December 30, 2012
We'd been walking a thin line between ill and health with Bradley, and we did it for almost two months. It wasn't something we wanted, but something that felt like it was on a slippery slope for us, the harder I tried to get him healthier the more he declined. In November, he had these tonsils that were huge and sported spots, but the ENT that he had didn't worry about them too much. But the swollen tonsils forced Bradley's tongue out more, his feeding seemed to slow, like he wasn't interested in swallowing anything larger than a pureed food. The idea of chewing, less of a thrill than it had been. One rude ENT was more than I could take and I switched his ENT's. To make a long story short it's like this: I can take a rude staff if the doctor is worth it; the moment the doctor is rude to me; I change. My son does not have to mean everything to you all the time, but for the fifteen minutes he is before you, that's when he better mean everything. So we switched to the Pediatric ENT at UCLA, turns out she's the Head of the department, but she's also really nice. The plan was to take Bradley's tonsils, his adenoids...put in ear tubes and do the Brain Stem Assessment to determine once and for all if our son has any sort of hearing loss. This is important for all the obvious reasons, but our boy tends to panic at certain sounds especially with vibration. So don't laugh with him against your shoulder, he can't handle the vibration of your laughter. Oh and at the time he had a little bit of fluid on his right ear. That fluid grew exponentially until his ear drum burst three days later. What ensued from there on out is the stuff of a parent's nightmare. The reaction to really strong antibiotics, the onset of croup and the immune system compromise that led to Hives and Diarrhea to the point we were concerned he was dumping. You see, simple tummy flu with diarrhea is never simple with Bradley; so this reaction just creates the worst possible reactions in his tummy. He dropped a pound and a half in a week, pounds he can't afford to lose, pounds we worked really hard to accumulate on him.
We spent the next few weeks in and out of the hospital, phone calls over the weekend, phone calls to the Peds GI in Santa Barbara, all desperately trying to prevent further weight loss, further illness, a trip to the hospital for IV rehydration... and that croupy cough wouldn't go away and became worse. The week before Christmas, it became deep and wet. The air stopped moving in his lungs and we started around the clock nebulizer treatments; which Bradley hates! My son is incredibly strong already, and my son is a fighter - Thank you God! - but trying to give him a Nebulizer treatment is a workout. A few in the middle of the night on day two he started to sleep halfway through and those were heavenly. Despite our best efforts though, Saturday am he was awake and he seemed to be breathing very shallow. He was gagging and retching, choking on mucus that I could not suction out or successfully vent enough from his tummy to prevent the retching that can lead to the unraveling of the precious Fundoplication that makes it so he can eat. With nothing else to do; Eric took Bradley to the ER and I sat here at the house waiting with the girls. There is nothing like those hours waiting...I took care of my Farm on Facebook, and built my castle...then couldn't do anything more as the hours dragged on, so I wrapped the rest of the kids' Christmas presents, and when Eric sent the text that said "Pneumonia" I packed my bag. At 6 am I called my mom and asked her to come, and I waited while they were trying to transport my son to the hospital and my mom was making her way to us. I didn't see him until 11:20am. They had to attack the pneumonia with antibiotics and we waited and watched as they fought the pneumonia and the dumping as his digestive system fought against the antibiotics.
I stayed Saturday night, and then because he had the time off; Eric stayed Sunday night and Monday night. We knew that if they kept Bradley passed Christmas day I would have to stay till the weekend nights because Eric would have to go into work in the mornings. Eric and Bradley spent Christmas Eve in the hospital and I left them feeling broken. I couldn't figure out how to be with Bradley and the girls at the same time. The hospital only allowed one parent to stay each night, even though Bradley was in a private room. The docs were fantastic, the nurses...really horrible. But, Christmas morning the doc came in and discharged Bradley so we could bring him home. As Christmas miracles go; well this was a pretty big one. When we walked in the door with Bradley his sisters started crying, both of them. I knew Madison would, as she is a weeper and our most emotional. I knew that things had been as tough as I had feared when Sydney wept like she did. Not hysterical, but uncontrolled and from her soul. And my heart broke a little for them; these two kids that were so strong and so flexible about their life - and yet with each of these episodes with Bradley I wonder if their flexibility will be tapped out and one of them will break. For Eric and I - Every breath carries a prayer, please God let this be the last time; let Bradley's body be as strong as his heart and soul from this moment on. Amen.
How did Bradley adjust to being home? He walked over and dove into a present that Santa had left for him. He unwrapped almost all of that one; but after that he was pretty happy to just tear the bows off of his presents and let mom unwrap for him. He was pretty tired after all. Now post Hospital five days, he coughs maybe once a day and the rattle is gone from his breath. He's doing fantastic! Oh and as for that starting of Pre-school in a couple weeks? No, not right now. Bradley will do his Pre-school at home and then in the Spring we'll revisit the idea of going off to join a Pre-school class. For now, we just have to get him healthy, the rest will have to come when it comes.
Sunday, December 30, 2012
Monday, December 10, 2012
The Journey Towards School
We spent the morning with the School District Psychologist. Looking back I can see where she is hailed for being so great, she truly is great. She was engaging with Bradley and she moved him quickly from one little test to the other and didn't give him time to get too far off the path. Sure Bradley discovered the joy of blue plastic coffee cups and wouldn't let them go until she persuaded him to give them up for the white plastic bowls that were so intriguing...yeah, well then he wouldn't give those up either...where does that leave us I wonder? You could see the wheels turning in her head as she moved him through his tasks and made her notes...I couldn't help but wonder what she was writing. Have I done enough? In my head I know where the girls were when they went to school and I know he's not there at all. I mean they went somewhere around 4 years old and the "pre-school" Sydney went to for drop in care in Japan was not actually teaching all that much more than socialization. But socialization is truly important and he hasn't been getting too much of that. He can hold his own with older kids, he rules the roost with his two sisters, but how he'll be with other kids I am not so sure. I have seen him try to pull a baby into his lap because he is purely fascinated, but as for playtime, well - not yet. We've encountered kids at the playground but I've watched the moms turn away and I have watched as the little ones are just too fast for Bradley. At the moment of play initiation, he's not quite ready to play. By the time he figures it out they are already on their way to other tasks and he's left playing with me. Although I rock as a playmate, my higher stature is not conducive to encouraging play with other little people.
Things are set to change in January, and yet they might not. We have been preparing Bradley to start Pre-school with the School District after he turns 3. He turns 3 on January 9th, where on earth did the time go? All along the way the Therapists that have been working with Bradley have been giving warnings to the school to let them know that there might be the possibility that Bradley might not be ready for school out of the home. He is still a bit fragile. Right now it is up to his pediatrician to give the final say, not that he doesn't listen to me, he does - but he is even more cautious than I am. I feel like this decision is in good hands. :-) Anyway, we thought he was going to be good to go, I mean the last few colds he has had he's not gagged or retched, so we haven't had to change his feeds at night, all good signs. And then last week he ruptured his eardrum. Yep, he had a sleepless night and a lot of tears and since he could only tell me he "Hurt" with his signs but wouldn't say where, I chose the high road, I gave him Ibuprofen. He fell out and got a few hours sleep, was a little cranky that morning but not more than a sleepless night should cause and I thought perhaps it was a tooth? Yeah, not the first time I've been wrong. Later that day, my boy is giggling playing with me and I look over and he has stuff coming out of his ear. It is one of those moments of shock, I've never seen this before, where your mind takes a moment to actually think and try to determine if there is in any way a positive reason for this gunk to be coming out of his ear. Considering he does not have any Tubes in his ears the answer is a simple, Nope. The only good thing for the rupture is that the pressure build up is over. He doesn't hurt anymore.
Strong antibiotics and ear drops to help him through this, and his pediatrician is looking at Eric and I going..."School huh? Well, I guess we'll just have to see about that won't we?" So perhaps our little guy will start school in the Spring once all the gunk has passed through the school and the Spring can bring some better days for him to try this school thing. We're not certain as yet, but it's on the table. I think at this point we'll be more surprised if they clear him to go for even two out of five of the days before Spring.
Tomorrow he has even more Assessments for school. It seems like that's all we get to do right now. The school comes in for their Assessments and then his Therapists have been doing their Assessments every time they come. I now dislike the word "Assessment" simply because in our life it has become trite. I have to allow them to assess where he is not and try not to intercede with all the things that he CAN do. Turns out they aren't so interested in what he can do - and I am not naive, I understand why; but the constant focus on what he cannot do is also like having someone sitting on your shoulder with this constant mantra running through your head, "Did you forget he has Down syndrome? Well, we want to remind you that he has Down syndrome. There's stuff he can't do, there's stuff he won't learn." And you can only knock that little devil off your shoulder so many times and beat the snot out of him before the good angel on the other side gets all angry at you. But it took her a bit to notice you were being violent because she's over there marveling at all the stuff he's doing and just how downright cute he is. But eventually, she noticed, and now I have to be good and try to ignore that little demon on my shoulder making my life Hell.
I know that there will be limitations to Bradley's life. Until one of my kid's becomes a Rocket Scientist or a Neurosurgeon, I know it's possible they could do that....but I know my girls can't break into the NFL or Major League Baseball, and though miffed about baseball, I'm okay about it too. But I am not entirely certain that Sydney won't be President someday like she plans, so I have to leave a wide field of options open for my kids. I try to be positive and let Bradley take the path he is meant to take and keep the doors opening for him. He has to clear the obstacles, I can't clear all of them, but if he can clear them, then I have to make sure each door comes open. I don't want to delude any of us on what he can do, but today - I don't know what all he'll be able to do in his future so I don't see the wrong in trying to prepare him for anything, to encourage all of us that he can do great things. Are his great things going to be what you think is great? Perhaps not. Maybe his great things are to simply live a great life with independence and purpose. Not so different from what I want from my own life. Do I want to write the next great American Novel? Undecided, I just like to write. But I have to plug away at what I enjoy so that he knows that he should plug away at what he enjoys...so that my girls know that they need to work and fight and plug away at what they will most enjoy. My approach is not that different between the kids, I expect them to do their best, as long as they do that, I'm pretty happy.
My little boy did his best today and he will try his best tomorrow. If his level is more two year old than almost three, then that's okay too. I can just keep offering the knowledge to him and he can take it as he can, bringing it into his brain for processing and for keeping. In a couple of weeks, we will have his "IEP - Individualized Education Plan" in hand, and for at least three months we won't be talking about this all that much. The mantra can fall off my shoulder with all of my self doubt and give me a break for a few months and Bradley and I can just work on learning whatever comes next in the world of learning that is before us.
I have to be honest though, that little Devil is not going to quit my shoulder, fueled by my own sense of not doing enough, not doing it right, somehow falling short where Bradley needs me most - he just picks a new mantra to whisper in my ear. For some reason though, my little Good angel on the other shoulder ignores the fights that I have with the little snot. She knows that I am doing my Best, and with that knowledge she thinks these fights provide some excellent exercise for me.
Things are set to change in January, and yet they might not. We have been preparing Bradley to start Pre-school with the School District after he turns 3. He turns 3 on January 9th, where on earth did the time go? All along the way the Therapists that have been working with Bradley have been giving warnings to the school to let them know that there might be the possibility that Bradley might not be ready for school out of the home. He is still a bit fragile. Right now it is up to his pediatrician to give the final say, not that he doesn't listen to me, he does - but he is even more cautious than I am. I feel like this decision is in good hands. :-) Anyway, we thought he was going to be good to go, I mean the last few colds he has had he's not gagged or retched, so we haven't had to change his feeds at night, all good signs. And then last week he ruptured his eardrum. Yep, he had a sleepless night and a lot of tears and since he could only tell me he "Hurt" with his signs but wouldn't say where, I chose the high road, I gave him Ibuprofen. He fell out and got a few hours sleep, was a little cranky that morning but not more than a sleepless night should cause and I thought perhaps it was a tooth? Yeah, not the first time I've been wrong. Later that day, my boy is giggling playing with me and I look over and he has stuff coming out of his ear. It is one of those moments of shock, I've never seen this before, where your mind takes a moment to actually think and try to determine if there is in any way a positive reason for this gunk to be coming out of his ear. Considering he does not have any Tubes in his ears the answer is a simple, Nope. The only good thing for the rupture is that the pressure build up is over. He doesn't hurt anymore.
