This is it folks....the final day of the "31 For 21 Challenge!"
I love that it ends on Halloween night, the night you can be anything in the world you want to be, where the weirdest, most creative costumes are considered the best. I like the potential that is allowed. A person that is otherwise stared at, ridiculed...they can be whomever they wish to be, if just for a night. And yet, I hate that tomorrow it all goes back to the judgement and the ridicule. But remember I am the Mom of a little boy with the extra chromosome, the one that makes him look slightly different from other little boys...the one that makes him learn a little slower, talk much later, if ever...that one. My little boy that valiantly tackled stairs and crowds, because he really wanted to knock on doors, because that is what he loves to do more than anything. He was the one trying to keep up with four really excited little girls and doing a pretty good job of it. Often we were the last ones up and the last ones down...those stairs can be daunting, and the crowds are best left to ebb forward without us, leaving us to move through a little more solo...but on our way out, he was the one that I turned to a candy giver and when I said to him, say thank you...he signed thank you. Other than the four little girls we had with us...not sure a whole lot were saying thank you.
I learn something every October. In my quest to bring Awareness to the World about Down syndrome, I am also trying to bring Acceptance. It's never enough. As I try to move my son through the trials of his life, I realize that there is a greater world out there that I don't know if we can conquer. I see the research being done about Down syndrome and how it benefits everyone, and then I see the articles and oped pieces of those wishing to eradicate Down syndrome. And that makes things that are tough a little tougher...someone who thinks that my son is not worth the breath he breathes, that he should have been aborted, that some parents so bitterly regret having their children with Down syndrome. What a bitter pill to swallow as Bradley's mom. Knowing that had Fate not given him to us, that he might not be here now. Sometimes I shudder to think what his life might have been with one of those parents that regret. Would they have taken care of him, would his health gotten the worst of him? Would he have been like one of those children in the Russian orphanages that get sent to adult asylums at five years old because no one wants them? Would he have lived through the early years that were so difficult? On my worst day, on his worst day, I want him and am grateful he's mine. The worse the stories, the worse the opinions of people like Richard Dawkins...the more I instinctively want to pull Bradley even closer to me.
I am trying to share Bradley with the world now, in an attempt that he will grow up before your eyes so that you will be familiar with him. So often there are a lot of changes in appearance, and I think there is value in seeing those changes so that there isn't surprise or fear. I do this knowing that someone could attack my son's image, a hacker could steal it and use it in a negative way...and yet I still put him out there. I think a lot about the book that Gene Stallings wrote about his son and how he and his wife dressed their son as cute as possible so that he would be engaging to people, so they would be drawn to him and not away from him. Although I would never be accused of putting much concern into appearances (I forget to wear make-up pretty much everyday), I see how making sure that Bradley puts his best foot forward so that he ropes you in with his adorableness (yeah, I know, not a word), so you can't resist him. I don't like the word manipulation, I am trying to indoctrinate you into the world of all things Bradley. ;-) I like to share how his life is with his sisters, how they are just everyday sweet girls that live a full life, perhaps even fuller because of their brother. I want to let the world know that having a child with Down syndrome is okay, even better than okay. The hand may not be what you expected, but life is life, you play the hand you are dealt the best way you know how.
This time around I was given a Golden moment, a chance to do what I said I would do, I kept a promise to myself. I was venting Bradley and changing his diaper in the Ladies room at Balboa. I had him strapped back in his stroller and was cleaning out his tube and syringe. When I turned around, an older woman, gently on the other side of seventy, came up to the sink in my place and asked if the little boy was mine, I smiled at her and said yes. She asked how old, I told her four. She nodded and said hers was 56. That she never regretted a day, how he was the best thing to happen to her. She started to turn away but I stopped her and said: "Thank you. Because you kept him home and loved him, you paved the way for us. Bradley has such a better life because of you and your family." She smiled at me, tentative and a little sad, "Not everyone sees them as a Blessing."
I nodded, "No ma'am they don't."
"It is truly their loss."
"Yes ma'am, it truly is." This opened the door for another woman to stop and tell me that her husband taught adult Sunday School and he would always tell her that his students with Down syndrome always taught him more than he ever thought them. What a lovely thing to add. After that, we stepped out and I met her son, then we were separated by the crowd at the pharmacy, lucky them they were done and I was just getting started....kind of poetic irony that...we're just getting started with Bradley's life too.
It felt right to me, to have that chance to say thank you. There is such a chasm between the parents of adults with Down syndrome and my age and my Bradley...sometimes, we don't know what to say to each other. Today we are lucky, we have so much outside help, they had to go it alone and their fights were so much different. Please don't think the fights today are easy, they are just as difficult and the stakes are just as high. But so much is easier. There is still a lot of social stigma related to Down syndrome, but I do believe that more people are trying, it's just that the ones that are the loudest are the ones that are trying to end people like Bradley. There is still a great deal of work to be done.
Acceptance and Awareness. Basic human desires, they feel like needs; but honestly, I think they are just a wish that when granted makes everyone feel better. Every person wants a place that feels like they belong and at least somewhere where they feel like they are wanted. You, definitely me, my girls, my son. Extra Chromosome or the usual count, the Need, the Desire to fulfill these Needs is one of my biggest goals as their mom.
Thank you for joining me on this month long journey. Bradley is a pretty awesome little boy with two amazing sisters that are helping to make this family pretty great. We have an extra something special in our house, and we know we're Blessed by its presence and especially the little boy that brought it with him.
Happy Halloween All! Happy Friday and Happy Day 31! Be well and Be Blessed!
Friday, October 31, 2014
Thursday, October 30, 2014
Day 30: It's a Bradley update!
New Tubes...Healthier Ears!
I would promise not to rant, but I just might. It was one of those really frustrating days, but there was also a lot of good stuff along the way too. So, I guess you can call it a mixed bag kind of day.
We started today so early the sun was not up and was thinking of staying in bed I think. We got ready to go and I gave Bradley his medicine. With his reflux and the seizures they always tell me it's important to get those meds in him. When we met the pre-op anesthesiologist last week, she said give it, I said okay, here's how I have to do that: in applesauce so that the Prevacid doesn't just sit in his stomach and so that it can get through the tube, I was told no problem.
I was told wrong. 1 hour and 45 minutes later, they decided to postpone his surgery because of the 5ml of applesauce. Eric and I just looked at each other dumbfounded. They wanted us to wait an hour, but they didn't want to give him the Versed to chill him out...even after we told them it took a good half hour before the Versed kicks in for him. So we were to wait for an 'hour" which is hospital speak for two, and THEN he would get Versed and then after it kicked in he would be taken back. We just shook our heads, gave Bradley his IPad and watched the Holding room empty and then fill again.
