I keep seeing these lovely stories of airlines being absolutely the worst of humanity when it comes to our kids. I guess I should feel better, at least they aren't just targeting the disabled anymore, they are going after anyone they don't like. Still... The scenarios are not pretty running through my head.
And then here at home. We have a zoo now. All because one of the adults in this house (yeah okay me) agreed to get one of the kids in our house a rabbit as she had been promised, and because the other one really didn't have a pet of her own because one cat chose that other girl and one cat chose that adult with the rabbit thing... we have to make sure that we come home to live animals. Rabbits eat all their food everyday. You can't just leave a whole bag out and wish them luck! The cats I've considered, but they both would eat it all the food in the first two days then be so fat they'd just melt that right off in the next twelve...really a win-win for them. No, that's not good either. In their overly burdened state they'd probably dump their water and that would be the end.
At some point, there is a no turning back, no refund moment on tickets and hotel etc. that's what scares me the most. If Bradley suddenly can't go, then what do we do? Without a disposable income of excess money, that can be catastrophic for us.
I know that people do this, and they do it successfully every day. I don't know any of those people, but it doesn't mean they don't exist. Challenges are challenges and they must be overcome. I just have to figure out how to do it. So while this is milling around in the back of my mind, and believe me, I see me as the exhausted hamster lying on a wheel that just keeps turning without me running, sort of flopping me around... This week, I am watching Sydney maybe play some volleyball, and I am watching Madison be recognized for a truly amazing achievement, and both these girls have worked incredibly hard for what I will see this week. This week I am honored to be there to watch it happen, the great and the other stuff. Just to be there to be their very proud mom. And maybe Bradley won't quite understand the moments, but he'll understand very well when their enthusiasm bubbles over and they hug and hold onto him for pictures and for hugs and love. He gets that part, and he truly loves that part too. The rest will come in time, or so I hope. June will roll around whether I like it or not, and one way or another, events will fall into place and more than likely some poor soul at the airline we choose and the hotel we choose will be so grateful they won't have to answer my numerous inquiries that they might have fruit or flowers waiting for me on my way home. It could happen!
We knew life with Bradley would bring Challenges, and we knew that with two sisters, life would bring even more...turns out they aren't the real challenges, life is the Challenge and successfully chartering the path is the true work. Turns out they are the fun part of the challenge, getting there is maybe not as much fun, but it sure is an interesting path. Surely Bradley will be okay sharing his Tums with me over the next few months. Right?! UGH!!!!!
Even though we don't do a lot of planning ahead because so many of our plans go awry or get cancelled at the last minute...I still sometimes have to plan ahead. And for my efforts I really think I get very close to an ulcer. I couldn't be more ridiculous if I tried, I mean seriously! Let's see... coming up we have a special night to honor our oldest as she receives her Academic letter for Varsity level Academics. She's doing this as a Sophomore, having accomplished the standards as a freshman. Yeah, we're a little bit proud of her. She's part of the Individual competition portion of the Academic Decathalon at school because they already had six people over the GPA of 3.9, they have to round the team out with the rest of the GPA markers apparently. Huh? So my kiddo just got kind of punished for having too high a GPA? Uh-huh...okay, whatever. She is getting honored on Thursday night. We will be watching our younger daughter get punished for being too good at Volleyball at 3:30 that day, then rushing on over to watch with great pride as Madison is recognized for her work. Since there are no Athletics at her school, this is the letter that will grace her Letterman's jacket. So we'll order that too and by Spring when it's too hot to wear she'll have it sitting in her closet waiting for the next cold spell, like December or January her Junior year to wear it. The timing couldn't be more perfect! Where did I leave that sarcasm font? Why am I being this way? Maybe because they want the kids to wear their Monarchs pride, but yet things like class rings or charms are relegated to ordering in Senior year and wearing them for one semester before school is over. Good grief really? My plan, and I don't see an ulcer in my future on this one, is to order her ring at the end of this school year so she can enjoy it for her Junior and Senior years. That's right sports fan, Momma is busting out of the box on this one!
And did you catch that part about my other kid being punished for being too good? Yeah, here's the scoop on that. It actually has nothing to do with whether or not she plays in the game. Surprised you didn't I? Nope, not the mom taking the bitter pill over here. No, because she is considered to be the equivalent of a Varsity player in the Coach's brain, she doesn't get to paractice because the Coach doesn't want her starters to be tired for games. Go ahead, go back and re-read that, I'll wait.