Strong antibiotics and ear drops to help him through this, and his pediatrician is looking at Eric and I going..."School huh? Well, I guess we'll just have to see about that won't we?" So perhaps our little guy will start school in the Spring once all the gunk has passed through the school and the Spring can bring some better days for him to try this school thing. We're not certain as yet, but it's on the table. I think at this point we'll be more surprised if they clear him to go for even two out of five of the days before Spring.
Tomorrow he has even more Assessments for school. It seems like that's all we get to do right now. The school comes in for their Assessments and then his Therapists have been doing their Assessments every time they come. I now dislike the word "Assessment" simply because in our life it has become trite. I have to allow them to assess where he is not and try not to intercede with all the things that he CAN do. Turns out they aren't so interested in what he can do - and I am not naive, I understand why; but the constant focus on what he cannot do is also like having someone sitting on your shoulder with this constant mantra running through your head, "Did you forget he has Down syndrome? Well, we want to remind you that he has Down syndrome. There's stuff he can't do, there's stuff he won't learn." And you can only knock that little devil off your shoulder so many times and beat the snot out of him before the good angel on the other side gets all angry at you. But it took her a bit to notice you were being violent because she's over there marveling at all the stuff he's doing and just how downright cute he is. But eventually, she noticed, and now I have to be good and try to ignore that little demon on my shoulder making my life Hell.
I know that there will be limitations to Bradley's life. Until one of my kid's becomes a Rocket Scientist or a Neurosurgeon, I know it's possible they could do that....but I know my girls can't break into the NFL or Major League Baseball, and though miffed about baseball, I'm okay about it too. But I am not entirely certain that Sydney won't be President someday like she plans, so I have to leave a wide field of options open for my kids. I try to be positive and let Bradley take the path he is meant to take and keep the doors opening for him. He has to clear the obstacles, I can't clear all of them, but if he can clear them, then I have to make sure each door comes open. I don't want to delude any of us on what he can do, but today - I don't know what all he'll be able to do in his future so I don't see the wrong in trying to prepare him for anything, to encourage all of us that he can do great things. Are his great things going to be what you think is great? Perhaps not. Maybe his great things are to simply live a great life with independence and purpose. Not so different from what I want from my own life. Do I want to write the next great American Novel? Undecided, I just like to write. But I have to plug away at what I enjoy so that he knows that he should plug away at what he enjoys...so that my girls know that they need to work and fight and plug away at what they will most enjoy. My approach is not that different between the kids, I expect them to do their best, as long as they do that, I'm pretty happy.
My little boy did his best today and he will try his best tomorrow. If his level is more two year old than almost three, then that's okay too. I can just keep offering the knowledge to him and he can take it as he can, bringing it into his brain for processing and for keeping. In a couple of weeks, we will have his "IEP - Individualized Education Plan" in hand, and for at least three months we won't be talking about this all that much. The mantra can fall off my shoulder with all of my self doubt and give me a break for a few months and Bradley and I can just work on learning whatever comes next in the world of learning that is before us.
I have to be honest though, that little Devil is not going to quit my shoulder, fueled by my own sense of not doing enough, not doing it right, somehow falling short where Bradley needs me most - he just picks a new mantra to whisper in my ear. For some reason though, my little Good angel on the other shoulder ignores the fights that I have with the little snot. She knows that I am doing my Best, and with that knowledge she thinks these fights provide some excellent exercise for me.
Monday, November 26, 2012
Keeping Failure in Perspective
Not sure what the fascination is with the DVD and VHS cases that draws kids, but it's similar to flies to honey, or ants to any room in our house right now. Just know, that's a lot of ants and a lot of hassle. But that's really here nor there, the idea here is this: little kids love to pillage the orderly and prettily organized shelves that we have painstakingly spent the time to alphabetize and organize in a way that quickly makes absolutely no sense whatsoever. It's a gift and in their minds it is their right. And perhaps it is a right of passage. Both my girls did it, so it's a good thing that my son has moved into his rightful place as heir to the chaos that we call our Video Tower. Here's a problem though - where the girls were told over and over to stop and they got it; Bradley is not as great at catching on so quickly. A lot more No's involved and I don't enjoy that. Especially since he'll pretend utter distraction by something else then I'll look over and he's up to his elbows in the Blue-Ray drawer. Grr...
Being a true fan of Mickey Mouse, Bradley seems thrilled by the introduction of the Christmas movies that we let the kids start after Thanksgiving. Just as his older sister used to request the Mickey Mouse Christmas movies over and over and over and over....and well, over...you get the idea, I see that in him as well. That gives me comfort. I want to believe that I can encourage his brain to grow and to help him become as smart as he can be so that he can go as far as he could possibly want to go in his life. I watch him now and I don't always see the unable parts of him, I try to always focus on the able parts. I want to see him for who he is and not dwell on who he might not be able to be. I try not to let other's accomplishments make me start pushing him; and that's not so easy let me tell you. I learn that another kid at 4 with Down syndrome, knows her ABC's and I recognize that his strengths are right along those gender biased lines that make him great at his Gross motor skills. He can stack the blocks, throw the balls, kick them, kick the blocks...but as for ABCs...well, sometimes I can get the first three sounds...does that count? I mean how can the little boy say his ABCs when he isn't even verbal yet? It makes me want to push him to learn them so I know he at least recognizes them; but is that what I should be doing? My girls didn't learn their ABCs till they were 4, so I have been brushing along that same plan...I mean a plan of some kind is better than no plan, right? So in theory yes; however, Bradley has to start things earlier than we did with the girls if he can learn them somewhere along the same timelines. I realized last week that he is about a year or more behind other kids his age - already. A little guy who is ten months younger than Bradley was vastly developed past my little guy. I'm not sure it would have bothered me so much, if even at all if there hadn't been such an interest in the typically developing little boys that my daughters' so eagerly wanted to play with. I couldn't help but wonder where I've gone wrong with them. They ignored their brother and considered it punishment to have to play with him for a few minutes while their Dad and I helped out with the meal prep and clean-up. It was the worst half hour of my daughter's life, and that was all I asked for.
I spent the day taking turns with my husband taking care of Bradley. We were his playmates while our girls played with the others. And it gets worse, mine were the oldest, they were the ones setting the examples. And the example was that it was okay to ignore the little boy that is different. And I thought about all the readings I have done, all the research into how to help siblings with someone with special needs in their lives. How some kids rise to the occasion to be staunch defenders, exceptional advocates that love their siblings...and then there are those that comment that when they went off to college it was like they were finally free. Some didn't even mention that they had a sibling that is different, embarassment or their own need for normalcy doesn't matter so much really when the need was there. Because Bradley has so many health issues and the girls are so young, I don't put a lot of pressure on the girls to learn to care for their brother. When they ask I teach, but I don't assign them a job, I don't tell Madison to go vent her brother; don't ask her to change his diaper all that much either. When she says she wants too, I let her go. Once school started their desire to play with their brother changed too. No longer is it fun or cool to play with Bradley...or rather, if they can be crazy and take over his toys then they want to play, but if they have to let him play with his toy - well, they aren't interested. Again, where did this go so wrong? Do I think they love him, yes, I do. But now I worry about it, I worry about them, I worry about Bradley. There are others in our family who aren't interested in having anything to do with Bradley, and I feel sorry for them, but everyone must make their own choices regarding this situation. I try to keep him around the people that love him and want to be with him. That's not to different than for any of us is it? I want to be with the people that want me there. There are some who could care less if I am part of the group or not, I don't want to be there. I want to be where people are happy by my presence, that's what I want for my son.
So I'm trying to keep this in perspective. In another year, Bradley will have almost a whole year of pre-school under his belt and all the learning and developing that comes with it. Who knows, he might even be more verbal by then, if not he'll be a little better at expressing himself through his signs rather than just responding to me or Dad. Perhaps he'll be conversing with the girls by then and they'll feel more connected to him. And he and I are working on that alphabet and that potty training (for him, not me...I've managed both thanks!) so we'll just have to see.
I'm hoping this is just a phase, a single day of an epic fail that will not be a part of the lifetime they can have with their brother. Eric and I will be with him every step of the way, God willing that is for a good, long time.
Being a true fan of Mickey Mouse, Bradley seems thrilled by the introduction of the Christmas movies that we let the kids start after Thanksgiving. Just as his older sister used to request the Mickey Mouse Christmas movies over and over and over and over....and well, over...you get the idea, I see that in him as well. That gives me comfort. I want to believe that I can encourage his brain to grow and to help him become as smart as he can be so that he can go as far as he could possibly want to go in his life. I watch him now and I don't always see the unable parts of him, I try to always focus on the able parts. I want to see him for who he is and not dwell on who he might not be able to be. I try not to let other's accomplishments make me start pushing him; and that's not so easy let me tell you. I learn that another kid at 4 with Down syndrome, knows her ABC's and I recognize that his strengths are right along those gender biased lines that make him great at his Gross motor skills. He can stack the blocks, throw the balls, kick them, kick the blocks...but as for ABCs...well, sometimes I can get the first three sounds...does that count? I mean how can the little boy say his ABCs when he isn't even verbal yet? It makes me want to push him to learn them so I know he at least recognizes them; but is that what I should be doing? My girls didn't learn their ABCs till they were 4, so I have been brushing along that same plan...I mean a plan of some kind is better than no plan, right? So in theory yes; however, Bradley has to start things earlier than we did with the girls if he can learn them somewhere along the same timelines. I realized last week that he is about a year or more behind other kids his age - already. A little guy who is ten months younger than Bradley was vastly developed past my little guy. I'm not sure it would have bothered me so much, if even at all if there hadn't been such an interest in the typically developing little boys that my daughters' so eagerly wanted to play with. I couldn't help but wonder where I've gone wrong with them. They ignored their brother and considered it punishment to have to play with him for a few minutes while their Dad and I helped out with the meal prep and clean-up. It was the worst half hour of my daughter's life, and that was all I asked for.
I spent the day taking turns with my husband taking care of Bradley. We were his playmates while our girls played with the others. And it gets worse, mine were the oldest, they were the ones setting the examples. And the example was that it was okay to ignore the little boy that is different. And I thought about all the readings I have done, all the research into how to help siblings with someone with special needs in their lives. How some kids rise to the occasion to be staunch defenders, exceptional advocates that love their siblings...and then there are those that comment that when they went off to college it was like they were finally free. Some didn't even mention that they had a sibling that is different, embarassment or their own need for normalcy doesn't matter so much really when the need was there. Because Bradley has so many health issues and the girls are so young, I don't put a lot of pressure on the girls to learn to care for their brother. When they ask I teach, but I don't assign them a job, I don't tell Madison to go vent her brother; don't ask her to change his diaper all that much either. When she says she wants too, I let her go. Once school started their desire to play with their brother changed too. No longer is it fun or cool to play with Bradley...or rather, if they can be crazy and take over his toys then they want to play, but if they have to let him play with his toy - well, they aren't interested. Again, where did this go so wrong? Do I think they love him, yes, I do. But now I worry about it, I worry about them, I worry about Bradley. There are others in our family who aren't interested in having anything to do with Bradley, and I feel sorry for them, but everyone must make their own choices regarding this situation. I try to keep him around the people that love him and want to be with him. That's not to different than for any of us is it? I want to be with the people that want me there. There are some who could care less if I am part of the group or not, I don't want to be there. I want to be where people are happy by my presence, that's what I want for my son.