As we sat and watched, we were jolted into a reality we never thought we would experience at this hospital. With all my kids, I have always been so happy to have their care at a military hospital. I think that sometimes the Children's Hospitals have a tendency to get a little jaded, sometimes they forget how scary things can be because they are dealing with scared kids everyday. There has always been something special, something extra that our babies get from the military hospital that they don't get anywhere else.
When the girls had their Adenoids and Tonsils removed, they were taken such good care of, we were so relieved. When Bradley had his Fundoplication and was in the PICU for ten days, half of them sedated, at one point his nurse had his morphine in his shirt pocket ready to administer at the first sign of trouble as we were trying to nurse his last remaining IV site until he could wake up and not need it anymore. There's just something about military hospitals - not ERs, make no connection there; but, the hospital, and the OR where being used to so many adults, when a child passes through (for the most part) they are just really taken care of in a better way. We all have our stories, we all have our moments where that is not true, but in comparison to some of the care we have had at Children's...well, we'll keep Balboa. 
So there we were in our comfort area. We'd spoken to Bradley's ENT, he just smiled at me, told me it wasn't our fault, don't apologize to him, he would take care of Bradley, it would be all right. We had the same nurse that we've been Blessed to have through the rest of Bradley's procedures, and through both our girls. Nurse Jeri has been with our most precious miracles during the hardest times and always bring them through it well, no matter which surgeon has them. So, we felt pretty calm. And then a Lt. Commander rocked our world. Bradley's bed was the last bed in the line, the side of his bed literally parallel to the work desk, the space equivalent of almost two trashcans, I say almost because the staff had to move it every time they wanted to walk by. So we were close, really close. Talking to herself, not to us, we never thought or accused her of talking to us, she stops shuffling papers and says about a record she is holding, "I'm holding the record. I am such a Tard." Then before we could overcome the shock to formulate an appropriate response that wouldn't include yelling or tears (I sometimes get so angry I cry, it's mortifying), she was gone upstairs to go pump milk for her child. Here's the thing. I don't want you to say the word because the word is a horrible word and one that someday, someone, is going to say to my son. It's a cruel world and I wish I could say it might never happen, but I can't. The reality is that people don't think and people can be cruel. People think that the worst thing to be would be developmentally disabled, and so what better insult? If you're in your private world or space, I'm not going to say anything, probably look at you with pain that you've disappointed me, but it's not my place to be your mom or your judge. Come at my kid and I will take you out! Please understand the difference. But when you use the term in a professional arena, someone is going to hear from me. And when you use it somewhere where my son is supposed to be safe, and cared for, and you are one of the care givers, standby. She took a place where he is supposed to be focused on and cared for: physically and mentally, and she broke it. I told Bradley's ENT, that had she been an OR nurse taking care of him today, I would have pulled him out and taken him home, or she would have left the OR. But she would not get the chance to care for my son.
Anyway, the Doc got a name for us, and when he came back with it, he let us know her name, he also let us know that he'd been gone a bit because he'd been talking to her. He says she was mortified and apparently a mess...she wanted to come talk to us but he told her to get control of herself first. He told us she is a good Nurse, spot on, good care...but he also said she was not aware that it was not ever the right thing to say especially when Bradley, and his parents are sitting right next to her. I don't know if her World view changed today, or if she takes the shot to the ego for getting caught, shrugs it off and goes on with her day...I don't know. I know what I want to believe...but I am naive most days. I try to stay Bright side because Negativity feeds on my soul until there isn't much left, but there wasn't a lot of positive in this. It left me sad, and it left me with this burden of wondering when/if someone was going to say it to Bradley with me around, without me, how would he take it when he is old enough to understand it? Worrying about just getting through today, this surgery...there was no place or need to be worrying about tomorrow like that.
While we were discussing and discussing with Bradley's doc, we were busy doing two things: we connected with him on a more personal level than we had before, and we solidified his view and his nonacceptance of that kind of offensive terminology. In the back, Bradley was stubbornly holding onto the blood we needed him to give so that they can test him for Celiac Disease. Getting his blood might have taken longer than the actual surgery. It only took four people to hold him down to gas him, shocking every last one of them. We tried to tell them, but we just kept being told how one guy has four kids and one has a three and a half year old....so.... I stopped talking and just laughed at the description of how they had to fight to get him on the table and then to sleep. Then I want to weep seeing the countless sticks he was given trying to find the right vein to give up the blood. Poor Baby!
Finally, we saw him again. He slept forever, but finally woke up enough to head to Recovery! Needless to say, he was ready to go home as soon as he took one more little nap, ate and drank and gave a diaper to the cause. Once he was fully awake, he ate four graham crackers, pudding, peaches and drank his water. Then as soon as he could go home, we took off! As we walked out of his room the Volunteer from the YMCA was there, she offered him a teddy bear or stuffed horse. As she showed him I asked him in sign language, which one he wanted...he said "Horse" with an attempt at the sign and the word: it was beautiful! He carried that horse all through the hospital, out into the courtyard and then dropped it to chase his shadow and trip over his unbalanced feet - that's when he went back in the stroller for the remainder of our adventure. He doesn't like the ear drops he has to use, doesn't care for the feeling of pain that comes as his medicine wear off, and despite our warnings they still used tape on his eyes so that he looks rough tonight and will look like he lost a fight with Rocky tomorrow...but, but....he is asleep in his bed and snoring the light snore of a very tired little guy sleeping pretty darn good.
Pretty sure his mom will be doing the exact same thing very, very soon! Bradley did good, and he didn't understand any of the negative stuff...so it worked out as good for him as a day of surgery can. We enlightened at least one person...maybe that Nurse too. But I heard from a few friends on Facebook who let me know of situations where they were taking the chance to connect others with Down syndrome, and other friends voicing their support...and that felt very good. We were shocked by the blow, it came at the most surprising place...but we're still standing. Still standing!
Wednesday, October 29, 2014
Was This Wednesday or Monday
Day 29: No, it's not easy.
Apparently, the nice Monday we had was just a precursor to a terrible Wednesday. My Royals chose tonight of all nights to forget how to hit the ball. Why on earth does that have to happen in the Seventh Game of the World Series? Grr!! But still, a really great year, and with no Play-Offs since 85, I'll take it.
We spent the morning at the Park, a beautiful morning, Bradley's favorite park...and by the time we left he was finally willing to cross the bouncy bridge but still refused to try any of the slides. Not sure when this happened, but somewhere in the last few months my kiddo has determined that slides are evil and should be avoided at all costs...oh wait, they are kind of really fun, but they should only be braved when wrapped securely around a parent or a sister. The more awkward the descent the better and definitely cause for great celebration. (I may never walk straight again!)