So while the other girls are practicing, she has six sit out, including my daughter, so that they aren't tired for the games, then doesn't play them. Wait, correction, doesn't play them together. Last game, she put two starters on the floor with two "JV" type players, and two "Fresh/Soph" type players. Then changed them out to the same equivalents in the second game and then the third game to fifteen that means nothing but is intended to let girls that are learning get some real competitive game time experience. So today, we are playing an undefeated team, that will likely stay undefeated if she chooses this method of player assignment. I'm thinking she will because she was literally bubbling over with how excited she was by her strategy in the last game, against a team that was 0-3. Today will be painful to watch. Thursday will be just as painful because the girls are playing the same team that already beat them, back when she wanted to make a point and played her "Fresh/Soph" team against them and we lost the whole thing... or was that her "JV" team? Not sure it matters anymore. I choose to gather my chicks and herd them out the door as soon as the game is over and not bother to talk to the coach, I am not one to hold my tongue; my filtering system has apparently been broken somewhere along the way and no one can find a part that old to fix it...best if I just keep walking.
Which brings me back to the idea that we can't wait for Club Season to start. Sydney is chomping at the bit wanting a real coach, while Madison is in a holding pattern just waiting for a chance to play more competitive ball. But with the Club Season comes some new wrinkles for me, and I don't mean in my clothing. You'd think by now I'd have a head of gray hair, but I don't. Club Season just might do it for me though.
We know already that Sydney's team is going to a tournament in Orlando, Florida in June. Looking at Madison's schedule, we know that if her team wins a bid to go the Junior National Qualifiers, she will be in Detroit in June as well. What might happen in our house is that Mom will take Sydney to Florida, while Dad works and Madison keeps Bradley when he isn't in school until Dad gets home from work. And then Bradley will be with Mom and Sydney for Dad to take Madison to Detroit. Hmmm... okay, a potential plan. Or this could happen... Sydney is at her tournament from the 16th to the 20th of June. Then the age groups of 15's, 17's and 18's are in tournament at the same place, with the 16's and the other half of the 18's age groups are going from the 25 to 28th. Anybody else see that large gap there in the middle? If Madison's team doesn't win a bid, they are going to FL. If that happens then we are living in Florida for almost two weeks. Currently, I am trying to figure out how late we can possibly get to Floriday because Sydney starts play on the 17th but Madison has SoCAl Finals on the 16th. Guess who will have to fly separate! No safety in numbers for this crew, or at least, more hands to help carry all the gear to take Bradley from Los Angeles to Florida.
He has to have a car seat and a stroller, sorry folks, his stamina is such that he can't make it all day...okay over a good twenty minute walk. (Despite Dad and I taking him for walks to build him up, one of us has to carry him home). He has a nebulizer, a lot of medicine. Diapers, because I'm not counting on my miracle skills to get him potty trained in the next decade let alone how many months. Miracles happen, but I am counting on the diapers until I don't have too. And then there is his Pediasure and his pump. I can try to Bolus him every night and every feed, but how irresponsible would I be if I didn't have his pump in case the Bolus wasn't working or he got sick because the change of weather or too many germs, or whatever other million things that go wrong, go wrong. His pump has to go too. His food weighs a good 16 pounds, 32 pounds for two cases. Five a day, fourteen days... math says 70 cans? Holy Crap, I feel the ulcer already. Forty eight pounds of extra luggage, what could possibly go wrong? I can see our bags going through x-ray now, each one with another portion of his Pediasure, the girls lugging extra weight with them in their bags, so fun!
Getting through Security is already giving me Hives. He has to have his Pediasure, how do I get THOSE through Security, and he has to have enough to last in case our luggage takes a detour without us. And then I keep seeing these lovely stories of airlines being absolutely the worst of humanity when it comes to our kids. I guess I should feel better, at least they aren't just targeting the disabled anymore, they are going after anyone they don't like. Still... The scenarios are not pretty running through my head.
And then here at home. We have a zoo now. All because one of the adults in this house (yeah okay me) agreed to get one of the kids in our house a rabbit as she had been promised, and because the other one really didn't have a pet of her own because one cat chose that other girl and one cat chose that adult with the rabbit thing... we have to make sure that we come home to live animals. Rabbits eat all their food everyday. You can't just leave a whole bag out and wish them luck! The cats I've considered, but they both would eat it all the food in the first two days then be so fat they'd just melt that right off in the next twelve...really a win-win for them. No, that's not good either. In their overly burdened state they'd probably dump their water and that would be the end.
At some point, there is a no turning back, no refund moment on tickets and hotel etc. that's what scares me the most. If Bradley suddenly can't go, then what do we do? Without a disposable income of excess money, that can be catastrophic for us.