So I'm trying to keep this in perspective. In another year, Bradley will have almost a whole year of pre-school under his belt and all the learning and developing that comes with it. Who knows, he might even be more verbal by then, if not he'll be a little better at expressing himself through his signs rather than just responding to me or Dad. Perhaps he'll be conversing with the girls by then and they'll feel more connected to him. And he and I are working on that alphabet and that potty training (for him, not me...I've managed both thanks!) so we'll just have to see.
I'm hoping this is just a phase, a single day of an epic fail that will not be a part of the lifetime they can have with their brother. Eric and I will be with him every step of the way, God willing that is for a good, long time.
Saturday, November 10, 2012
It's About Independence!
November 10, 2012
Bradley has been showing signs of interest in this whole
potty training thing. We know that this
can be quite a huge struggle and then triumph for any kid, but especially our
little guy. So we got him a potty to get
him familiar with what it is and take away all the weirdness of the thing…well
as much as you can anyway. He seems to
like it and to be interested enough in it that he sits down every night on it
just before he gets into his bath. But
we’ve noticed the potty has some flaws, like maybe it wasn’t meant for little girls
more than little boys. Yeah sure, they
say it is for boys too and even include a diagram on how to use for little boys
in order to prevent overflow…but um…yeah, it takes a special yoga position to
get parts in the right place that would keep the stream in the pot. And as I am a girl and have successfully potty
trained two girls, I am a little unsure about training a little boy… I mean,
does guiding the hose hurt, or is that the idea behind this tiny opening for
boys, if you guide the hose down will he then shoot down and not out of the
potty? I’m willing to be the
consistency beacon on this mission, but I think that Eric should be taking
point on this; I mean it only seems fair.
That’s like our deal that when it comes time to have, you know, “The
Talk” I told Eric I would handle the girls and he gets to have the boys. That was when we first got together though,
before I learned I would be handling Algebra and “The Talk” twice. He only has to have it once, and we aren’t
even sure how much of “the Talk” he has to have with Bradley or when. But that is a conversation for another day,
years down the road. Whereas, Madison will be having her “Welcome to Puberty
Movie” in April and she and I will have to have some version of “the Talk” over
Spring Break. So yeah, I’m putting Eric
on this boy potty Point thing. So back
to this potty thing, this strange potty shape that is leaving us baffled is not
hypercritical; after all, we’re just starting.
So last night before bath we get him stripped down and the
girls come running, “We want to see Bradley go peepee in the potty for the
first time!” We’ve had him sitting down
before the bath every night for about ten days now.
The Realist in my thought, well…that’s gonna take a
while. But I merely said, “Well, don’t
be disappointed if it’s not tonight, we’re just getting started, but come on
in.”
We sat him down, should have worried more about that yoga
positioning, and I said to him, “Want to go peepee in the potty Bradley?”
Would you believe he did?
And would you also believe that we were so shocked that neither of us
even tried to stem the flow by moving him around. One: it was just “Wow, he’s going”. And then it was, Two: “HE’S GOING!” don’t mess up a good thing!
So we cheered and we fist bumped and we hugged him and as
unobtrusively as possible Dad and I both wiped a tear or two away, cause
believe it or not…this is just that big!
Will he go again tonight?
Don’t know, but we know he has, and that opens the door of
optimism. Perhaps with enough repetition
and work we can get this potty training under control before he starts
school. Will he be going to school in
big boy pants? Geesh, who knows? I didn’t think he’d even go yet, so who knows
what he’s going to do tomorrow. But I
know that I’m pretty proud of him right now.
And I feel like every other parent with their kid starting their first
foray into being independent in the bathroom.
It’s about being his own person, about being able to move a step away
from mom and dad. This is huge for every
kid, it doesn’t matter how many chromosomes you have when you do it. J
Monday, November 5, 2012
Bradley the Computer Hacker!!!
Welcome November!
November would usually bring in the rain, cooler temps, you know something that let's us here; even in Southern California, know that Winter is actually considering coming to our part of the country. Boiling today outside leads me to believe that winter has decided to hound the East Coast and thinks we are insignificant on the West Coast. And the East Coast has been hit hard of late, we're still praying for those affected.
So the kids have been sick. Sydney had a Sinus Infection, then Madison had a Virus, and now Bradley has some sort of something that is of course complicated and not easily treated...wouldn't want to be different by any means. The positive side of all this is that so far, (knocking on my head in lieu of wood) we haven't had to change his feeding schedule. Instead, he has taken to a 3am wake-up call for me. Not that he's crying or anything, instead he stands up in the crib and starts banging the feeding machine and pole against his crib. I wake up to this tapping coming from the baby monitor. All goes well, I get him back down then head back to bed, hopefully before Eric and I pass in the Hall as he goes in to turn him off at 5am...some mornings this has been close enough we've had to adjust alarms or just turn him off early. It's a little hard to think straight in the middle of the night; these are bigger decisions than one would think - well, in the middle of the night anyway.
In the midst of this - when not in the middle of hacking away; poor baby, Bradley has been quite extraordinary; in good ways and bad. Where to start? We use sign with him, I try to give him every sign I know if I say it - sometimes he understands and sometimes he answers back. So we're getting Bradley ready for bed, he's out of the bath and getting dried and dressed. I put his shirt on him, then he's holding his pants. So I ask him (all of the words I used signs for I'll put in brackets), "Do you [want] to put your pants [on]?"
Bradley laughs and is busy throwing his pants at me. I said, "[Help] [Mommy] put them [on]."
He starts making the sign for [car] to which I laugh and said, "[No] [car] pants [on]."
He signs car to me again and I laugh I realized that he tossed his pants with the police cars and fire trucks on them, so I laugh and go, "Oh, you want the [cars] [on]!"
Bradley laughs at me and points at me like, "Now you're getting it Mom!"
So that was the good part of Bradley's antics. Then there was today. I went into the kitchen trying to clean the floor, I hear no more Dinosaur toy in the living room with Bradley, so I peek around the corner and can't see him. Look over the couch and see him on squatting on something...hmm... closer look. He's standing on top of my laptop. Clever little turkey found my laptop, opened it, laid it on the floor, then stood on it. I rescued the laptop and check to see that he has somehow managed to copy the entire Desktop in order to make duplicate files there so that now there are left to right, top to bottom full!
So I fix that issue, then I go back to finish the floor. I come back in and attack the laundry. I manage to get it all folded and start putting it away - I walk back into the living room and I see all of Eric's clothes on the floor....grrrr..... let me refold all those clothes and then put them away... I finally get them all folded and start putting the rest of the clothes into the rooms they belong in. I come back in after I make my bed and put some of my clothes away, only to find that same little turkey now sitting up on MY DESK! He's sitting cross-legged in front of the desktop monitor, holding the mouse in his hand. The camera for the computer is GONE - lost behind the monitor. And then there is the monitor.
Now to tell you the rest of this story, let me just say that this is not the first time Bradley has attacked the computer on the desk. In fact, not too long ago he managed to turn the Display on the Monitor 90 degrees to the left - with just the mouse. So when Eric got home, he fixed that. So fast forward to today. Same position for Bradley, in front of the computer, and new position for the Display. He managed to turn the Display completely upside down! Good grief!!
So I took a picture and I sent it to Eric at work, then I told him "Now you know why this house is so messy all the time...and why it's gonna stay that way!" HAHA....
Ah Bradley...you keep life interesting! These were your stories today! I got some of Madison's and Sydney's stories waiting for another day!
Have a great night!
November would usually bring in the rain, cooler temps, you know something that let's us here; even in Southern California, know that Winter is actually considering coming to our part of the country. Boiling today outside leads me to believe that winter has decided to hound the East Coast and thinks we are insignificant on the West Coast. And the East Coast has been hit hard of late, we're still praying for those affected.
So the kids have been sick. Sydney had a Sinus Infection, then Madison had a Virus, and now Bradley has some sort of something that is of course complicated and not easily treated...wouldn't want to be different by any means. The positive side of all this is that so far, (knocking on my head in lieu of wood) we haven't had to change his feeding schedule. Instead, he has taken to a 3am wake-up call for me. Not that he's crying or anything, instead he stands up in the crib and starts banging the feeding machine and pole against his crib. I wake up to this tapping coming from the baby monitor. All goes well, I get him back down then head back to bed, hopefully before Eric and I pass in the Hall as he goes in to turn him off at 5am...some mornings this has been close enough we've had to adjust alarms or just turn him off early. It's a little hard to think straight in the middle of the night; these are bigger decisions than one would think - well, in the middle of the night anyway.
In the midst of this - when not in the middle of hacking away; poor baby, Bradley has been quite extraordinary; in good ways and bad. Where to start? We use sign with him, I try to give him every sign I know if I say it - sometimes he understands and sometimes he answers back. So we're getting Bradley ready for bed, he's out of the bath and getting dried and dressed. I put his shirt on him, then he's holding his pants. So I ask him (all of the words I used signs for I'll put in brackets), "Do you [want] to put your pants [on]?"
Bradley laughs and is busy throwing his pants at me. I said, "[Help] [Mommy] put them [on]."
He starts making the sign for [car] to which I laugh and said, "[No] [car] pants [on]."
He signs car to me again and I laugh I realized that he tossed his pants with the police cars and fire trucks on them, so I laugh and go, "Oh, you want the [cars] [on]!"
Bradley laughs at me and points at me like, "Now you're getting it Mom!"
So that was the good part of Bradley's antics. Then there was today. I went into the kitchen trying to clean the floor, I hear no more Dinosaur toy in the living room with Bradley, so I peek around the corner and can't see him. Look over the couch and see him on squatting on something...hmm... closer look. He's standing on top of my laptop. Clever little turkey found my laptop, opened it, laid it on the floor, then stood on it. I rescued the laptop and check to see that he has somehow managed to copy the entire Desktop in order to make duplicate files there so that now there are left to right, top to bottom full!
So I fix that issue, then I go back to finish the floor. I come back in and attack the laundry. I manage to get it all folded and start putting it away - I walk back into the living room and I see all of Eric's clothes on the floor....grrrr..... let me refold all those clothes and then put them away... I finally get them all folded and start putting the rest of the clothes into the rooms they belong in. I come back in after I make my bed and put some of my clothes away, only to find that same little turkey now sitting up on MY DESK! He's sitting cross-legged in front of the desktop monitor, holding the mouse in his hand. The camera for the computer is GONE - lost behind the monitor. And then there is the monitor.
Now to tell you the rest of this story, let me just say that this is not the first time Bradley has attacked the computer on the desk. In fact, not too long ago he managed to turn the Display on the Monitor 90 degrees to the left - with just the mouse. So when Eric got home, he fixed that. So fast forward to today. Same position for Bradley, in front of the computer, and new position for the Display. He managed to turn the Display completely upside down! Good grief!!
So I took a picture and I sent it to Eric at work, then I told him "Now you know why this house is so messy all the time...and why it's gonna stay that way!" HAHA....
Ah Bradley...you keep life interesting! These were your stories today! I got some of Madison's and Sydney's stories waiting for another day!
Have a great night!
Wednesday, October 31, 2012
DAY 31! Happy Down Syndrome Awareness Month!
Happy Halloween!!!
This was a big year for us. I know, every year since having our first child has been a big year for us each Halloween. We didn't do anything but hand out candy until Madison was three, but we suddenly cared a whole lot about this tradition of handing out candies to little kids. Each year it was the mark of where each kid had developed: the year where Madison wouldn't say anything, to the year she started saying "Trick or Treat". The year when suddenly Sydney was able to say "Trick or Treat!" and was willing to walk up to the door with one of us, then alone. Like last year, when there was no hesitation, but there was a lot of trying to keep up on Sydney's part and Madison was trying to leave her far behind. I had to reign her in and keep her with her sister; well, until the guy jumped out in a mask and scared Madison so bad she wouldn't leave my side, let alone her sister's...and well - Sydney wouldn't walk up to a door without me after that. Thanks a lot! And No! I didn't laugh all THAT hard, I am great at laughing in my head and not letting the girls see me laughing! Okay, that's a lie. I was laughing my butt off as I comforted them, then regaled the joys of the fun scares that Halloween brings. I am sure, HAD Eric been able to stop laughing, he would have also done this for them...but well, now you know why they wouldn't let go of me. :-) HAHA.