Somewhere in the middle of our time there, a ton of kids showed up. Most were toddlers that came with some stroller class with their moms. All these adorable little year old kids, all of them walking, most of them talking. The ones that weren't talking just kept eye-balling me. You know that look, they hide behind a pole and then peek around at you. Like an Idiot, I say "Boo!" Thinking we're playing some game...wrong...the kid just stared at me like I had two heads or something. At that moment I was wishing I did, that way I had someone to say "Boo!" back at me. Anyway, glared at judging me girl and went off to find Bradley, he'll say Boo to me.
So I watched him walk back and forth and back and forth and back again. At one point he was sitting next to another little boy named Max. They sat side by side for a little while then Max was up and gone and Bradley was left behind again. None of the other kids were interested in stopping near him, most don't slow down to see him. And it was hard to watch in some ways. All those kids talking, while I am trying to get his attention for him to see my hands. All those kids stopping to talk to me, or to eyeball me as judgy girl did; but he doesn't want to interact with them or say Hi to their Moms, or Dads. He's off in his own world and sometimes I'm not even sure I'm invited into it.
Days where I watch him get left behind, remind me of how he is different from other kids. How different our family is from others. Most days I don't see what we might be missing...some days I get a glimpse of what it would be like if he were better on his feet and more verbal. And though that would be awesome, it's just not the world we were given. Right now our world is frustration as we work to control pain and improve sign understanding and delivery. Hopefully, tomorrow we get better control of the pain and maybe some of his frustration will ease because he won't be trying to sign through the pain, or understand me while he's in pain.
I'm trying not to put too much pressure on this surgery. I know the potentials behind these tubes, but I don't know if they can return the smiles I used to get all the time. But if we can fix the ears and he stays cranky, then I know we can change his Anti-seizure medication because it is causing the bulk of the problems. Right now we just don't know.
So for an Inclusion day, today was a bust. Awareness...yeah I suppose, he was in the midst of a bunch of kids and moms. Acceptance? Well, that's always the hardest one now isn't it? Don't know that he was or wasn't accepted. With little bitty kids, they are more interested in where the next slide or mud pie is coming in to play; no one ran from him or to him, considering the ages that's the norm. I'm not sure I was Accepted. I wasn't in their little class, I wasn't a new mom...so I didn't have a place in that playground dynamic either. Mostly, it just felt like another day chugging along up the side of the Wheel of Fortune, wondering if there is any possible way we might be pulling out of the mud on the bottom and reaching up towards the top and a period of joy, peace and prosperity.
That would just be a really nice change.
Night All!
Apparently, the nice Monday we had was just a precursor to a terrible Wednesday. My Royals chose tonight of all nights to forget how to hit the ball. Why on earth does that have to happen in the Seventh Game of the World Series? Grr!! But still, a really great year, and with no Play-Offs since 85, I'll take it.
We spent the morning at the Park, a beautiful morning, Bradley's favorite park...and by the time we left he was finally willing to cross the bouncy bridge but still refused to try any of the slides. Not sure when this happened, but somewhere in the last few months my kiddo has determined that slides are evil and should be avoided at all costs...oh wait, they are kind of really fun, but they should only be braved when wrapped securely around a parent or a sister. The more awkward the descent the better and definitely cause for great celebration. (I may never walk straight again!)
Somewhere in the middle of our time there, a ton of kids showed up. Most were toddlers that came with some stroller class with their moms. All these adorable little year old kids, all of them walking, most of them talking. The ones that weren't talking just kept eye-balling me. You know that look, they hide behind a pole and then peek around at you. Like an Idiot, I say "Boo!" Thinking we're playing some game...wrong...the kid just stared at me like I had two heads or something. At that moment I was wishing I did, that way I had someone to say "Boo!" back at me. Anyway, glared at judging me girl and went off to find Bradley, he'll say Boo to me.
So I watched him walk back and forth and back and forth and back again. At one point he was sitting next to another little boy named Max. They sat side by side for a little while then Max was up and gone and Bradley was left behind again. None of the other kids were interested in stopping near him, most don't slow down to see him. And it was hard to watch in some ways. All those kids talking, while I am trying to get his attention for him to see my hands. All those kids stopping to talk to me, or to eyeball me as judgy girl did; but he doesn't want to interact with them or say Hi to their Moms, or Dads. He's off in his own world and sometimes I'm not even sure I'm invited into it.
Days where I watch him get left behind, remind me of how he is different from other kids. How different our family is from others. Most days I don't see what we might be missing...some days I get a glimpse of what it would be like if he were better on his feet and more verbal. And though that would be awesome, it's just not the world we were given. Right now our world is frustration as we work to control pain and improve sign understanding and delivery. Hopefully, tomorrow we get better control of the pain and maybe some of his frustration will ease because he won't be trying to sign through the pain, or understand me while he's in pain.
I'm trying not to put too much pressure on this surgery. I know the potentials behind these tubes, but I don't know if they can return the smiles I used to get all the time. But if we can fix the ears and he stays cranky, then I know we can change his Anti-seizure medication because it is causing the bulk of the problems. Right now we just don't know.
So for an Inclusion day, today was a bust. Awareness...yeah I suppose, he was in the midst of a bunch of kids and moms. Acceptance? Well, that's always the hardest one now isn't it? Don't know that he was or wasn't accepted. With little bitty kids, they are more interested in where the next slide or mud pie is coming in to play; no one ran from him or to him, considering the ages that's the norm. I'm not sure I was Accepted. I wasn't in their little class, I wasn't a new mom...so I didn't have a place in that playground dynamic either. Mostly, it just felt like another day chugging along up the side of the Wheel of Fortune, wondering if there is any possible way we might be pulling out of the mud on the bottom and reaching up towards the top and a period of joy, peace and prosperity.
That would just be a really nice change.
Night All!
Tuesday, October 28, 2014
Waiting, Again
Coming in on Day 28 of the "31 For 21: Blogging Challenge."
We're coming to the end of October, and I can't believe that we are about to put another one in the books. A month that started with so much potential is going to slide into the realm of "not quite yet." We're getting kind of tired of "not quite yet."
October was supposed to be a second attempt at a new job for Dad, but that has been delayed again. Every potential has been found to be pushed back again and again. Bradley was supposed to go to school, but now there are limitations. Bradley's pediatrician was giving the go ahead and the big push to start Bradley in the classroom one day a week when the kids come back from Fall Break. But now we need to wait. And it's not the Mom or the school putting the breaks on, it's the pediatrician.