I know that people do this, and they do it successfully every day. I don't know any of those people, but it doesn't mean they don't exist. Challenges are challenges and they must be overcome. I just have to figure out how to do it. So while this is milling around in the back of my mind, and believe me, I see me as the exhausted hamster lying on a wheel that just keeps turning without me running, sort of flopping me around... This week, I am watching Sydney maybe play some volleyball, and I am watching Madison be recognized for a truly amazing achievement, and both these girls have worked incredibly hard for what I will see this week. This week I am honored to be there to watch it happen, the great and the other stuff. Just to be there to be their very proud mom. And maybe Bradley won't quite understand the moments, but he'll understand very well when their enthusiasm bubbles over and they hug and hold onto him for pictures and for hugs and love. He gets that part, and he truly loves that part too. The rest will come in time, or so I hope. June will roll around whether I like it or not, and one way or another, events will fall into place and more than likely some poor soul at the airline we choose and the hotel we choose will be so grateful they won't have to answer my numerous inquiries that they might have fruit or flowers waiting for me on my way home. It could happen!
We knew life with Bradley would bring Challenges, and we knew that with two sisters, life would bring even more...turns out they aren't the real challenges, life is the Challenge and successfully chartering the path is the true work. Turns out they are the fun part of the challenge, getting there is maybe not as much fun, but it sure is an interesting path. Surely Bradley will be okay sharing his Tums with me over the next few months. Right?! UGH!!!!!
Monday, October 16, 2017
Rough Night!
October 16, 2017
Bradley had a rough night last night, he started retching and couldn't stop for quite a bit. In fact, until he could clear what was in his esophagus he couldn't settle down. Dad was up with us, and we finally had to give Bradley Zofran to try and calm down the retching and give his wrap some protection so he wouldn't unwrap it completely. He of course started an elevated temp, but it stayed relatively low. He's a 97.6 guy consistently, so we know that something slipped down into his lungs and his body went into attack mode once his temp started climbing into the 99 zone. But luckily he stayed there and finally managed to find the comfort necessary to get to sleep. I watched him sleep for quite a few minutes as if his very breathing held all the answers, and perhaps it did. When his breathing finally slowed and settled into a steadier rythym, I headed to my own bed. I was surprised to find Eric propped up in bed biding time playing a game on his phone. Sometimes he will go back to sleep quickly; but last night, he was waiting too. Last night; or rather this morning, he was waiting for the word from me that Bradley was settled and it was okay for us to head to sleep. I like to think there might be poetic reasons for this; but actually, he'd been dragged out of bed twice - practicality says to wait to try to sleep until you think there might be a chance you can actually stay asleep once you close your eyes. I get this whole heartedly because I have done this. When my girls were younger and learning to put themselves to sleep, I would slowly count during the time they cried and every time they paused I would start my counting over and then repeat. As long as the count between the start of a pause and the next cry was getting longer, I didn't plan my entrance. If the cries came faster, I would intercede and start over. It was absolutely no fun. But it only took a few days to get them more settled at bedtime.
Bradley used to put himself to sleep, it was amazing. In a house where we had one really tough bedtime kid and one really easy bedtime kid...it was stunning to find out that we actually had one horrifically hard bedtime kid, one okay bedtime kid and we actually got the easy wonder kid that minstrels would have written songs about. Bradley was easy. But things change and life changes and your kids grow up. And now, the girls are easy, and Bradley is another story.
I knew he and I would be spending time together in the middle of the night because he was falling asleep on the changing table while I was trying to get him ready for a bath. Forget the bath. Jammies then bed and one story later, he was asleep. Maybe I finished "Click, Clack Moo Cows That Type" more for my entertainment than his, but come on...cows that type, such a cute and funny book!
So we get him calmed down, and I get him cuddled and settled nad he goes to sleep, so we go to sleep. And I hear him at 3 in the morning...so I stagger out of bed and turn him around to go back into his room. He goes running to climb up on his bed and flop onto his pillow. Then he proceeds to laugh for the next forty-five minutes. Constant giggling, all the while he is fidgeting with anything by his feet. I am ultimately crammed at the foot of his bed, literally out of - well, foot shot, and he is still giggling. So I wait him out, and finally, he goes back to sleep. My cue to stagger back to my bed and fall back in and back to sleep relatively easily. When I hear him again at 5, I can't physically lift my head let alone get out of bed. I look at the clock, see that it's 5 and let him climb up between Eric and I. His usual style is to fall asleep with his head on Dad's head and his feet hanging over my back. It's amazing how you can learn to sleep in any given situation. We all slept until the alarms went off. In fact, some of us, meaning Bradley - slept until 6:50, lucky little bugger.
Though I had some concerns with him going to school, he was so back to his usual self. So I sent him off and he had a great day, worked so well and so hard and took a bit of a nap in the afternoon. Um, save those for home big guy, if you nap mom can nap with you remember?! What cracks me up is that he always falls asleep during technology. My techno junkie falls asleep during his most favorite subject of the day. And he does this pretty consistently, especially after long breaks. This school stuff is hard work! It's almost as bad as adulting. Shiver me timbers!