Last year was the first year that we split off. Eric took Bradley home early. Despite the blankets wrapping him up nice and tight, the cold air irritated his nose and face, and Bradley has never been happy about being cold on his face - ever! In Japan, he wouldn't make a fuss when I picked up the girls from school - until the cold, snowy air penetrated the layers of warmth around him and got his face cold, and then that was it! Anyway, Eric took him home while I walked the girls around a few more streets and let them milk the last drop of candy from the neighborhoods.
This year, the girls ran in unison from door to door, I didn't have to reign Madison in - I had to reign them both in so I didn't get left behind. Bradley started in the stroller, then we let him loose! And yes, he did the typical stuff: he ran everywhere but where we wanted him to go, he couldn't see the steps clearly so he crab walked some, and he wouldn't even consider carrying his bucket. But that's the thing isn't it: he did everything the same way the girls did it when they were just going trick or treating for the first time. And in the moment you were prepared to be frustrated, it hit you, he's just being a typical two year old kid! The only thing extra about Bradley tonight was the extra amount of cute he was exuding in his costume. And the great thing, the girls had the same extra going in their costumes. For at least one night, we were a family with three kids going trick or treating. A older sister that decided not to be scared and she bravely walked up to take a candy from the scary, masked man. She looked at him and said, "I know you're real!" Then she reached in for the candy, he jumped, she screamed, and they both laughed. Sydney would not go near him; not even with me holding her hand. So he was kind enough to hand her a piece of candy from the bowl. So Madison conquered that thing that held her back before and wouldn't let her enjoy the fun of the Halloween scare - she relaxed and jumped, or screamed, and then she laughed. Sydney is the one that recognized the scare for what it is, someone trying to scare her and she was not a fan or willing to take part. She hesitated at the darker houses and even her love of candy was not always enough to send her up the path. Madison needed to learn to relax and laugh at make believe scares of Halloween. Sydney needed to strengthen her self-preservation and her self-confidence. And they both needed to laugh! Oh how wonderful it was to hear them laughing.
As for Bradley, he just needed to know that he could be out there with all those other kids. He needs to get used to holding a hand and walking with his sisters or us. And he wasn't great at the hand holding for the most part, but he would take Sydney's hand and occasionally he would hold Madison's...but mostly, it was Sydney's. I think the fact she is closer to his size makes Bradley a little more inclined to always turn to her. Did he ever slow them down? Oh yeah. But did they complain? Actually, and surprisingly...No. They never did. The few times I asked them to wait for him, they both stopped, or came to him, and they went with him to the door. Bradley didn't say "Trick or Treat" so one of the girls would say it for him, and when we said, "Say thank you" he would try the sign but a bit overwhelmed, he sometimes would just wave. :-)
We started and ended the night together, and it was a little low on candy tonight. The High School kids and the Middle School kids came out early and they raided all the houses and the bowls left out so that there was no candy left for any other kids. It was strange and it was sad. I feel like the time is coming that there will continue to be fewer and fewer houses giving candy out each year, and what a shame that would be. The girls were excited to go get candy but they were crazy with wanting to hand out candy. Like the Pied Piper they led kids to our door to claim our candy before we could even get our door opened. Just as they fought over whose turn it was to ring the bell at the houses, they fought over whose turn it was to give candy. But that's all right, the moment that they start working together, Eric and I are moving out and taking Bradley far away where we'll be safe. We have an Emergency Plan.
So aside from Halloween, today was the last day of the 31 for 21 Challenge! It wasn't a big day for the girls. It wasn't that big for Bradley. But it was the last day of one of the most important Challenges I have ever taken part in. I wasn't sure I would be able to carve out the time or that I would be able to come up with 31 topics that I could write about for 31 days. I could have chosen 31 stories about Bradley - our journey with Bradley is one of those that could easily have dominated this blog for 31 days. I hit some of the more emotional moments in our life with him, I hit on some of the most harrowing moments in our life, and then I hit on that which makes this journey one worth taking. My sweet girls are the ones that keep this family moving in the right direction. If I don't see the greatness in my son - they show me. If I don't see the greatness in one of my girls - Bradley shows me. I should not be allowed to lose sight of the magnificence within each of my children; and before I began this Challenge, I worried that I did. I would get lost in the survival of each moment, and I do mean survival. It should never be that way, but in our house it has been. There are days where we've simply tried to survive. But here's the thing, that's not good enough. My Children are three truly amazing and exceptional individuals and they deserve to be seen for who they are everyday. I endeavor every day to try to deserve them, to be the mom they believed I could be and the reason they chose me. I wanted to bring into the spotlight Down syndrome, I wanted to introduce my son as the amazing little person that he is, and I wanted the world to know that it's okay to have a child with Down syndrome. I wanted to let someone who gets a prenatal diagnosis, to have a chance to learn about the life of a family that has a child who is medically fragile, who has an extra chromosome and yet through all that, in spite of all that - he is incredible and he is a valued member of our family. He is a necessary part of our family. So I didn't stay on just a Down syndrome topic throughout all 31 days. I decided from the start that the only way to let someone else know that it is okay to have this life, was to share the joy of how this life needs all three of these kids. The incredible kids that make this family work, the reasons we get up each day, the reasons we still laugh, the reasons that we know it's okay to cry - these three kids are the reasons for fighting each day to make every tomorrow a better one.
My heart is carried around inside my three children and my husband. I divide myself into loving them all with all I have. That can leave me weak - good night - you should see me blubber at some of those youtube videos...and well, commercials! UGH! Embarassing, but true. The results may suck, but the intent is good and it's important. Tonight is the last night of this challenge. I don't know if I'll write as often, but I may just check back in - the month may be over but the journey with these adventurers I call my children will not end. Just like the geese that land in the field every now and again to surprise us, ours is a small family that will keep on going, and there will be surprises. And we will know joy and sadness, but together we will survive all of it!
Happy Halloween! Safe night and good night to you all!
This was a big year for us. I know, every year since having our first child has been a big year for us each Halloween. We didn't do anything but hand out candy until Madison was three, but we suddenly cared a whole lot about this tradition of handing out candies to little kids. Each year it was the mark of where each kid had developed: the year where Madison wouldn't say anything, to the year she started saying "Trick or Treat". The year when suddenly Sydney was able to say "Trick or Treat!" and was willing to walk up to the door with one of us, then alone. Like last year, when there was no hesitation, but there was a lot of trying to keep up on Sydney's part and Madison was trying to leave her far behind. I had to reign her in and keep her with her sister; well, until the guy jumped out in a mask and scared Madison so bad she wouldn't leave my side, let alone her sister's...and well - Sydney wouldn't walk up to a door without me after that. Thanks a lot! And No! I didn't laugh all THAT hard, I am great at laughing in my head and not letting the girls see me laughing! Okay, that's a lie. I was laughing my butt off as I comforted them, then regaled the joys of the fun scares that Halloween brings. I am sure, HAD Eric been able to stop laughing, he would have also done this for them...but well, now you know why they wouldn't let go of me. :-) HAHA.
Last year was the first year that we split off. Eric took Bradley home early. Despite the blankets wrapping him up nice and tight, the cold air irritated his nose and face, and Bradley has never been happy about being cold on his face - ever! In Japan, he wouldn't make a fuss when I picked up the girls from school - until the cold, snowy air penetrated the layers of warmth around him and got his face cold, and then that was it! Anyway, Eric took him home while I walked the girls around a few more streets and let them milk the last drop of candy from the neighborhoods.
This year, the girls ran in unison from door to door, I didn't have to reign Madison in - I had to reign them both in so I didn't get left behind. Bradley started in the stroller, then we let him loose! And yes, he did the typical stuff: he ran everywhere but where we wanted him to go, he couldn't see the steps clearly so he crab walked some, and he wouldn't even consider carrying his bucket. But that's the thing isn't it: he did everything the same way the girls did it when they were just going trick or treating for the first time. And in the moment you were prepared to be frustrated, it hit you, he's just being a typical two year old kid! The only thing extra about Bradley tonight was the extra amount of cute he was exuding in his costume. And the great thing, the girls had the same extra going in their costumes. For at least one night, we were a family with three kids going trick or treating. A older sister that decided not to be scared and she bravely walked up to take a candy from the scary, masked man. She looked at him and said, "I know you're real!" Then she reached in for the candy, he jumped, she screamed, and they both laughed. Sydney would not go near him; not even with me holding her hand. So he was kind enough to hand her a piece of candy from the bowl. So Madison conquered that thing that held her back before and wouldn't let her enjoy the fun of the Halloween scare - she relaxed and jumped, or screamed, and then she laughed. Sydney is the one that recognized the scare for what it is, someone trying to scare her and she was not a fan or willing to take part. She hesitated at the darker houses and even her love of candy was not always enough to send her up the path. Madison needed to learn to relax and laugh at make believe scares of Halloween. Sydney needed to strengthen her self-preservation and her self-confidence. And they both needed to laugh! Oh how wonderful it was to hear them laughing.
As for Bradley, he just needed to know that he could be out there with all those other kids. He needs to get used to holding a hand and walking with his sisters or us. And he wasn't great at the hand holding for the most part, but he would take Sydney's hand and occasionally he would hold Madison's...but mostly, it was Sydney's. I think the fact she is closer to his size makes Bradley a little more inclined to always turn to her. Did he ever slow them down? Oh yeah. But did they complain? Actually, and surprisingly...No. They never did. The few times I asked them to wait for him, they both stopped, or came to him, and they went with him to the door. Bradley didn't say "Trick or Treat" so one of the girls would say it for him, and when we said, "Say thank you" he would try the sign but a bit overwhelmed, he sometimes would just wave. :-)
We started and ended the night together, and it was a little low on candy tonight. The High School kids and the Middle School kids came out early and they raided all the houses and the bowls left out so that there was no candy left for any other kids. It was strange and it was sad. I feel like the time is coming that there will continue to be fewer and fewer houses giving candy out each year, and what a shame that would be. The girls were excited to go get candy but they were crazy with wanting to hand out candy. Like the Pied Piper they led kids to our door to claim our candy before we could even get our door opened. Just as they fought over whose turn it was to ring the bell at the houses, they fought over whose turn it was to give candy. But that's all right, the moment that they start working together, Eric and I are moving out and taking Bradley far away where we'll be safe. We have an Emergency Plan.
So aside from Halloween, today was the last day of the 31 for 21 Challenge! It wasn't a big day for the girls. It wasn't that big for Bradley. But it was the last day of one of the most important Challenges I have ever taken part in. I wasn't sure I would be able to carve out the time or that I would be able to come up with 31 topics that I could write about for 31 days. I could have chosen 31 stories about Bradley - our journey with Bradley is one of those that could easily have dominated this blog for 31 days. I hit some of the more emotional moments in our life with him, I hit on some of the most harrowing moments in our life, and then I hit on that which makes this journey one worth taking. My sweet girls are the ones that keep this family moving in the right direction. If I don't see the greatness in my son - they show me. If I don't see the greatness in one of my girls - Bradley shows me. I should not be allowed to lose sight of the magnificence within each of my children; and before I began this Challenge, I worried that I did. I would get lost in the survival of each moment, and I do mean survival. It should never be that way, but in our house it has been. There are days where we've simply tried to survive. But here's the thing, that's not good enough. My Children are three truly amazing and exceptional individuals and they deserve to be seen for who they are everyday. I endeavor every day to try to deserve them, to be the mom they believed I could be and the reason they chose me. I wanted to bring into the spotlight Down syndrome, I wanted to introduce my son as the amazing little person that he is, and I wanted the world to know that it's okay to have a child with Down syndrome. I wanted to let someone who gets a prenatal diagnosis, to have a chance to learn about the life of a family that has a child who is medically fragile, who has an extra chromosome and yet through all that, in spite of all that - he is incredible and he is a valued member of our family. He is a necessary part of our family. So I didn't stay on just a Down syndrome topic throughout all 31 days. I decided from the start that the only way to let someone else know that it is okay to have this life, was to share the joy of how this life needs all three of these kids. The incredible kids that make this family work, the reasons we get up each day, the reasons we still laugh, the reasons that we know it's okay to cry - these three kids are the reasons for fighting each day to make every tomorrow a better one.