When we knew we couldn't delay any further on having Bradley's ears taken care of, we agreed to let his pediatrician take a look at his ears and weigh in. He was in line with the others because Bradley isn't in any position to wait for a long period of time to get his ears taken care of. On this, we are all in agreement. The funny thing is this...I thought I was the one holding back on letting Bradley face the germ ridden school. I let him venture in to capture the end of the day germs, and when his teacher suggested we start him the week we come back from break for one day, that seemed like the way to go; after all, his Pediatrician only gave him a letter for a month before starting in at an actual classroom setting. So as an FYI for his doc, I mention this to him. He sits there and nods and looks at me and goes: "We'll see."
I just kind of cocked my head, and said, "Okay." And he said it again and I just nodded. I'm not mad, I'm not worried about the delays for Bradley. I know that in part his issues right now might have those end of the day germs as contributors...we knew this could happen. I also know that by fixing his ears we are giving him a fighting chance of actually getting into the classroom, sooner than later. I know the potential he has, I see the way he works with his teachers, I see the way he sort of agrees to work with me over the last ten days without his teachers. I say sort of, because he was willing to do three puzzles in a row with me, and that is pulling teeth on a normal day.
I've watched him take an interest in playing around other kids at the Buddy Walk, and I've seen the way his play has changed with the girls. I walked in on a hug fest the other day, and it was Awesome. Sitting on Sydney's bed, Bradley was trying to throw off all her stuffed animals, but she told him "No, hug them, don't throw them." Thus began the Great Hug Fest of 2014. He hugged, then kissed every stuffed animal she owns. First him, then he gave it to Sydney to hug and kiss, then took them back, and repeat, then to Madison, then back, then to me, and back...those animals had more loving than they ever dreamed possible. The fact that he was playing with the stuffed animals was big, he normally has no place for them in his world. ;-) He crawls into his box of Little People and searches until he finds his horse, and that thing gets trotted all over the place. And then there's Murray Wiggle. That doll walks and dances and for some reason he runs around without his shirt on quite a bit! I don't want to think about why that is, but I am sure it has something to do with Bradley constantly taking off his own shirt...over and over again! He starts dropping his pants successfully and I think we will be weeks away from potty training! Of course I am waiting patiently, I am the poster child for Patience! HAHA...I know, look out for lightning!
So, anyway, back to one day at a time as we approach another surgery for Bradley. Is this a big surgery? No, not really. But he will be sedated, again. And we'll breathe easier when he's all done and awake again. I always feel better when I have him back in my arms in that uncomfortable rocking chair they always put me in. That just means he's breathing well, and his rates are good, so it's safe for me to hold him again. He's usually crying, he's usually not sure where he is, and doesn't know I'm there and holding him really...but I know he's all right. That's what I'm waiting for, I want that moment.
So...we wait. We wait for tomorrow, and get through it...then we look at Thursday and face it. We'll worry about tomorrow when it gets here, today is enough.
We're coming to the end of October, and I can't believe that we are about to put another one in the books. A month that started with so much potential is going to slide into the realm of "not quite yet." We're getting kind of tired of "not quite yet."
October was supposed to be a second attempt at a new job for Dad, but that has been delayed again. Every potential has been found to be pushed back again and again. Bradley was supposed to go to school, but now there are limitations. Bradley's pediatrician was giving the go ahead and the big push to start Bradley in the classroom one day a week when the kids come back from Fall Break. But now we need to wait. And it's not the Mom or the school putting the breaks on, it's the pediatrician.
When we knew we couldn't delay any further on having Bradley's ears taken care of, we agreed to let his pediatrician take a look at his ears and weigh in. He was in line with the others because Bradley isn't in any position to wait for a long period of time to get his ears taken care of. On this, we are all in agreement. The funny thing is this...I thought I was the one holding back on letting Bradley face the germ ridden school. I let him venture in to capture the end of the day germs, and when his teacher suggested we start him the week we come back from break for one day, that seemed like the way to go; after all, his Pediatrician only gave him a letter for a month before starting in at an actual classroom setting. So as an FYI for his doc, I mention this to him. He sits there and nods and looks at me and goes: "We'll see."
I just kind of cocked my head, and said, "Okay." And he said it again and I just nodded. I'm not mad, I'm not worried about the delays for Bradley. I know that in part his issues right now might have those end of the day germs as contributors...we knew this could happen. I also know that by fixing his ears we are giving him a fighting chance of actually getting into the classroom, sooner than later. I know the potential he has, I see the way he works with his teachers, I see the way he sort of agrees to work with me over the last ten days without his teachers. I say sort of, because he was willing to do three puzzles in a row with me, and that is pulling teeth on a normal day.
I've watched him take an interest in playing around other kids at the Buddy Walk, and I've seen the way his play has changed with the girls. I walked in on a hug fest the other day, and it was Awesome. Sitting on Sydney's bed, Bradley was trying to throw off all her stuffed animals, but she told him "No, hug them, don't throw them." Thus began the Great Hug Fest of 2014. He hugged, then kissed every stuffed animal she owns. First him, then he gave it to Sydney to hug and kiss, then took them back, and repeat, then to Madison, then back, then to me, and back...those animals had more loving than they ever dreamed possible. The fact that he was playing with the stuffed animals was big, he normally has no place for them in his world. ;-) He crawls into his box of Little People and searches until he finds his horse, and that thing gets trotted all over the place. And then there's Murray Wiggle. That doll walks and dances and for some reason he runs around without his shirt on quite a bit! I don't want to think about why that is, but I am sure it has something to do with Bradley constantly taking off his own shirt...over and over again! He starts dropping his pants successfully and I think we will be weeks away from potty training! Of course I am waiting patiently, I am the poster child for Patience! HAHA...I know, look out for lightning!
So, anyway, back to one day at a time as we approach another surgery for Bradley. Is this a big surgery? No, not really. But he will be sedated, again. And we'll breathe easier when he's all done and awake again. I always feel better when I have him back in my arms in that uncomfortable rocking chair they always put me in. That just means he's breathing well, and his rates are good, so it's safe for me to hold him again. He's usually crying, he's usually not sure where he is, and doesn't know I'm there and holding him really...but I know he's all right. That's what I'm waiting for, I want that moment.
So...we wait. We wait for tomorrow, and get through it...then we look at Thursday and face it. We'll worry about tomorrow when it gets here, today is enough.
Monday, October 27, 2014
Day 27: Aren't We Supposed to Hate Mondays?
So normally, I would say that I hate Mondays. And I am not suddenly switching to "I love Mondays," but I will concede that some are better than others, and this one was pretty good. The kids had a pretty good day!