He was tired tonight, but I put him off a bit to send him to sleep closer to eight than seven, hey a mom can try to wrangle a little extra sleep time if she can. Probably won't matter, but I can still try. I don't like it when he doesn't sleep well because then he gets cranky and cranky is the worst possible thing for him. I hardly recognize him when he gets cranky, he doesn't wear that hat often. I like my silly, smiling, funny boy. I'd rather keep him. But hey, we are human and as such, we suffer crankiness and difficult days, by us and they happen to us. He is no different from you and me, he gets cranky and he gets difficult and has difficult days at times. If we could figure that out, if people could recognize that...there would be no need for blogging for 31 Days to bring Awareness, because the Acceptance would already be there. But that hasn't happened yet, so here's me closing out Day 16, hoping that my little boy has successfully fought off another land mine!
Have a great night all, be at peace, Monday is almost over! ;-).
Bradley had a rough night last night, he started retching and couldn't stop for quite a bit. In fact, until he could clear what was in his esophagus he couldn't settle down. Dad was up with us, and we finally had to give Bradley Zofran to try and calm down the retching and give his wrap some protection so he wouldn't unwrap it completely. He of course started an elevated temp, but it stayed relatively low. He's a 97.6 guy consistently, so we know that something slipped down into his lungs and his body went into attack mode once his temp started climbing into the 99 zone. But luckily he stayed there and finally managed to find the comfort necessary to get to sleep. I watched him sleep for quite a few minutes as if his very breathing held all the answers, and perhaps it did. When his breathing finally slowed and settled into a steadier rythym, I headed to my own bed. I was surprised to find Eric propped up in bed biding time playing a game on his phone. Sometimes he will go back to sleep quickly; but last night, he was waiting too. Last night; or rather this morning, he was waiting for the word from me that Bradley was settled and it was okay for us to head to sleep. I like to think there might be poetic reasons for this; but actually, he'd been dragged out of bed twice - practicality says to wait to try to sleep until you think there might be a chance you can actually stay asleep once you close your eyes. I get this whole heartedly because I have done this. When my girls were younger and learning to put themselves to sleep, I would slowly count during the time they cried and every time they paused I would start my counting over and then repeat. As long as the count between the start of a pause and the next cry was getting longer, I didn't plan my entrance. If the cries came faster, I would intercede and start over. It was absolutely no fun. But it only took a few days to get them more settled at bedtime.
Bradley used to put himself to sleep, it was amazing. In a house where we had one really tough bedtime kid and one really easy bedtime kid...it was stunning to find out that we actually had one horrifically hard bedtime kid, one okay bedtime kid and we actually got the easy wonder kid that minstrels would have written songs about. Bradley was easy. But things change and life changes and your kids grow up. And now, the girls are easy, and Bradley is another story.
I knew he and I would be spending time together in the middle of the night because he was falling asleep on the changing table while I was trying to get him ready for a bath. Forget the bath. Jammies then bed and one story later, he was asleep. Maybe I finished "Click, Clack Moo Cows That Type" more for my entertainment than his, but come on...cows that type, such a cute and funny book!
So we get him calmed down, and I get him cuddled and settled nad he goes to sleep, so we go to sleep. And I hear him at 3 in the morning...so I stagger out of bed and turn him around to go back into his room. He goes running to climb up on his bed and flop onto his pillow. Then he proceeds to laugh for the next forty-five minutes. Constant giggling, all the while he is fidgeting with anything by his feet. I am ultimately crammed at the foot of his bed, literally out of - well, foot shot, and he is still giggling. So I wait him out, and finally, he goes back to sleep. My cue to stagger back to my bed and fall back in and back to sleep relatively easily. When I hear him again at 5, I can't physically lift my head let alone get out of bed. I look at the clock, see that it's 5 and let him climb up between Eric and I. His usual style is to fall asleep with his head on Dad's head and his feet hanging over my back. It's amazing how you can learn to sleep in any given situation. We all slept until the alarms went off. In fact, some of us, meaning Bradley - slept until 6:50, lucky little bugger.
Though I had some concerns with him going to school, he was so back to his usual self. So I sent him off and he had a great day, worked so well and so hard and took a bit of a nap in the afternoon. Um, save those for home big guy, if you nap mom can nap with you remember?! What cracks me up is that he always falls asleep during technology. My techno junkie falls asleep during his most favorite subject of the day. And he does this pretty consistently, especially after long breaks. This school stuff is hard work! It's almost as bad as adulting. Shiver me timbers!
He was tired tonight, but I put him off a bit to send him to sleep closer to eight than seven, hey a mom can try to wrangle a little extra sleep time if she can. Probably won't matter, but I can still try. I don't like it when he doesn't sleep well because then he gets cranky and cranky is the worst possible thing for him. I hardly recognize him when he gets cranky, he doesn't wear that hat often. I like my silly, smiling, funny boy. I'd rather keep him. But hey, we are human and as such, we suffer crankiness and difficult days, by us and they happen to us. He is no different from you and me, he gets cranky and he gets difficult and has difficult days at times. If we could figure that out, if people could recognize that...there would be no need for blogging for 31 Days to bring Awareness, because the Acceptance would already be there. But that hasn't happened yet, so here's me closing out Day 16, hoping that my little boy has successfully fought off another land mine!