My heart is carried around inside my three children and my husband. I divide myself into loving them all with all I have. That can leave me weak - good night - you should see me blubber at some of those youtube videos...and well, commercials! UGH! Embarassing, but true. The results may suck, but the intent is good and it's important. Tonight is the last night of this challenge. I don't know if I'll write as often, but I may just check back in - the month may be over but the journey with these adventurers I call my children will not end. Just like the geese that land in the field every now and again to surprise us, ours is a small family that will keep on going, and there will be surprises. And we will know joy and sadness, but together we will survive all of it!
Happy Halloween! Safe night and good night to you all!
Tuesday, October 30, 2012
Day 30 - October is Almost Over!
How I Became Better at Being Me?
I can't believe that tomorrow is Halloween. I can't believe that tomorrow is ending this Challenge to flood you with Awareness for Down syndrome! But tomorrow always comes. I can remember in the hospital after having Bradley my battered heart wasn't sure which way was up and what step to take next. Everyone said to sleep of course, sleep when the baby sleeps. And I would try and fail...until I looked up at this clock in my room, it was the exact same clock I had at home; and I sat in the silence of the room listening to the steady breathing coming from Eric, and the soft breaths from the baby beside me; I watched the clock. To try and sleep, I would count the babies breaths until I realized my fear for him was amplified with every concentrated thought I put on him. By counting his breaths to help me sleep I was taking myself further from it, and making myself a nervous wreck at the same time. So I figured it would be better to let him sleep and think of other sheep to count; yeah but my sheep always have too much activity when I try to count them. I've never been able to do that, count sheep. I've always wondered about the lives of the sheep and would eventually fall asleep coming up with some wild adventure that I wanted to write about that didn't necessarily include sheep at all. But that January, in the midst of the confusion and worry; I couldn't come up with a story to write out in my head. By not knowing enough about my little baby, I couldn't devise an adventure for him in my imagination. Or rather, I tried but had the same effect on myself that I'd had counting his breaths. I'd put him on the ball field, then would put him on the sideline. Then I'd take and put him in school, but couldn't figure out what year, what age... what anything. And I was just as terrible at projecting his baby face into a big kid, or a teen-ager as I was with the girls. Like I did with Madison, when all I could see was her seven year old self calling home from College, then hanging up and running off to do adult things...well, here was this hours old baby that I was trying to do the same thingwith. It was literally sending me around the bend.
So I counted clock ticks. Yep, you read that right. The clock in the hospital room was doing the very thing that I can hear this clock here in our living room doing now, ticking...not loudly at all, but when you listen for it - you hear it perfectly. So I turned out the lights, and lay on my side facing Bradley's clear, plastic crib, and I breathed slowly and counted the ticks of the clock. I don't remember how high I got in the tick counts, I just know that eventually I would go to sleep and wake whenever a Nurse came in the room, or he needed to nurse...or whatever. And whenever it was time for me to sleep, this was how I did it - I counted clock ticks and didn't worry about thinking at all.
When we moved from Japan we stayed with my Dad for almost six months, and there was so much worry as Bradley's health started its slow decline south and for months and months I couldn't sleep well because I didn't have my clock to listen to at night, and we had a lot of worries. But Eric was with me daily and I didn't have to do anything solo, until he started his new job the next January - we were able to do everything together for Bradley. That gave us both a little more confidence, a lot more experience in the world of medicine and that prepared us for the journey ahead. We found a bagel shop we liked and we'd go in and have bagels and coffee a couple times a week when the girls were at school; it felt like dating again, only this time with a baby in tow. We needed one of us at work somewhere, but we sure enjoyed being together in those little moments. I miss them now, and I knew then I would...and because I was confident that one of us would get work soon; I would tell him, we're going to miss these bagel shop mornings! See there, I was right about that one.
Never think that life is not full of irony. You see I don't have a clock to tick away in my bedroom, I didn't even bother to hang it up because by the time we got into our own place, Bradley wasn't all that healthy so instead of thinking he was doing so well I'd be taking less trips to San Diego - I was taking more. Guess who started falling sleep as soon as her head hit the pillow? Yep, me. The trips didn't stop until the button was put in, and then sleep was a mere illusion and an occasional suggestion anyway. I've come along way since I delivered Bradley, and one more of those wonderful life experiences we've been given is this: sleep when, where, and however long you can. There are times now that I hit the pillow and fall asleep before I get my good night kiss from Eric. I have to literally sit up in bed, or lean on an elbow till he turns the light out, just so I'll be awake and remember my kiss. As it is, there are times he'll kiss me good-bye in the morning and I won't have memory of it, or move. Poor guy! But make no mistake, that little boy breathes different, or that machine gives a beep and I am up and running down the hall. And it's not just him, I hear Madison talking to somebody in her sleep and I'm off to hear if she's yelling at her sister or confessing her heart to a boy; both of which are common. Sydney? Surprisingly, she doesn't make much of a sound, night time is the only time you don't hear a peep out of her. If she wakes up she's standing beside me, slapping me on the back and scaring the crap out of me - no joke!
It's amazing how life changes you to accommodate the life you have to lead. I was a good mom when it was just the girls. If I am better now, it is only because Bradley needed a better mom than I was. If I am better now, it is because the girls needed me to be more than I was in order to be mom to all three of my oreos. Your kids make you the parent they need you to be; if you love them like you should, they'll shape you and teach you how to be more than you thought you could be. The teach us how to be better at being ourselves.
I can't believe that tomorrow is Halloween. I can't believe that tomorrow is ending this Challenge to flood you with Awareness for Down syndrome! But tomorrow always comes. I can remember in the hospital after having Bradley my battered heart wasn't sure which way was up and what step to take next. Everyone said to sleep of course, sleep when the baby sleeps. And I would try and fail...until I looked up at this clock in my room, it was the exact same clock I had at home; and I sat in the silence of the room listening to the steady breathing coming from Eric, and the soft breaths from the baby beside me; I watched the clock. To try and sleep, I would count the babies breaths until I realized my fear for him was amplified with every concentrated thought I put on him. By counting his breaths to help me sleep I was taking myself further from it, and making myself a nervous wreck at the same time. So I figured it would be better to let him sleep and think of other sheep to count; yeah but my sheep always have too much activity when I try to count them. I've never been able to do that, count sheep. I've always wondered about the lives of the sheep and would eventually fall asleep coming up with some wild adventure that I wanted to write about that didn't necessarily include sheep at all. But that January, in the midst of the confusion and worry; I couldn't come up with a story to write out in my head. By not knowing enough about my little baby, I couldn't devise an adventure for him in my imagination. Or rather, I tried but had the same effect on myself that I'd had counting his breaths. I'd put him on the ball field, then would put him on the sideline. Then I'd take and put him in school, but couldn't figure out what year, what age... what anything. And I was just as terrible at projecting his baby face into a big kid, or a teen-ager as I was with the girls. Like I did with Madison, when all I could see was her seven year old self calling home from College, then hanging up and running off to do adult things...well, here was this hours old baby that I was trying to do the same thingwith. It was literally sending me around the bend.
So I counted clock ticks. Yep, you read that right. The clock in the hospital room was doing the very thing that I can hear this clock here in our living room doing now, ticking...not loudly at all, but when you listen for it - you hear it perfectly. So I turned out the lights, and lay on my side facing Bradley's clear, plastic crib, and I breathed slowly and counted the ticks of the clock. I don't remember how high I got in the tick counts, I just know that eventually I would go to sleep and wake whenever a Nurse came in the room, or he needed to nurse...or whatever. And whenever it was time for me to sleep, this was how I did it - I counted clock ticks and didn't worry about thinking at all.
When we moved from Japan we stayed with my Dad for almost six months, and there was so much worry as Bradley's health started its slow decline south and for months and months I couldn't sleep well because I didn't have my clock to listen to at night, and we had a lot of worries. But Eric was with me daily and I didn't have to do anything solo, until he started his new job the next January - we were able to do everything together for Bradley. That gave us both a little more confidence, a lot more experience in the world of medicine and that prepared us for the journey ahead. We found a bagel shop we liked and we'd go in and have bagels and coffee a couple times a week when the girls were at school; it felt like dating again, only this time with a baby in tow. We needed one of us at work somewhere, but we sure enjoyed being together in those little moments. I miss them now, and I knew then I would...and because I was confident that one of us would get work soon; I would tell him, we're going to miss these bagel shop mornings! See there, I was right about that one.
Never think that life is not full of irony. You see I don't have a clock to tick away in my bedroom, I didn't even bother to hang it up because by the time we got into our own place, Bradley wasn't all that healthy so instead of thinking he was doing so well I'd be taking less trips to San Diego - I was taking more. Guess who started falling sleep as soon as her head hit the pillow? Yep, me. The trips didn't stop until the button was put in, and then sleep was a mere illusion and an occasional suggestion anyway. I've come along way since I delivered Bradley, and one more of those wonderful life experiences we've been given is this: sleep when, where, and however long you can. There are times now that I hit the pillow and fall asleep before I get my good night kiss from Eric. I have to literally sit up in bed, or lean on an elbow till he turns the light out, just so I'll be awake and remember my kiss. As it is, there are times he'll kiss me good-bye in the morning and I won't have memory of it, or move. Poor guy! But make no mistake, that little boy breathes different, or that machine gives a beep and I am up and running down the hall. And it's not just him, I hear Madison talking to somebody in her sleep and I'm off to hear if she's yelling at her sister or confessing her heart to a boy; both of which are common. Sydney? Surprisingly, she doesn't make much of a sound, night time is the only time you don't hear a peep out of her. If she wakes up she's standing beside me, slapping me on the back and scaring the crap out of me - no joke!
It's amazing how life changes you to accommodate the life you have to lead. I was a good mom when it was just the girls. If I am better now, it is only because Bradley needed a better mom than I was. If I am better now, it is because the girls needed me to be more than I was in order to be mom to all three of my oreos. Your kids make you the parent they need you to be; if you love them like you should, they'll shape you and teach you how to be more than you thought you could be. The teach us how to be better at being ourselves.
Monday, October 29, 2012
Day 29 - Down Syndrome Awareness Month!
Getting Ready!