Sydney is still out of school, week two of the two week break is underway, and I have to say, that little girl is quite willing to jump into Homeschooling if it lets her sleep til eight every morning. She IS, her mother's daughter. Her love of sleep is rivaled only by my own, I have taught her well. Anyway, today she went to see a Physical Therapist who is working with her on teaching her some relaxation techniques and some other muscle retraining techniques to encourage her body to start talking to her brain about stuff a little more and a little better. She did great, and though Eric and I were sort of looking at each other like: "Huh? Why are we here?" We saw potential value, and luckily, it worked out to be true. So as of right now, we believe that though the process will be long, we also believe that the end results will be in her favor.
To jump to Madison...today was a late start day at school. The Principal said that it was a Collaboration day for the teacher's...I think that is school-speak for having a catered breakfast and watching a fun movie with a teacher in it...though I wouldn't quote me on that, I have no true basis to go on here. I just know if I worked there, that is what I would need to motivate me to get up early on a Monday when I don't have students warming the seats in my classroom.
What this meant for us was that Madison didn't have to be to school until 10:05. Yep, that 5 makes a huge difference there and at the end of the day when they walk out of school at 3:05. Also, the school made today Family Fun Night. NO homework was assigned nor were tests scheduled. Kids were invited to unplug and get to know their families again. In the spirit of this, I made French Toast this morning to get Madison ready for her Zombie Fun Run fundraiser for school, Eric created a torn shirt that said: "Run Like a Zombie is Chasing U!"which she thought was quite cool.
After school it was off to Madison's Volleyball game. And as Bucket Lists go...Madison is ready to write a new list after this year. First she made the Volleyball team, then she has played quite a few times, and then tonight she got to start in the 2nd game. They play their last game on Thursday, then they are into the Play-Off rounds next week. We can't believe that the Season is already at an end...proof positive that time truly does fly when you're having fun!
We ended the night with "Field of Dreams" because the girls couldn't remember seeing it and Dad and I felt it too valuable a story for them not to see it. As you can imagine, they loved it and we still love it...so for us, that turned out to be the best way to spend the extra time together. Bradley? Huge fan! He watched all but the last twenty-five, thirty minutes of it before he fell asleep. So for us, it was a win!
But here's the big winner in the day. Though Bradley was not directly involved in this, it is about him, and because of him. Without effort, Madison quietly created a little Awareness and acceptance of her brother at Volleyball. Turns out, last week, the Coach encouraged the girls to open up a bit about their families. A few have asked Madison if Bradley is her brother and they have told her how adorable he is. When her Coach invited the discussion about families, Madison was more than willing to share about hers. My girl is compassionate and passionate, and though I got my information about it from Dad, as he is the one that talked to the Coach...at one point, the Coach had to gently ease the conversation away because her story had a couple of the girls with tears in their eyes. This was not a negative move on his part about her it was more a realization by her team of what Bradley has been through, and his family as a result; tough for us adults, really tough on kids. Madison does not quibble about her brother, she is a smart kid; she knows where he's been, what he's been through, and she has a greater understanding than most realize of how close we have come to being without him if we weren't willing to change everything. And if you were to ask Madison if she would do it all again to keep her brother...she would.
For Madison and Sydney, Bradley is just their brother, and he is pretty awesome to them. Accepting him is like accepting the air to breathe, loving him and wanting to share him with the world is just part of who they are. You can't teach that kind of love, you can encourage tolerance, but that kind of unconditional love comes from deep in the soul. And like to like, soul to soul reaches for each other in these three kids. Together these three kids are the best thing to ever happen to Eric and I, I couldn't be prouder of them. And honestly, I am so Blessed to have this 12 year old daughter to lead the way down a pretty uncertain path, because at the heart of it, hers is strong and full.
Happy Monday all! In our house, it was pretty great indeed!
Sydney is still out of school, week two of the two week break is underway, and I have to say, that little girl is quite willing to jump into Homeschooling if it lets her sleep til eight every morning. She IS, her mother's daughter. Her love of sleep is rivaled only by my own, I have taught her well. Anyway, today she went to see a Physical Therapist who is working with her on teaching her some relaxation techniques and some other muscle retraining techniques to encourage her body to start talking to her brain about stuff a little more and a little better. She did great, and though Eric and I were sort of looking at each other like: "Huh? Why are we here?" We saw potential value, and luckily, it worked out to be true. So as of right now, we believe that though the process will be long, we also believe that the end results will be in her favor.
To jump to Madison...today was a late start day at school. The Principal said that it was a Collaboration day for the teacher's...I think that is school-speak for having a catered breakfast and watching a fun movie with a teacher in it...though I wouldn't quote me on that, I have no true basis to go on here. I just know if I worked there, that is what I would need to motivate me to get up early on a Monday when I don't have students warming the seats in my classroom.
What this meant for us was that Madison didn't have to be to school until 10:05. Yep, that 5 makes a huge difference there and at the end of the day when they walk out of school at 3:05. Also, the school made today Family Fun Night. NO homework was assigned nor were tests scheduled. Kids were invited to unplug and get to know their families again. In the spirit of this, I made French Toast this morning to get Madison ready for her Zombie Fun Run fundraiser for school, Eric created a torn shirt that said: "Run Like a Zombie is Chasing U!"which she thought was quite cool.
After school it was off to Madison's Volleyball game. And as Bucket Lists go...Madison is ready to write a new list after this year. First she made the Volleyball team, then she has played quite a few times, and then tonight she got to start in the 2nd game. They play their last game on Thursday, then they are into the Play-Off rounds next week. We can't believe that the Season is already at an end...proof positive that time truly does fly when you're having fun!
We ended the night with "Field of Dreams" because the girls couldn't remember seeing it and Dad and I felt it too valuable a story for them not to see it. As you can imagine, they loved it and we still love it...so for us, that turned out to be the best way to spend the extra time together. Bradley? Huge fan! He watched all but the last twenty-five, thirty minutes of it before he fell asleep. So for us, it was a win!
But here's the big winner in the day. Though Bradley was not directly involved in this, it is about him, and because of him. Without effort, Madison quietly created a little Awareness and acceptance of her brother at Volleyball. Turns out, last week, the Coach encouraged the girls to open up a bit about their families. A few have asked Madison if Bradley is her brother and they have told her how adorable he is. When her Coach invited the discussion about families, Madison was more than willing to share about hers. My girl is compassionate and passionate, and though I got my information about it from Dad, as he is the one that talked to the Coach...at one point, the Coach had to gently ease the conversation away because her story had a couple of the girls with tears in their eyes. This was not a negative move on his part about her it was more a realization by her team of what Bradley has been through, and his family as a result; tough for us adults, really tough on kids. Madison does not quibble about her brother, she is a smart kid; she knows where he's been, what he's been through, and she has a greater understanding than most realize of how close we have come to being without him if we weren't willing to change everything. And if you were to ask Madison if she would do it all again to keep her brother...she would.