Have a great night all, be at peace, Monday is almost over! ;-).
Sunday, October 15, 2017
A Weekend of Friends
October 15, 2017
The quiet of Sunday, and the quieter the better. We headed to the Exchange to get some odds and ends for the girls and take them to lunch. And then fill up the car and head on back home. While Madison transcribed her notes from typical class notes to these really creative and colorful notes, Sydney pulled out her violin and spent some time with that and apparently I missed a few notes with her French Horn. I'm just happy to have her playing some tunes in some way, means she's not on her phone or her IPad.
While she and I were dancing to some Maroon 5 song that I like but can only understand like three words of, we worked on making dinner. My kid loves music, and right now she's totally into a Korean K-Pop band, "BTS". When she first talked about them I didn't realize they were a Korean band and was busy trying to understand the acronym, what was it... Bacon Tomato Sandwich? Big Time Sailor? Then she told me they were a Korean Band and I totally quit trying. Instead, I just sit back and enjoy the giddy excitement that she has for these twenty something boys that are almost too pretty to be real. I remember quite well when Madison started down her boy crazy - fan girl phase. For her it was One Direction...then Teen Wolf and The Flash! And I can't forget Sean Mendez and some other actors that makes her giddy with delight every time their names come up. Sydney doesn't like to admit it, but she has quite a few of the same likes: The Flash! For sure and they both love this Dylan O'Brien guy.
Much as we adults like to get together for these viewing parties to watch our favorite tv shows, the kids are no different. Madison's friends want to watch something I have only just heard of and have to research before I say either way. And Sydney's group wants to get together for Flash! They are all planning for the best nights and the best places and what snacks they need to make or bring etc. etc. It's quite cute, it's so 'normal' and oh so very different from what they've had the past few years, and quite frankly, different from what they were interested in the last few years. We've never said no, cause they've never asked. I'm good with this kind of crazy stuff, and once I spend some time looking at what the crazy show is that Madison wants to get into, I'll probably tell her it's okay too.
This is what I won't do though. As of yesterday, we have learned that Bradley has a real issue with not being allowed to get out of the car when we drop off his sisters or go to pick them up. Our new modis of operandi now entails phone calls to make sure girls are ready and prepared to walk out the door. Seems rude to the kids parents I know, but we aren't quite sure another method to allow for the girls to enjoy time with their friends and somehow avoid the incredible meltdown of tears and desperation that is coming from their brother right now. I don't know that this will last for long, perhaps it's only something quirky for this weekend, I mean he is a quirky little boy after all. But maybe he's developed a new response to events he can't control that makes us all pay.
And as we dropped off one girl and picked up another off and on a couple times this weekend; they were busy butterflies for sure, I realized something so incredibly sad and disconcerting. I cannot see any time in the near future when I will be dropping Bradley at a friend's house for a play date without me or Eric. I can't see a time when I get to chaperone him and a friend that has been dropped at our house for a movie night, or to watch their favorite show. Maybe right now I can't see it because I know it would be "Peppa Pig," or something that perhaps is not appropriate for someone else's six or seven year old kid; for example, "Pitch Perfect."
It doesn't really matter right now, he's not ready for playing with friends because his friends, his peers are also not ready. Or maybe it is just him. But when you think about all his medical issues it seems improbable that someone is brave enough to take him on without one of his parents as part of the equation. But mostly, I am trying to look ahead to when he's eighteen and wondering. I just wonder, what kind of picture will have formed around him and his life. I have always, always refused to look that far ahead, mostly because I have always had trouble trying to picture my kids at that age. The idea of Madison being eighteen is actually right around the corner, but I really can't imagine it clearly. My imagination is stilted in that way. So when I try to think about what Bradley's life might be like when he's eighteen I really haven't a clue, cause I can't even conjure a picture of what he might look like.
All I want is to have these things to worry about when he is eighteen. I want to have to consider how to encourage his social life to grow beyond his dad and I, possibly his sisters. I want to be worried about whether or not he should be considering moving away from us at some point in the next ten years or if we need to be thinking about a way to give him some independence and privacy by doing some remodel on our house for him. I want those worries. I want to look back at myself today and sigh with a soft laugh as I remember these days and worries and I want to have them all behind us, and irrevelant. Oh to only hope.
I want Bradley to have a band or a tv show that he's just as giddy about as his sisters...hopefully having moved past Peppa and onto someone or something that maybe other friends are excited about and want to have viewing parties with him. I want to see him dance in my kitchen with me listening to some band he loves just because he loves them. I know that Bradley is going to be much different from his sisters by virtue that he's a boy. And I know that there are going to be lots of other ways that they will differ, I'm not unrealistic, but it would be lovely if he had more ways that he is just like them. Ways that he gets to be a young boy that loves the same stuff as other young boys and gets to just be. I want him to just be happy, healthy, and living a lovely life that makes others look at him and see he's all those things along with a friend, I want them to see a friend. I want him to be a friend and have friends away from school, just like his sisters.