After Bradley was born, and we'd had time to research and stop worrying he was gong to leave us before we even got to know him; we came to the realization that there was the possibility we would never be without our son. No one came out and said to us that he would be dependent on us for the rest of our lives, but I had known of a few adults with Down syndrome who lived at home and in all the research we read it said something along those lines, be prepared. This terrified me in a way that I found hard to understand completely, I mean understood parts of it, but not all of it. You see when Eric and I worked out some of our issues a few years before, one of those issues was the strong dependency that our other children had on us. Where I was the one holding on so very tightly, still tucking them in and still being the hovering mother - well, Dad was ready to ease them along that path to more independence. I wasn't ready and as an example, when he asked me how long I was going to tuck them in at night, I merely said, "Until they stop asking me too." It was that simple to me. I mean I couldn't then nor can I now picture my girls all grown up. I tried to imagine them off at College once, calling me from their Dorm room for fifteen minutes or an hour, if I was lucky, and then running off to do some of the things that I did in College, or (trying not to freak myself out) some of the things their Dad did when he was freshly new in the Navy. So after I sucked the air in and out of a brown, paper bag for a good five minutes, I just agreed with myself not to try to look that far ahead in my future. I agreed to try to not drive myself nuts with knowing that someday these beautiful girls of mine were going to move away from me and only spend a time on the phone or a few days visiting me now and again. I know that they could live close and see me everyday; but I am aware that these girls are destined for greatness and can't be handcuffed to their mother, no matter how much a part of her wants too. Of course, right now we discuss the probability that the girls will leave someday and they both give me panicked looks and trembling lips because they never want to leave us and we're right back to sucking on brown, paper bags, but for them. I just laugh and remind them it isn't tomorrow and when they are ready to go they will tell us, we're not going to tell them. It makes them feel better to know that they can be here forever if they want. They don't seem to mind that they'd have to do all their own chores and help out around the house if they stay...so I'm game. Why wouldn't I be? God has given me two strong and amazing girls - even as they flex their young minds and attitudes to test us; they are such a joy to have around.
And then along came Bradley and here I am looking at his future and the possibility that he may not have the choice to stay or go. Talk about your ultimate dilemmas...your complete and utter confusion. Here we are with two girls that are going to want to go and a boy that may want to go but may have to stay with us? What??? At the hospital I was flabbergasted by this conundrum. And would Eric and I be okay if that were the case, he hadn't been thrilled by the girls need for us...but had changed his opinion of it completely and been great about it the last year...how would he be with this revisiting of the issue - but on a lifetime scale? I worried and fretted - and soon learned it was foolish to fret and worry over. You see, I am the mom that loves the baby in the womb but doesn't Fall in love with the baby till out of the womb; Eric's the dad that loves and falls in love with the baby in the womb and willingly takes what we get. Regarding Bradley, "He's our baby, we love him." About Bradley probably never leaving us, "We'll get a convertible that seats three." It was just that simple. Granted the path is strewn with pitfalls and worry and tidbits of trouble; but really it's that simple. If the girls have moved on and Bradley has not or cannot, then we'll travel and live as a trio. That sounded good me to me, it felt good to me, and I stopped worrying quite so much. I still worry; because well, I'm really good at it. Here I was sad that my girls were going to move away and I didn't want them too, and then I was devastated that my son might not be able to move away if he wanted too - it felt like life was being so completely unfair - I mean geesh, throw me a bone Universe!
So fast forward to today...Bradley is 33 months old, a week shy of 34 months actually, and we are preparing to send him to Pre-School after he turns three in January. After all the talks and the research preparing for the worst, we have to send him to school...he HAS to leave me. Well, what the Hell? I get my mind all nicely wrapped around my boy hanging with me ad infinitum, and some Home Teacher tells me, "No, we're getting him ready for school!" Actually, we learned that when he was a couple months old, so it wasn't a complete shock about school, we've expected it. What shocked me are the countless stories that I see and read that are showing me that the odds are actually excellent that Bradley will be able to live, if not on his own, then with a special care giver type roommate. Huh? Let me get this straight, I wrapped my brain around the idea that at least one of my babies isn't going to move out on me, and now all his therapists and teachers are telling me that nope, he's got a great chance of being much more independent than that. Good Grief!!!
And to make it worse, I had to fill out these assessment forms today where I have to give the school district some idea of where he is developmentally. Turns a pretty good day into a downer, I mean what parent wants to sit there and concentrate on where their kid is NOT. Almost straight zeroes in speech. And I find that frustrating because he has so many signs...perhaps his words aren't coming through his mouth, but they are coming through his hands; shouldn't that count for something? Doesn't that mean he is a great communicator, but quiet about it (well sometimes anyway). Eric tells me that it's to make sure that he gets everything he needs at school, and I know he's right, he spends most of the time right - I just want them to acknowledge the skills he has, all the work he has put in to accomplish them, because it has been work, a lot of hard work. But the schools don't care what he knows, they want to know what they have to pay for and provide him. So I wasn't thrilled to do it, but I answered truthfully and I didn't toot Bradley's horn. And it sucked. But I know what he can do, I see his potential and I know that his teacher conferences in the future are going to be as positive as the ones we just had for the girls last week. It make take Bradley a little longer to figure it out, but he does and he will. He's pretty smart and he's pretty imaginative, and all in all, he keeps his brain working. I don't know how far he'll go, but then let's be honest, I don't know how far the girls will go. But they're all three going to go and they're going to have two very avid and very proud cheerleaders pushing them, pulling them if necessary, and always, always loving them.
After Bradley was born, and we'd had time to research and stop worrying he was gong to leave us before we even got to know him; we came to the realization that there was the possibility we would never be without our son. No one came out and said to us that he would be dependent on us for the rest of our lives, but I had known of a few adults with Down syndrome who lived at home and in all the research we read it said something along those lines, be prepared. This terrified me in a way that I found hard to understand completely, I mean understood parts of it, but not all of it. You see when Eric and I worked out some of our issues a few years before, one of those issues was the strong dependency that our other children had on us. Where I was the one holding on so very tightly, still tucking them in and still being the hovering mother - well, Dad was ready to ease them along that path to more independence. I wasn't ready and as an example, when he asked me how long I was going to tuck them in at night, I merely said, "Until they stop asking me too." It was that simple to me. I mean I couldn't then nor can I now picture my girls all grown up. I tried to imagine them off at College once, calling me from their Dorm room for fifteen minutes or an hour, if I was lucky, and then running off to do some of the things that I did in College, or (trying not to freak myself out) some of the things their Dad did when he was freshly new in the Navy. So after I sucked the air in and out of a brown, paper bag for a good five minutes, I just agreed with myself not to try to look that far ahead in my future. I agreed to try to not drive myself nuts with knowing that someday these beautiful girls of mine were going to move away from me and only spend a time on the phone or a few days visiting me now and again. I know that they could live close and see me everyday; but I am aware that these girls are destined for greatness and can't be handcuffed to their mother, no matter how much a part of her wants too. Of course, right now we discuss the probability that the girls will leave someday and they both give me panicked looks and trembling lips because they never want to leave us and we're right back to sucking on brown, paper bags, but for them. I just laugh and remind them it isn't tomorrow and when they are ready to go they will tell us, we're not going to tell them. It makes them feel better to know that they can be here forever if they want. They don't seem to mind that they'd have to do all their own chores and help out around the house if they stay...so I'm game. Why wouldn't I be? God has given me two strong and amazing girls - even as they flex their young minds and attitudes to test us; they are such a joy to have around.
And then along came Bradley and here I am looking at his future and the possibility that he may not have the choice to stay or go. Talk about your ultimate dilemmas...your complete and utter confusion. Here we are with two girls that are going to want to go and a boy that may want to go but may have to stay with us? What??? At the hospital I was flabbergasted by this conundrum. And would Eric and I be okay if that were the case, he hadn't been thrilled by the girls need for us...but had changed his opinion of it completely and been great about it the last year...how would he be with this revisiting of the issue - but on a lifetime scale? I worried and fretted - and soon learned it was foolish to fret and worry over. You see, I am the mom that loves the baby in the womb but doesn't Fall in love with the baby till out of the womb; Eric's the dad that loves and falls in love with the baby in the womb and willingly takes what we get. Regarding Bradley, "He's our baby, we love him." About Bradley probably never leaving us, "We'll get a convertible that seats three." It was just that simple. Granted the path is strewn with pitfalls and worry and tidbits of trouble; but really it's that simple. If the girls have moved on and Bradley has not or cannot, then we'll travel and live as a trio. That sounded good me to me, it felt good to me, and I stopped worrying quite so much. I still worry; because well, I'm really good at it. Here I was sad that my girls were going to move away and I didn't want them too, and then I was devastated that my son might not be able to move away if he wanted too - it felt like life was being so completely unfair - I mean geesh, throw me a bone Universe!
So fast forward to today...Bradley is 33 months old, a week shy of 34 months actually, and we are preparing to send him to Pre-School after he turns three in January. After all the talks and the research preparing for the worst, we have to send him to school...he HAS to leave me. Well, what the Hell? I get my mind all nicely wrapped around my boy hanging with me ad infinitum, and some Home Teacher tells me, "No, we're getting him ready for school!" Actually, we learned that when he was a couple months old, so it wasn't a complete shock about school, we've expected it. What shocked me are the countless stories that I see and read that are showing me that the odds are actually excellent that Bradley will be able to live, if not on his own, then with a special care giver type roommate. Huh? Let me get this straight, I wrapped my brain around the idea that at least one of my babies isn't going to move out on me, and now all his therapists and teachers are telling me that nope, he's got a great chance of being much more independent than that. Good Grief!!!
And to make it worse, I had to fill out these assessment forms today where I have to give the school district some idea of where he is developmentally. Turns a pretty good day into a downer, I mean what parent wants to sit there and concentrate on where their kid is NOT. Almost straight zeroes in speech. And I find that frustrating because he has so many signs...perhaps his words aren't coming through his mouth, but they are coming through his hands; shouldn't that count for something? Doesn't that mean he is a great communicator, but quiet about it (well sometimes anyway). Eric tells me that it's to make sure that he gets everything he needs at school, and I know he's right, he spends most of the time right - I just want them to acknowledge the skills he has, all the work he has put in to accomplish them, because it has been work, a lot of hard work. But the schools don't care what he knows, they want to know what they have to pay for and provide him. So I wasn't thrilled to do it, but I answered truthfully and I didn't toot Bradley's horn. And it sucked. But I know what he can do, I see his potential and I know that his teacher conferences in the future are going to be as positive as the ones we just had for the girls last week. It make take Bradley a little longer to figure it out, but he does and he will. He's pretty smart and he's pretty imaginative, and all in all, he keeps his brain working. I don't know how far he'll go, but then let's be honest, I don't know how far the girls will go. But they're all three going to go and they're going to have two very avid and very proud cheerleaders pushing them, pulling them if necessary, and always, always loving them.
Sunday, October 28, 2012
Day 28 - Last Sunday of Down Syndrome Awareness Month!
Day 28 - The Last
Sunday of the Challenge!
I can’t believe we’re coming to the end of the month…I
thought it would drag on and on…but it didn’t – it rushed like a waterfall…it
wasn’t a special Sunday really, just a typical Sunday of Football. And I know how mundane that sounds, but with
almost eight years in Japan and a time change that gave us football in the wee
hours of our Monday morning, and Monday night football on Tuesday morning…well,
you can probably understand why the novelty has yet to wear off for us. So we spent some quality football time
watching the Chargers embarrass themselves on live TV; again! And I know that the Chargers aren’t that much
to write home about but someone has to cheer for the underdog, and there has to
be at least one NFL team that plays Farm Team to get better players ready to
move onto better teams…it’s always been like this, I don’t see it changing any
time soon but since I am a fan of my Hometown team – I keep cheering for them
nonetheless! So anyway, after that Epic
fail we realized we are as yet pumpkin free in our house. The girls have been gifted little pumpkins
each and found a tiny one perfect for their brother but as for the family
pumpkin that would be the ultimate Jack O’Lantern to sit on our doorstep to
welcome the trick or Treaters come Halloween…that one hadn’t joined our family
as yet. So we decided that the last time we went to a
Pumpkin Patch Bradley was only ten months old and we didn’t get pictures of
him there, just the girls. It was
time. So we went off with our tablet in
order to try to capture some of the fun as Bradley experienced his first real
pumpkin patch.
First we examined pumpkins in the neat little rows that had
been set up for the Toddlers in the Toddler section – uh, examined, threw and
kicked. Perhaps if they weren’t so
ball-like he would have been less likely to toss them and try to kick
them. I predict great success for
Bradley in the following sports: soccer, baseball, football, and bowling –
might even have a future Curler in there…he showed some nice technique.