For Madison and Sydney, Bradley is just their brother, and he is pretty awesome to them. Accepting him is like accepting the air to breathe, loving him and wanting to share him with the world is just part of who they are. You can't teach that kind of love, you can encourage tolerance, but that kind of unconditional love comes from deep in the soul. And like to like, soul to soul reaches for each other in these three kids. Together these three kids are the best thing to ever happen to Eric and I, I couldn't be prouder of them. And honestly, I am so Blessed to have this 12 year old daughter to lead the way down a pretty uncertain path, because at the heart of it, hers is strong and full.
Happy Monday all! In our house, it was pretty great indeed!
Sunday, October 26, 2014
Have You Met Bradley?
Day 26: Happy Sunday
Have you seen my little boy? He's four years and ten months of energy, cuteness, awesome and just enough devilry to remind us that he is not really an angel. If you ever listen to country music and know the song by Alabama: "Close Enough to Perfect"? Well, that's him. He isn't easy, he's a tough kid with a medical challenges that baffle the apparent medical board that oversees his care. He's got a personality that likes to be funny, but sometimes he just wants it his way or the highway...and believe me when we clash...there is Hell to pay! He's tough. He's tough to handle sometimes, he's tough on the inside, and he can be tough to predict. When it comes down to it, it can be tough to keep him healthy, it can be tough to pull him through all the medical stuff he goes through. And it's difficult, because there are times that he is just being a tough kid to deal with because he is a little person with this really strong and stubborn personality; and then there are times when he is just a little kid with tough things going on in his body: pain, over stimulation...things like that - and he can't tell you what is going on, nor can you always tell there is something going on until it is too late. And by too late, I mean the point where the parental frustration level has reached a climax. Your kid that was just fine yesterday, this morning, an hour ago...is suddenly not fine. And by the time you have determined that he is not; in fact, just throwing a tantrum, he is in fact, not well...he is miserably frantic, you are guiltily frantic and there is no middle happy place. If you think that is bad, consider the other: he's ill, been ill, you think he's ill...but no, he's just being a little turkey butt of a four year old kid. You want to give him some leeway here, but then you realize he's just pushing you to push back and get his own way. You realize this too late and yet again he has gotten his way in a place where he should not have.
Raise him like you would your other kids. Right...just have to repeat and repeat and repeat. And then sometimes he feels so bad, the lesson has to wait and we will start over from the beginning when he does feel better because he didn't get the repetition and he forgot. No, there's no burnout here. It's super easy to find the endless supply of patience and understanding necessary to make sure that he gets all these lessons down...again and again.
Actually, No. Patience gets frayed, and the understanding grows quiet as you sit and try to regroup, trying to find the ability to get up and try again, and then again...And it can be really, really tough. But here's the way it goes in my world. There are days that knock me down, I get frustrated and I get left feeling lost. I worry and feel overwhelmed because I worry about his today, his tomorrows, they all boil over in my head. When that happens that typically makes me cry, and that inevitably makes me mad, and when I get that mad...I start researching. I read everything I can, I learn something new...I look for another way to get through the muck. Because underneath it all, I know that I love this little boy, and if there is a way I'm going to find it. It may not happen today or tomorrow, but some tomorrow it will or I will either understand why, or I will find peace with the acceptance of why not. At least this is what I try to convince myself.
But I will always fight for this little boy because the light in his eyes, the love that shines from his soul, it fills you up on the inside until it flows out of you. Every fight, every tear, every thing, just every thing...it's worth it for him.
I may want more than I can get, but we're going to keep pushing for the next step because the possibilities in tomorrow are endless. There is no giving up and there is no quitting, there is just finding a way to keep moving, backwards, forwards, sideways...always moving. No matter how tough.
Meet my son, this is my Bradley, and he brings chaos. He brings trouble and worry, and he brings joy and love. He brings everything you expect a four year old whirlwind to bring with him,,,and most things you wouldn't. He isn't a mistake, he IS. He is part of a Plan, and he bring no Regrets. Becoming his Mom was the third greatest miracle in my life, because I definitely got lucky when he chose me to be his Mom.
Have you seen my little boy? He's four years and ten months of energy, cuteness, awesome and just enough devilry to remind us that he is not really an angel. If you ever listen to country music and know the song by Alabama: "Close Enough to Perfect"? Well, that's him. He isn't easy, he's a tough kid with a medical challenges that baffle the apparent medical board that oversees his care. He's got a personality that likes to be funny, but sometimes he just wants it his way or the highway...and believe me when we clash...there is Hell to pay! He's tough. He's tough to handle sometimes, he's tough on the inside, and he can be tough to predict. When it comes down to it, it can be tough to keep him healthy, it can be tough to pull him through all the medical stuff he goes through. And it's difficult, because there are times that he is just being a tough kid to deal with because he is a little person with this really strong and stubborn personality; and then there are times when he is just a little kid with tough things going on in his body: pain, over stimulation...things like that - and he can't tell you what is going on, nor can you always tell there is something going on until it is too late. And by too late, I mean the point where the parental frustration level has reached a climax. Your kid that was just fine yesterday, this morning, an hour ago...is suddenly not fine. And by the time you have determined that he is not; in fact, just throwing a tantrum, he is in fact, not well...he is miserably frantic, you are guiltily frantic and there is no middle happy place. If you think that is bad, consider the other: he's ill, been ill, you think he's ill...but no, he's just being a little turkey butt of a four year old kid. You want to give him some leeway here, but then you realize he's just pushing you to push back and get his own way. You realize this too late and yet again he has gotten his way in a place where he should not have.
Raise him like you would your other kids. Right...just have to repeat and repeat and repeat. And then sometimes he feels so bad, the lesson has to wait and we will start over from the beginning when he does feel better because he didn't get the repetition and he forgot. No, there's no burnout here. It's super easy to find the endless supply of patience and understanding necessary to make sure that he gets all these lessons down...again and again.
Actually, No. Patience gets frayed, and the understanding grows quiet as you sit and try to regroup, trying to find the ability to get up and try again, and then again...And it can be really, really tough. But here's the way it goes in my world. There are days that knock me down, I get frustrated and I get left feeling lost. I worry and feel overwhelmed because I worry about his today, his tomorrows, they all boil over in my head. When that happens that typically makes me cry, and that inevitably makes me mad, and when I get that mad...I start researching. I read everything I can, I learn something new...I look for another way to get through the muck. Because underneath it all, I know that I love this little boy, and if there is a way I'm going to find it. It may not happen today or tomorrow, but some tomorrow it will or I will either understand why, or I will find peace with the acceptance of why not. At least this is what I try to convince myself.