Lord, in ten and a half years ish, please let me laugh at my worries of today. Please! Amen.
Hope you had a great Sunday. Let the drudge of a new week begin, and maybe a gentler drudge than usual, we all deserve that.
The quiet of Sunday, and the quieter the better. We headed to the Exchange to get some odds and ends for the girls and take them to lunch. And then fill up the car and head on back home. While Madison transcribed her notes from typical class notes to these really creative and colorful notes, Sydney pulled out her violin and spent some time with that and apparently I missed a few notes with her French Horn. I'm just happy to have her playing some tunes in some way, means she's not on her phone or her IPad.
While she and I were dancing to some Maroon 5 song that I like but can only understand like three words of, we worked on making dinner. My kid loves music, and right now she's totally into a Korean K-Pop band, "BTS". When she first talked about them I didn't realize they were a Korean band and was busy trying to understand the acronym, what was it... Bacon Tomato Sandwich? Big Time Sailor? Then she told me they were a Korean Band and I totally quit trying. Instead, I just sit back and enjoy the giddy excitement that she has for these twenty something boys that are almost too pretty to be real. I remember quite well when Madison started down her boy crazy - fan girl phase. For her it was One Direction...then Teen Wolf and The Flash! And I can't forget Sean Mendez and some other actors that makes her giddy with delight every time their names come up. Sydney doesn't like to admit it, but she has quite a few of the same likes: The Flash! For sure and they both love this Dylan O'Brien guy.
Much as we adults like to get together for these viewing parties to watch our favorite tv shows, the kids are no different. Madison's friends want to watch something I have only just heard of and have to research before I say either way. And Sydney's group wants to get together for Flash! They are all planning for the best nights and the best places and what snacks they need to make or bring etc. etc. It's quite cute, it's so 'normal' and oh so very different from what they've had the past few years, and quite frankly, different from what they were interested in the last few years. We've never said no, cause they've never asked. I'm good with this kind of crazy stuff, and once I spend some time looking at what the crazy show is that Madison wants to get into, I'll probably tell her it's okay too.
This is what I won't do though. As of yesterday, we have learned that Bradley has a real issue with not being allowed to get out of the car when we drop off his sisters or go to pick them up. Our new modis of operandi now entails phone calls to make sure girls are ready and prepared to walk out the door. Seems rude to the kids parents I know, but we aren't quite sure another method to allow for the girls to enjoy time with their friends and somehow avoid the incredible meltdown of tears and desperation that is coming from their brother right now. I don't know that this will last for long, perhaps it's only something quirky for this weekend, I mean he is a quirky little boy after all. But maybe he's developed a new response to events he can't control that makes us all pay.
And as we dropped off one girl and picked up another off and on a couple times this weekend; they were busy butterflies for sure, I realized something so incredibly sad and disconcerting. I cannot see any time in the near future when I will be dropping Bradley at a friend's house for a play date without me or Eric. I can't see a time when I get to chaperone him and a friend that has been dropped at our house for a movie night, or to watch their favorite show. Maybe right now I can't see it because I know it would be "Peppa Pig," or something that perhaps is not appropriate for someone else's six or seven year old kid; for example, "Pitch Perfect."
It doesn't really matter right now, he's not ready for playing with friends because his friends, his peers are also not ready. Or maybe it is just him. But when you think about all his medical issues it seems improbable that someone is brave enough to take him on without one of his parents as part of the equation. But mostly, I am trying to look ahead to when he's eighteen and wondering. I just wonder, what kind of picture will have formed around him and his life. I have always, always refused to look that far ahead, mostly because I have always had trouble trying to picture my kids at that age. The idea of Madison being eighteen is actually right around the corner, but I really can't imagine it clearly. My imagination is stilted in that way. So when I try to think about what Bradley's life might be like when he's eighteen I really haven't a clue, cause I can't even conjure a picture of what he might look like.
All I want is to have these things to worry about when he is eighteen. I want to have to consider how to encourage his social life to grow beyond his dad and I, possibly his sisters. I want to be worried about whether or not he should be considering moving away from us at some point in the next ten years or if we need to be thinking about a way to give him some independence and privacy by doing some remodel on our house for him. I want those worries. I want to look back at myself today and sigh with a soft laugh as I remember these days and worries and I want to have them all behind us, and irrevelant. Oh to only hope.