Well then we tried the maze, the straw bales
that created the maze kept getting pushed around by the kids and some of their
Dads running across the top of them so that poor Bradley at one point put his
arms up to me to be picked up because he was pretty sure we weren’t getting out
of there alive if we stayed at his level.
So we jumped a few bales and managed to finally make our way out of the
maze. I should have worn pants to
protect my legs, but at least he was in his overalls and was well prepared for the
rigors of escape.
From there he examined pumpkins again, and
with the same interest he had before the maze so we made a beeline for the toy
area. The slide was a hit, the toy house
was a hit, the hay bales stacked in a pyramid provided the perfect backdrop for
pictures if only Bradley hadn’t been so anti-straw at that point and the girls
could have looked somewhere near the camera at any given time. Oh well, they are kids and they acted like
kids and if you look close enough you might even recognize one or two of
them as ours.
We moved out from there, poor Bradley mostly stood and
stared at the thrashing groups of unruly children rushing around him and they
weren’t just his sisters so we knew it was time to give him a break and let him
vent off this experience in the relative quiet and definite safety of his
carseat. Did we find the perfect pumpkin
there? No, we didn’t make it to the
bigger pumpkin side, and the prices were tear inducing…we found the perfect
pumpkin at Ralphs…cause that’s the perfect place to buy a vegetable after
all. And when it came down to it, the
kids and I hung out in the car and left the search to dad. He found one outside that I was able to send
my thumbs up too, but the girls were too busy playing some game about piranhas
and spiders to notice he had even left the car, let alone not taken them on the
great pumpkin expedition. No worries
though, they were quite enthusiastic in their approval of the future Jack O’lantern
Burnett that dad found, so all is well in the kingdom. The girls are home for the next week for Fall
Break, so they are more hyped up now than they’ll be after trick or treating on
Wednesday…woohoo, can’t wait…so excited…so thrilled…so – oh boy what are we
going to do for a week??? HAHA…just
kidding. I enjoy their breaks, we
usually think of something fun to do even if it isn’t in the Epic area of the
chart. They both try to sleep late and
then spend their time reading, playing and catching up on the mellow stuff they
don’t get to do while they’re in school; it all works out well for us.
So we didn’t conquer the Pumpkin Patch in the way that most
people probably did this year; but we conquered it the way Bradley could this
year. He was healthy enough to give it a
good forty minute try this year and that was Huge for him. He was overwhelmed but not in tears, which is
a big deal for a two year old, and he voiced his disapproval at leaving which
is just another nice milestone for him.
The girls were given a taste of what their brother feels in the overwhelm
department as they were both practically manic until we reigned them in
too. How quickly such a place can really
mess with your head and throw you completely off balance. Interesting places Pumpkin Patches – once a
year is more than enough for me. Perhaps
I should stick to the once every two years, that feels a little better to
me. Guess we’ll just wait till next year
and see if the kids mention it, they didn’t last year so maybe I’ll get lucky
next year! J
Happy Sunday all. I
am off to continue my war against laundry and that ever growing pile of
unmatched socks!
Saturday, October 27, 2012
Day 27 - Down Syndrome Awareness Month is October!!!
Day 27 - Challenging the 31 for 21 Challenge!
When Bradley was two weeks old he slept through the night. After weeks of getting myself up every four hours to see if I could get him to wake up and eat - and failing...we decided we should let him wake up on his own and perhaps he would want to eat when he did. Bradley we were told, needed to the practice of nursing in order to get better at the task of feeding from the breast. I tried to wake him up in the middle of the night, and it wasn't that he was totally unhappy with the arrangement...the truth was, he didn't even wake up enough to have an opinion. At two weeks old, I let him sleep and he slept through the night. I woke up slowly and then sat straight up in bed - terrified! I bolted from the bed and I hovered over Bradley snug in his bassinet, sound asleep and perfect. I started to breathe again and waited till he woke up and then fed him a little more successfully. Bradley and I worked really hard at nursing because I was told that all of this was to encourage two things: his feeding and then his speech. By working his tongue during nursing he was supposed to be preparing for eating and talking. Bradley and I worked very hard at this job and he gave us seven months. Sadly, his esophagus issues started to attack his body and he couldn't find a position that allowed him to eat and not hurt. Nursing ended and all that hard work has been for naught...he is barely speaking and barely eating purees with a bit more texture...so much for future planning.
Over the first year and a half of his life, when Bradley was put to bed nine times out of ten, he went to sleep on his own. We were certain that we were being given a special gift because of all of his medical issues. One thing was easy and that was bedtime. Even as I type this I am laughing to myself. Once Bradley had the G-Tube, well the sleeping issue went south fast. At first, he was on the tube for so long we couldn't put him down until he was asleep, otherwise he stood up in his crib and that threatened to pull his button out. With a lot of work and patience, we now have him feeding from 10 pm until 5 am...we wanted him to forget that he is on a tube...and every time he gets completely wrapped up in the tubing - well, we always hope he is too sleepy to understand what has happened to him. So we got him down to seven hours at night to feed, we figured out how to reduce the amount of neck wrapping incidents, and even managed to get him in the right bedtime clothes to help with all of the above. I'm not sure that I was feeling smug...I don't usually do that. But I must have been feeling comfortable. I thought that I had everything under control, I thought that I had all the files filed properly, the authorizations in chronological order, all the claims accounted for. Only there are so many times that life itself likes to attack me when I'm not looking. Eric had some medical issues that left us reeling in anxiety and fear as we waited for time to pass and tests to happen and results to be given that carried good news (Thank God) - but somewhere in there, I missed my dates and a phone call...and one Friday night I trotted down the hall to set Bradley up for the night and realized...I had no more feeding bags for him. The floor literally fell out of my world. As I panicked and tried very hard to breathe, Eric had to talk me down from the side of the Empire State Building. I did the only thing I could do, I cried...really hard for like five minutes. Eric calmed me down, cause he always does...and then I went into survival mode. I called Walgreen's to make sure that a pharmacist would work on getting us a case of feeding bags the next day. Then I prepared 16 oz of Pediasure and was ready to get up all through the night to feed him every time he woke up. I was ready for my penance and willing to send back my nomination for Mother of the Year award.
And after months and months - almost a year of not sleeping through the night for him or his parents...Bradley slept for twelve hours straight! I woke up late and went immediately to check on him since I hadn't heard him all night. He woke up and smiled at me...clearly we had all needed the rest. The triumph was short lived though, he wouldn't eat much that whole day Saturday...we finally went to what I think might be his favorite restaurant for Mexican food on Saturday night. He ate through half of my plate; and that's when I felt like celebrating!
So sleep is iffy at best in our house. This week Sydney is vying with her brother to see who can be up the most and for the longest...She has a sinus infection and a cough...so she's up somewhere around 1 am coughing and 4 am with those crazy sinus infection dreams. Meanwhile, Bradley likes to see full dark and at 5 am when we take him off his pump, he's decided that that's the perfect time to start the day. Tonight I get full watch as Dad has a migraine...so since I just hooked him up for the night...I am too am turning in. Good night folks, may your dreams be sweet and your sleep be swift! And always, sleep fast - you never know how long you're going to get! ;-)
When Bradley was two weeks old he slept through the night. After weeks of getting myself up every four hours to see if I could get him to wake up and eat - and failing...we decided we should let him wake up on his own and perhaps he would want to eat when he did. Bradley we were told, needed to the practice of nursing in order to get better at the task of feeding from the breast. I tried to wake him up in the middle of the night, and it wasn't that he was totally unhappy with the arrangement...the truth was, he didn't even wake up enough to have an opinion. At two weeks old, I let him sleep and he slept through the night. I woke up slowly and then sat straight up in bed - terrified! I bolted from the bed and I hovered over Bradley snug in his bassinet, sound asleep and perfect. I started to breathe again and waited till he woke up and then fed him a little more successfully. Bradley and I worked really hard at nursing because I was told that all of this was to encourage two things: his feeding and then his speech. By working his tongue during nursing he was supposed to be preparing for eating and talking. Bradley and I worked very hard at this job and he gave us seven months. Sadly, his esophagus issues started to attack his body and he couldn't find a position that allowed him to eat and not hurt. Nursing ended and all that hard work has been for naught...he is barely speaking and barely eating purees with a bit more texture...so much for future planning.
Over the first year and a half of his life, when Bradley was put to bed nine times out of ten, he went to sleep on his own. We were certain that we were being given a special gift because of all of his medical issues. One thing was easy and that was bedtime. Even as I type this I am laughing to myself. Once Bradley had the G-Tube, well the sleeping issue went south fast. At first, he was on the tube for so long we couldn't put him down until he was asleep, otherwise he stood up in his crib and that threatened to pull his button out. With a lot of work and patience, we now have him feeding from 10 pm until 5 am...we wanted him to forget that he is on a tube...and every time he gets completely wrapped up in the tubing - well, we always hope he is too sleepy to understand what has happened to him. So we got him down to seven hours at night to feed, we figured out how to reduce the amount of neck wrapping incidents, and even managed to get him in the right bedtime clothes to help with all of the above. I'm not sure that I was feeling smug...I don't usually do that. But I must have been feeling comfortable. I thought that I had everything under control, I thought that I had all the files filed properly, the authorizations in chronological order, all the claims accounted for. Only there are so many times that life itself likes to attack me when I'm not looking. Eric had some medical issues that left us reeling in anxiety and fear as we waited for time to pass and tests to happen and results to be given that carried good news (Thank God) - but somewhere in there, I missed my dates and a phone call...and one Friday night I trotted down the hall to set Bradley up for the night and realized...I had no more feeding bags for him. The floor literally fell out of my world. As I panicked and tried very hard to breathe, Eric had to talk me down from the side of the Empire State Building. I did the only thing I could do, I cried...really hard for like five minutes. Eric calmed me down, cause he always does...and then I went into survival mode. I called Walgreen's to make sure that a pharmacist would work on getting us a case of feeding bags the next day. Then I prepared 16 oz of Pediasure and was ready to get up all through the night to feed him every time he woke up. I was ready for my penance and willing to send back my nomination for Mother of the Year award.
And after months and months - almost a year of not sleeping through the night for him or his parents...Bradley slept for twelve hours straight! I woke up late and went immediately to check on him since I hadn't heard him all night. He woke up and smiled at me...clearly we had all needed the rest. The triumph was short lived though, he wouldn't eat much that whole day Saturday...we finally went to what I think might be his favorite restaurant for Mexican food on Saturday night. He ate through half of my plate; and that's when I felt like celebrating!
So sleep is iffy at best in our house. This week Sydney is vying with her brother to see who can be up the most and for the longest...She has a sinus infection and a cough...so she's up somewhere around 1 am coughing and 4 am with those crazy sinus infection dreams. Meanwhile, Bradley likes to see full dark and at 5 am when we take him off his pump, he's decided that that's the perfect time to start the day. Tonight I get full watch as Dad has a migraine...so since I just hooked him up for the night...I am too am turning in. Good night folks, may your dreams be sweet and your sleep be swift! And always, sleep fast - you never know how long you're going to get! ;-)
Friday, October 26, 2012
Day 26 - Down Syndrome Awareness: 31 for 21 Challenge!
Day 26 - Laughter IS the Best Medicine!
This was my update on Facebook yesterday:
This is what happens when I go to Physical Therapy:
Madison: <Burp>
Dad: "Geesh, Madison. Didn't hold that in did you? You're a lady you need to try harder to keep that in."
Sydney, immediately: "She holds it in it'll become a fart."
Dad later to me, "Thank God I wasn't drinking anything."
So this brought to mind another set of memorable exchanges from our youngest daughter that went along the lines like this...