But I will always fight for this little boy because the light in his eyes, the love that shines from his soul, it fills you up on the inside until it flows out of you. Every fight, every tear, every thing, just every thing...it's worth it for him.
I may want more than I can get, but we're going to keep pushing for the next step because the possibilities in tomorrow are endless. There is no giving up and there is no quitting, there is just finding a way to keep moving, backwards, forwards, sideways...always moving. No matter how tough.
Meet my son, this is my Bradley, and he brings chaos. He brings trouble and worry, and he brings joy and love. He brings everything you expect a four year old whirlwind to bring with him,,,and most things you wouldn't. He isn't a mistake, he IS. He is part of a Plan, and he bring no Regrets. Becoming his Mom was the third greatest miracle in my life, because I definitely got lucky when he chose me to be his Mom.
Saturday, October 25, 2014
Mixed Bag Saturday!
I feel like I just got posted in one of those Facebook status updates where I have to sort though the crap of my day to find the three good things about it. It's not quite that bad, it's just one of those days of odd pairings, the juxtaposing of my life to make it feel surreal.
We'll start before the sunrise, because I was overly optimistic that my son would wait and rise with the sun...turns out he was ready much earlier than that. Trade one bleary eyed morning for the little snuggler that I put back to sleep this morning. Bradley is usually a roamer, all over his bed, except this morning when he crawled into my arms to fall back to sleep. Nice!
And we had a pretty good morning, roaming around the living room, playing with toys, watched a little Sofia and some Little Einstein's but was more interested in playing today and didn't notice when mom happily hit the off button. Hurray! For the Win! We were thrilled when Dad got home from class, and he managed to convince a stubborn Bradley that a nap was in his best interest, and mine. With the little boy down, I got a shower and then a small nap while Dad motored off to bring back lunch.
When Bradley did wake up, he wanted to eat and devoured graham crackers, pudding and some cheese. All the crunchy things that helps him chew more and more and better and better, plus a return to cheese, a fave! Here's the negative; he's grinding his teeth now, all the time! Makes me want to grind my teeth...well, you get the idea. And yet, he ate great today! Despite the grinding, he ate a fruit roll-up, the Cheese Puffs, peaches, veggie straws and pudding. The old stand-bys with some new ones. And that makes a triumphant day. He wanted and asked to eat, and I was more than willing to oblige when he did. Lots and lots of crunchies, things he has to munch down on, the things that help him say words later. Here's one of our theories: we think that if he chews something first, real food, the crunchy stuff, then he can take his milk or water and do better with it. We think the problems come when he drinks more of his Pediasure or his water, then he can't get enough through to his stomach without causing a traffic jam at his Esophageal sphincter. Yes I know, a veritable list of scientific phrases, but I think at least one of them was a technical term of something happening with him; most likely 'traffic jam'.
So my Royals had a lead and blew it. My son had a great day eating and then tonight he had an episode of retching, and we think a tummy ache. Coincidence, I think not. Made my tummy hurt watching them lose too! But seriously, we come back to the same thing every time. We don't know for sure why he does what he does, and we don't know how to stop or prevent the episodes. All we have is theory and conjecture with a Hypothesis that may or may not pan out to be something real we can use in order to better take care of him. Trying to get a doctor on your side, well...that's the tough part. It's not that they don't believe us or listen to us, the ones that know us are on board and willing to consider the options. It's the new docs that are the ones that want to push back at us. After our vehement refusal to consider the night time feeds again for Bradley, his Peds GI stopped pushing us on it. She told us that as long as we see weight gain over the next three months then we don't have to try night time or all day feeds. Quite the relief. Let's face it, Normal may only be a Cycle on a Washing Machine, but try washing without it...life can get a little more difficult. Having Bradley run around with a backpack to hold his feeding machine in order to feed him thoughout the day would be a new normal, but not the one we want for him. That's not the one we're fighting for, we see a potential for him and we want to make sure we help him reach it. We canceled an appointment with the Peds GI at Rady's Children's for two reasons: 1. She never called us with test results when she said she would, and 2. Sent recommendations that we reduce oral feeds based on a test that he endured under duress. Less than impressed, we decided to stick to the doctors we know and who know Bradley the best.
So it was one of those good and bad days. Once Bradley cleared out the tummy trouble and that episode, he was willing to go to sleep. For how long is always the mystery. I know that he is wearing me down right now because Eric has been hearing him before me a little more at night lately, and that's unusual, that man can sleep through anything! :-) Still, it is always, always nice being part of a team. So for now, he's taking First Watch while he shoots stuff on his game and unwinds, while I take one for the team and snooze until Bradley lets me know he needs me. Whatever works right?
Day 25 of the Challenge is put to bed, and I with it. Only six more days to spread the word for this year's October. I think the NFL should help spread Awareness and wear Blue and yellow for one game next October. Who's with me?
Night all. Be well!
We'll start before the sunrise, because I was overly optimistic that my son would wait and rise with the sun...turns out he was ready much earlier than that. Trade one bleary eyed morning for the little snuggler that I put back to sleep this morning. Bradley is usually a roamer, all over his bed, except this morning when he crawled into my arms to fall back to sleep. Nice!
And we had a pretty good morning, roaming around the living room, playing with toys, watched a little Sofia and some Little Einstein's but was more interested in playing today and didn't notice when mom happily hit the off button. Hurray! For the Win! We were thrilled when Dad got home from class, and he managed to convince a stubborn Bradley that a nap was in his best interest, and mine. With the little boy down, I got a shower and then a small nap while Dad motored off to bring back lunch.
When Bradley did wake up, he wanted to eat and devoured graham crackers, pudding and some cheese. All the crunchy things that helps him chew more and more and better and better, plus a return to cheese, a fave! Here's the negative; he's grinding his teeth now, all the time! Makes me want to grind my teeth...well, you get the idea. And yet, he ate great today! Despite the grinding, he ate a fruit roll-up, the Cheese Puffs, peaches, veggie straws and pudding. The old stand-bys with some new ones. And that makes a triumphant day. He wanted and asked to eat, and I was more than willing to oblige when he did. Lots and lots of crunchies, things he has to munch down on, the things that help him say words later. Here's one of our theories: we think that if he chews something first, real food, the crunchy stuff, then he can take his milk or water and do better with it. We think the problems come when he drinks more of his Pediasure or his water, then he can't get enough through to his stomach without causing a traffic jam at his Esophageal sphincter. Yes I know, a veritable list of scientific phrases, but I think at least one of them was a technical term of something happening with him; most likely 'traffic jam'.