I want Bradley to have a band or a tv show that he's just as giddy about as his sisters...hopefully having moved past Peppa and onto someone or something that maybe other friends are excited about and want to have viewing parties with him. I want to see him dance in my kitchen with me listening to some band he loves just because he loves them. I know that Bradley is going to be much different from his sisters by virtue that he's a boy. And I know that there are going to be lots of other ways that they will differ, I'm not unrealistic, but it would be lovely if he had more ways that he is just like them. Ways that he gets to be a young boy that loves the same stuff as other young boys and gets to just be. I want him to just be happy, healthy, and living a lovely life that makes others look at him and see he's all those things along with a friend, I want them to see a friend. I want him to be a friend and have friends away from school, just like his sisters.
Lord, in ten and a half years ish, please let me laugh at my worries of today. Please! Amen.
Hope you had a great Sunday. Let the drudge of a new week begin, and maybe a gentler drudge than usual, we all deserve that.
Saturday, October 14, 2017
Mixing the Good and the Bad
October 14, 2017
Bradley had one of THOSE days... both wonderful and troubling.
He wan't feeling very good. Any time we left him he would cry and cry, so much that his little voice was getting hoarse by the evening. We are troubled because we know it has to hurt his throat, so is his throat sore from crying or is his throat sore because he has come down with strep throat that has been running through his classroom? That's worse case, we're hoping that he is just fighting off the effects of his flu shot. The girls haven't shown any side effects or flu like symptoms, but they have a lot stronger immune systems than Bradley does. Of course, every new school year we have to wait for the first bout of illness to run through his classroom and we see how Bradley is going to be able to fight off each new round of bugs and germs. The trouble is that I get hopeful that each year he's going to be able to fight off each round, and each year he proves how vulnerable he is to this stuff. It's interesting actually, his teacher and the aides all say the equivalent to me; they get used to him looking so healthy and doing so well, then he'll come down with a mild cold that never stays mild and they just look at me in shock, commenting about how he goes south so quickly. Yeah, I know. Sigh.
So, we're a little troubled and keeping a close eye on Bradley to make sure he is not headed down a difficult road. He spent a lot of time doing two things today, walking between the living room and the kitchen constantly...and watching his movie. The walking back and forth gets frustrating because once you hit 10,000 steps on your Fitbit...I mean come on, how many more are truly necessary without looking like you're going for over-kill. And he only wants to sit and have one popsicle after another after another. The problem is, he knows how to open the freezer, pull out his popsicles and then sit on at the table expectantly. When you give him one, he goes and grabs another one. And then when that one is gone, he goes to grab another... we started cutting him off. It was all fun and games, except he would start to freeze his throat and then he starts to gag a bit. And there's the whole issue that he will only eat popsicles turning his nose up at any other food...uh...not enough calories to cover his dietary needs. So he started getting cut off of popsicles and only given them occasionally. But my kid is slick, after figuring out that the popsicles had disappeared from the freezer, he checked a couple times and just knew we'd done something shifty with them. He waited for his chance, and his first opportunity when one of the girls left the garage door unlocked, he was out the door and finding his coveted popsicles in the freezer in the garage. Good grief! We have to keep that door locked! Some families have to keep their garage door locked so that their little ones stay away from power tools; not our kid, he zeroes in on the popsicles.
So we get him to give up the popsicles for other food. He helps me get his mustard and lunch meat out of the fridge in order to make him a sandwich, and he eats those again. He has returned to his peaches with a vengeance like to the extent that I have to keep telling him one a day buddy, one a day. Same with the lemon pudding. He thinks that all he needs to eat is peaches and pudding. He's eating more again, but good God, the amount of time that he spends zeroed and focused on one thing with the refusal to have anything else is frustrating for us. But he did eat, so that's something.
And then there was the time we spent watching him with his movie. There are times he will choose to try to copy whatever movie he is watching. Yesterday he was trying to copy Boo from "Monster's Inc" - the part at the end where she's screaming and laughing and crying...really loud...while we were in a quiet doctor's office...while the doctor is listening to my daughter's lungs and trying not to laugh at my son. Today it was "Pitch Perfect" and he was trying to copy the hand signals...luckily all the clean ones, and then trying to match pitch if you will, and even trying to say a few of the same sayings...again, luckily the clean phrases. Good times indeed. It was so hard to not laugh and let him know we were watching because as soon as he knows that we are watching he stops dancing, signing, or mimicking. I think he gets shy. But I think it's about the cutest thing ever.
So he's sleeping now, for a little while anyway. And then he'll be up visiting me at some point, but hopefully a good night's sleep and one more day away from the flu shot and he'll be recovering and not feeling so bad...or he'll feel worse and we'll be visiting the doctor on Monday to find out where we are with him. We just have to do that once in a while. With him having allergy shots in the past almost year, he has been stronger and has been sick less often...here's hoping that he fights off the strep that hit his classroom and keeps healthy. We can certainly hope. His little voice is always cute, it's even super cute when it's hoarse, but I hope he leaves that behind tomorrow and gives me his little whispers that lets me hear his voice and the quiet little words that he gives me. Love that little guy and all the stuff he has to tell me...hands or whispers...or the occasional really loud yell that echoes a bit. HAHA...