We moved to Japan in October 2006, just in time for Halloween, and then Thanksgiving in the Navy Lodge, only moving into a house in town two days before Christmas. It was the fastest house we've ever put together. Amazing but not funny...that happened in May, after we made the move to our house on Base and my mom came to Japan to visit. Only a few months shy of three years old, Sydney was becoming quite the comedienne. With giving her sister a hard time at the top of her list of things to do each day, she was getting pretty good at that too. So one day, Madison got very upset because she couldn't find her favorite toy...so of course, we expended a great deal of time looking for the toy. Finally, someone thought to ask Sydney if she knew where the toy was, to which she said, "No" she didn't have it. A few minutes later she walked towards the hallway and as she passed grandma she could be heard saying: "Now, where did I put that toy?"
Toy found...now skip ahead a year or so and we bought dad a new toy, a Blue Ray player. After a few weeks we came up missing a remote. We looked for that thing for almost two weeks, I tore the house a part looking for it - I knew it had to be there somewhere, and I checked everywhere including all the toy boxes and play areas. Really frustrated, I was at a loss and without much thought I jokingly asked Sydney, "Have you seen the remote for the Blue ray player?" She looked at me, then kind of shrugged and walked off. Meanwhile, I keep looking... about a minute later, Sydney walks out and says: "Here you go!" hands me the remote and trots off again, free to go cause her Mom is speechless, thinking "Oh My God! I'm raising a Kleptomaniac?" After I was sure she wouldn't see me chuckling,
I called her in and asked her to show me where it she got it from, she took me to her room and opened the top drawer of her nightstand...the one drawer I didn't look in. "Ahhhh!!!"
Dad and I gave her a stern talking to and felt that we got through to her and she wouldn't be walking off with things anymore. Yeah, not so much!
I used to walk the girls to school every morning and I wouldn't take my wallet, I would simply put my ID in my back pocket because you are supposed to have your ID with you at all times. So sometimes my ID would be on the counter top or the kitchen drawer when it was in transition between pocket and wallet. One day, it wasn't where I left it. So I started searching and looking and going through every place I ever kept the ID. Then I called a halt to our frantic search and while I called for Sydney to come to the kitchen, Eric came in from his search area. I asked her if she HAD my ID. She didn't say a word, she disappeared down the hall, walked back in and handed it to me. "Geesh Sydney, where did you put it?"
She just grinned, "In my bathrobe pocket."
We didn't reprimand her then, too busy laughing...so we took the time to step back and stop laughing...I posted it on Facebook because there for awhile, Sydney had quite a few fans that were tuning in daily to see what she was up too. Then we had the big talk, and I guess it worked - she hasn't walked off with anything since, or maybe she's choosing things that we won't notice for awhile and by the time we do she can; with complete honesty, say that she has no idea.
She has always kept us laughing. Her mind is quick and she is brilliant which means that we are not only in big trouble because our eight year old is already smarter than us; it also means that she's going to keep us laughing...and she's gonna keep her fans laughing as well!
This was my update on Facebook yesterday:
This is what happens when I go to Physical Therapy:
Madison: <Burp>
Dad: "Geesh, Madison. Didn't hold that in did you? You're a lady you need to try harder to keep that in."
Sydney, immediately: "She holds it in it'll become a fart."
Dad later to me, "Thank God I wasn't drinking anything."
So this brought to mind another set of memorable exchanges from our youngest daughter that went along the lines like this...
We moved to Japan in October 2006, just in time for Halloween, and then Thanksgiving in the Navy Lodge, only moving into a house in town two days before Christmas. It was the fastest house we've ever put together. Amazing but not funny...that happened in May, after we made the move to our house on Base and my mom came to Japan to visit. Only a few months shy of three years old, Sydney was becoming quite the comedienne. With giving her sister a hard time at the top of her list of things to do each day, she was getting pretty good at that too. So one day, Madison got very upset because she couldn't find her favorite toy...so of course, we expended a great deal of time looking for the toy. Finally, someone thought to ask Sydney if she knew where the toy was, to which she said, "No" she didn't have it. A few minutes later she walked towards the hallway and as she passed grandma she could be heard saying: "Now, where did I put that toy?"
Toy found...now skip ahead a year or so and we bought dad a new toy, a Blue Ray player. After a few weeks we came up missing a remote. We looked for that thing for almost two weeks, I tore the house a part looking for it - I knew it had to be there somewhere, and I checked everywhere including all the toy boxes and play areas. Really frustrated, I was at a loss and without much thought I jokingly asked Sydney, "Have you seen the remote for the Blue ray player?" She looked at me, then kind of shrugged and walked off. Meanwhile, I keep looking... about a minute later, Sydney walks out and says: "Here you go!" hands me the remote and trots off again, free to go cause her Mom is speechless, thinking "Oh My God! I'm raising a Kleptomaniac?" After I was sure she wouldn't see me chuckling,
I called her in and asked her to show me where it she got it from, she took me to her room and opened the top drawer of her nightstand...the one drawer I didn't look in. "Ahhhh!!!"
Dad and I gave her a stern talking to and felt that we got through to her and she wouldn't be walking off with things anymore. Yeah, not so much!
I used to walk the girls to school every morning and I wouldn't take my wallet, I would simply put my ID in my back pocket because you are supposed to have your ID with you at all times. So sometimes my ID would be on the counter top or the kitchen drawer when it was in transition between pocket and wallet. One day, it wasn't where I left it. So I started searching and looking and going through every place I ever kept the ID. Then I called a halt to our frantic search and while I called for Sydney to come to the kitchen, Eric came in from his search area. I asked her if she HAD my ID. She didn't say a word, she disappeared down the hall, walked back in and handed it to me. "Geesh Sydney, where did you put it?"
She just grinned, "In my bathrobe pocket."
We didn't reprimand her then, too busy laughing...so we took the time to step back and stop laughing...I posted it on Facebook because there for awhile, Sydney had quite a few fans that were tuning in daily to see what she was up too. Then we had the big talk, and I guess it worked - she hasn't walked off with anything since, or maybe she's choosing things that we won't notice for awhile and by the time we do she can; with complete honesty, say that she has no idea.
She has always kept us laughing. Her mind is quick and she is brilliant which means that we are not only in big trouble because our eight year old is already smarter than us; it also means that she's going to keep us laughing...and she's gonna keep her fans laughing as well!
Thursday, October 25, 2012
Day 25 - Keeping up the Awareness Together
Day 25 - Reaching Out
I was thinking about a blog topic today, well in between rushing from Point A to Point B, I 've thought about it. Sitting here tonight watching TV while Bradley is working on falling asleep I was thinking about who I want to make aware about Down syndrome. I thought it was important that all kinds of new people learned about Down syndrome and leaned about Bradley - who he is, what he does, how he's not that different than everyone else. Sure he has an extra chromosome, but just because he's special doesn't mean that we all aren't pretty great too. I mean it's like winning a cosmic lottery right! I mean winning the lottery is winning the lottery after all - it's pretty cool really.
So now I'm thinking that maybe awareness just needs to be right here, with the ones that know and love him and stop through to check in on his progress, his crazy sisters and the parents that they drag along behind them on their adventures. And as much as I want the world to back off a bit and not destroy every Trisomy 21 embryo they find with all this new genetic testing, and I want the world to stop using the R-word so as not to destroy the joy of life for each developmentally disabled person - doing this Challenge has left me feeling that my voice is so much smaller than I ever thought possible. I haven't a loud voice, but it's strong. And there are times that it will reach, even the back of the room. Sisters of my heart have heard my voice and they have responded in kindness and love and shared the story of Bradley and they've chosen to spread awareness about him and Down syndrome. When they've reached out to us this month, in person or over Facebook, it's touched me to my soul. I mean my heart feels the warmth and the love but my soul; the very essence of my core feels the joy of being connected to people that truly love my son. Will his circle grow, I think it might.
I've been working on getting the "Thank You" cards for the Buddy Walk. It was important to get the perfect picture to remind our Team why they came out to walk, why they donated, why they supported. New faces came and fell in love with our son. New people donated and it is imperative that I introduce them to my son and how great he is, how beautiful. His is a journey that needs to be taken, his is a road we have to take him down. His is a story that can be shared and his is a life that can enrich all others, his is a life worth living. We feel pretty good about that. So maybe it's the quiet voice that speaks with love and tells the story of one special little boy that will make the most difference. My voice will trigger yours, and because you love my son, your voice will speak out to teach and to defend, and others will start to listen and then start to hear. One step will lead into another and we will find others willing to walk it with us...
Six days left in this Challenge...six more days to get the word out that it's okay to have a child with Down syndrome. Six days to get the word out that life is not meant to be easy, it's meant to be lived. six days to get the word out that our life is okay, better even. Stress is a dish best served floating in laughter and seasoned with love - keeps the heart burn down; and maybe that's what we've had the most in our house but we're still doing pretty great. I guess it's just important that people know this, that the fear of having a child in the house with Down syndrome won't be such a consuming fear; that life with Bradley is made difficult by his medical issues, the rest just fits into the day. As a parent you always do the best you can to create the best life you can for your kids, doesn't matter how many chromosomes they have.
I was thinking about a blog topic today, well in between rushing from Point A to Point B, I 've thought about it. Sitting here tonight watching TV while Bradley is working on falling asleep I was thinking about who I want to make aware about Down syndrome. I thought it was important that all kinds of new people learned about Down syndrome and leaned about Bradley - who he is, what he does, how he's not that different than everyone else. Sure he has an extra chromosome, but just because he's special doesn't mean that we all aren't pretty great too. I mean it's like winning a cosmic lottery right! I mean winning the lottery is winning the lottery after all - it's pretty cool really.
So now I'm thinking that maybe awareness just needs to be right here, with the ones that know and love him and stop through to check in on his progress, his crazy sisters and the parents that they drag along behind them on their adventures. And as much as I want the world to back off a bit and not destroy every Trisomy 21 embryo they find with all this new genetic testing, and I want the world to stop using the R-word so as not to destroy the joy of life for each developmentally disabled person - doing this Challenge has left me feeling that my voice is so much smaller than I ever thought possible. I haven't a loud voice, but it's strong. And there are times that it will reach, even the back of the room. Sisters of my heart have heard my voice and they have responded in kindness and love and shared the story of Bradley and they've chosen to spread awareness about him and Down syndrome. When they've reached out to us this month, in person or over Facebook, it's touched me to my soul. I mean my heart feels the warmth and the love but my soul; the very essence of my core feels the joy of being connected to people that truly love my son. Will his circle grow, I think it might.
I've been working on getting the "Thank You" cards for the Buddy Walk. It was important to get the perfect picture to remind our Team why they came out to walk, why they donated, why they supported. New faces came and fell in love with our son. New people donated and it is imperative that I introduce them to my son and how great he is, how beautiful. His is a journey that needs to be taken, his is a road we have to take him down. His is a story that can be shared and his is a life that can enrich all others, his is a life worth living. We feel pretty good about that. So maybe it's the quiet voice that speaks with love and tells the story of one special little boy that will make the most difference. My voice will trigger yours, and because you love my son, your voice will speak out to teach and to defend, and others will start to listen and then start to hear. One step will lead into another and we will find others willing to walk it with us...
Six days left in this Challenge...six more days to get the word out that it's okay to have a child with Down syndrome. Six days to get the word out that life is not meant to be easy, it's meant to be lived. six days to get the word out that our life is okay, better even. Stress is a dish best served floating in laughter and seasoned with love - keeps the heart burn down; and maybe that's what we've had the most in our house but we're still doing pretty great. I guess it's just important that people know this, that the fear of having a child in the house with Down syndrome won't be such a consuming fear; that life with Bradley is made difficult by his medical issues, the rest just fits into the day. As a parent you always do the best you can to create the best life you can for your kids, doesn't matter how many chromosomes they have.
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