Life is about the good and the bad and it's about the days that it's all mixed together. Today was a day like that. Meeting the Challenges here at home and in the middle of this 31 For 21 Blog Challenge. Have a good night all!
Bradley had one of THOSE days... both wonderful and troubling.
He wan't feeling very good. Any time we left him he would cry and cry, so much that his little voice was getting hoarse by the evening. We are troubled because we know it has to hurt his throat, so is his throat sore from crying or is his throat sore because he has come down with strep throat that has been running through his classroom? That's worse case, we're hoping that he is just fighting off the effects of his flu shot. The girls haven't shown any side effects or flu like symptoms, but they have a lot stronger immune systems than Bradley does. Of course, every new school year we have to wait for the first bout of illness to run through his classroom and we see how Bradley is going to be able to fight off each new round of bugs and germs. The trouble is that I get hopeful that each year he's going to be able to fight off each round, and each year he proves how vulnerable he is to this stuff. It's interesting actually, his teacher and the aides all say the equivalent to me; they get used to him looking so healthy and doing so well, then he'll come down with a mild cold that never stays mild and they just look at me in shock, commenting about how he goes south so quickly. Yeah, I know. Sigh.
So, we're a little troubled and keeping a close eye on Bradley to make sure he is not headed down a difficult road. He spent a lot of time doing two things today, walking between the living room and the kitchen constantly...and watching his movie. The walking back and forth gets frustrating because once you hit 10,000 steps on your Fitbit...I mean come on, how many more are truly necessary without looking like you're going for over-kill. And he only wants to sit and have one popsicle after another after another. The problem is, he knows how to open the freezer, pull out his popsicles and then sit on at the table expectantly. When you give him one, he goes and grabs another one. And then when that one is gone, he goes to grab another... we started cutting him off. It was all fun and games, except he would start to freeze his throat and then he starts to gag a bit. And there's the whole issue that he will only eat popsicles turning his nose up at any other food...uh...not enough calories to cover his dietary needs. So he started getting cut off of popsicles and only given them occasionally. But my kid is slick, after figuring out that the popsicles had disappeared from the freezer, he checked a couple times and just knew we'd done something shifty with them. He waited for his chance, and his first opportunity when one of the girls left the garage door unlocked, he was out the door and finding his coveted popsicles in the freezer in the garage. Good grief! We have to keep that door locked! Some families have to keep their garage door locked so that their little ones stay away from power tools; not our kid, he zeroes in on the popsicles.
So we get him to give up the popsicles for other food. He helps me get his mustard and lunch meat out of the fridge in order to make him a sandwich, and he eats those again. He has returned to his peaches with a vengeance like to the extent that I have to keep telling him one a day buddy, one a day. Same with the lemon pudding. He thinks that all he needs to eat is peaches and pudding. He's eating more again, but good God, the amount of time that he spends zeroed and focused on one thing with the refusal to have anything else is frustrating for us. But he did eat, so that's something.
And then there was the time we spent watching him with his movie. There are times he will choose to try to copy whatever movie he is watching. Yesterday he was trying to copy Boo from "Monster's Inc" - the part at the end where she's screaming and laughing and crying...really loud...while we were in a quiet doctor's office...while the doctor is listening to my daughter's lungs and trying not to laugh at my son. Today it was "Pitch Perfect" and he was trying to copy the hand signals...luckily all the clean ones, and then trying to match pitch if you will, and even trying to say a few of the same sayings...again, luckily the clean phrases. Good times indeed. It was so hard to not laugh and let him know we were watching because as soon as he knows that we are watching he stops dancing, signing, or mimicking. I think he gets shy. But I think it's about the cutest thing ever.
So he's sleeping now, for a little while anyway. And then he'll be up visiting me at some point, but hopefully a good night's sleep and one more day away from the flu shot and he'll be recovering and not feeling so bad...or he'll feel worse and we'll be visiting the doctor on Monday to find out where we are with him. We just have to do that once in a while. With him having allergy shots in the past almost year, he has been stronger and has been sick less often...here's hoping that he fights off the strep that hit his classroom and keeps healthy. We can certainly hope. His little voice is always cute, it's even super cute when it's hoarse, but I hope he leaves that behind tomorrow and gives me his little whispers that lets me hear his voice and the quiet little words that he gives me. Love that little guy and all the stuff he has to tell me...hands or whispers...or the occasional really loud yell that echoes a bit. HAHA...
Life is about the good and the bad and it's about the days that it's all mixed together. Today was a day like that. Meeting the Challenges here at home and in the middle of this 31 For 21 Blog Challenge. Have a good night all!
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