So my Royals had a lead and blew it. My son had a great day eating and then tonight he had an episode of retching, and we think a tummy ache. Coincidence, I think not. Made my tummy hurt watching them lose too! But seriously, we come back to the same thing every time. We don't know for sure why he does what he does, and we don't know how to stop or prevent the episodes. All we have is theory and conjecture with a Hypothesis that may or may not pan out to be something real we can use in order to better take care of him. Trying to get a doctor on your side, well...that's the tough part. It's not that they don't believe us or listen to us, the ones that know us are on board and willing to consider the options. It's the new docs that are the ones that want to push back at us. After our vehement refusal to consider the night time feeds again for Bradley, his Peds GI stopped pushing us on it. She told us that as long as we see weight gain over the next three months then we don't have to try night time or all day feeds. Quite the relief. Let's face it, Normal may only be a Cycle on a Washing Machine, but try washing without it...life can get a little more difficult. Having Bradley run around with a backpack to hold his feeding machine in order to feed him thoughout the day would be a new normal, but not the one we want for him. That's not the one we're fighting for, we see a potential for him and we want to make sure we help him reach it. We canceled an appointment with the Peds GI at Rady's Children's for two reasons: 1. She never called us with test results when she said she would, and 2. Sent recommendations that we reduce oral feeds based on a test that he endured under duress. Less than impressed, we decided to stick to the doctors we know and who know Bradley the best.
So it was one of those good and bad days. Once Bradley cleared out the tummy trouble and that episode, he was willing to go to sleep. For how long is always the mystery. I know that he is wearing me down right now because Eric has been hearing him before me a little more at night lately, and that's unusual, that man can sleep through anything! :-) Still, it is always, always nice being part of a team. So for now, he's taking First Watch while he shoots stuff on his game and unwinds, while I take one for the team and snooze until Bradley lets me know he needs me. Whatever works right?
Day 25 of the Challenge is put to bed, and I with it. Only six more days to spread the word for this year's October. I think the NFL should help spread Awareness and wear Blue and yellow for one game next October. Who's with me?
Night all. Be well!
Friday, October 24, 2014
Quiet Night, Peaceful Night? Please?
Day 24: Can We Get a Reset?
There are some days that you just wish you could go back to bed and try it again. With Bradley's ears fighting against us like they are, we are trying to keep him pain free...sort of doing that. Sadly, the Pharmacist looked at me and told me that his pain medicine would probably make him sleepy...I wanted to slap him. Sure enough, the pain medicine is trying to work on the pain but at the same time it winds him up like a top, but at the same time it makes him sleepy... So guess who decided that he didn't need a nap today? But guess who really needed one? Yeah, the same kid.
We had a busy day, he played blocks, and puzzles and with his Dino Popper...we watched Sofia the First a few times, some Bones because that sometimes puts him to sleep. We played peek-a-boo down the hall where he ran after me, said: Boo, then he chased me back down the hall and over and over...one of us started getting tired but it wasn't him. I mean he was tired, wayyyyy, tired...but refused to sleep. He even rode backseat shotgun to get Madison from school, and he stayed awake the whole time. Rode to McDonald's to get a drink and stall for time, then to school and waited for her...in all that time, not even a yawn! Me, yes...but we're talking about Bradley remember.
Back at home again...the ride gave him his second, no wait...third wind! Now Sydney is enlisted to play, Mom is working on dinner, trying to get it in the oven to then get Brdley in a bath, cause now we're at THAT point, you know the one where every time you turn around he's crying about something. Like, um....the shadow moved and he couldn't find his buddy anymore. Or, someone told him he couldn't climb into the mirror with himself...wow, that was way rough!
I have the potatoes ready, the chicken ready to be cut up and thrown into the oven and one of those things happens, those everything moves into slow motion as you see what is going to happen but can't stop it. I'm looking at Eric's Project for class, I hear Bradley come running down the hall towards me. I turn to him as he tries to grab the barstool, and as he misses my hands are reaching for and missing him as he falls forward and hits the edge of the counter with his forehead. With everything moving in slow motion you would think I could have caught up with him, but no....nope, he has the big bump on his forehead to prove it.
So he whacks his head and then everything starts moving in fast forward, I scoop him up and force him to let me keep ice on his head until he resorts to kicking, hitting and trying to hurt me. Forget the evening dose of pain medicine, we gave him Ibuprofen and could see it start to bring the bump down. Thank God! No nausea, no retching, no blackout...bump formed out and started easing with the little bit of ice and Ibuoprofen. Relief!!!!!
Eric gave him a bath, got him ready for bed and sat with him in the rocking chair. Finally, finally he started to settle down, until he calmed, quieted and went to sleep. Luckily, my monitor is a video monitor and I can hear him breathe. Kind of creepy when you wake up disoriented in the middle of the night, but tonight it will be comforting as I wake every couple hours with or without him. I'm hoping he'll sleep twelve hours, but I have this feeling that he and I are going to be checking the stars at one point and maybe watching the sunrise a bit later.
Since he dropped off before his night time medicine, I'll have it ready to pop into him at his first rising. We just need him to rest and rest well, and then we just have to get through five more days before we get his ears fixed....why does five days suddenly feel like fifty? Sigh!!!
Friday night or not, 8:33 at night or not...little guy is down and Momma is following along as quickly as possible. Lightweight? Yeah maybe. So.... There are worse things to be called. :-).
Good night all, happy Friday and yeah to the end of another week, we are just exhausted in this house!
There are some days that you just wish you could go back to bed and try it again. With Bradley's ears fighting against us like they are, we are trying to keep him pain free...sort of doing that. Sadly, the Pharmacist looked at me and told me that his pain medicine would probably make him sleepy...I wanted to slap him. Sure enough, the pain medicine is trying to work on the pain but at the same time it winds him up like a top, but at the same time it makes him sleepy... So guess who decided that he didn't need a nap today? But guess who really needed one? Yeah, the same kid.
We had a busy day, he played blocks, and puzzles and with his Dino Popper...we watched Sofia the First a few times, some Bones because that sometimes puts him to sleep. We played peek-a-boo down the hall where he ran after me, said: Boo, then he chased me back down the hall and over and over...one of us started getting tired but it wasn't him. I mean he was tired, wayyyyy, tired...but refused to sleep. He even rode backseat shotgun to get Madison from school, and he stayed awake the whole time. Rode to McDonald's to get a drink and stall for time, then to school and waited for her...in all that time, not even a yawn! Me, yes...but we're talking about Bradley remember.
Back at home again...the ride gave him his second, no wait...third wind! Now Sydney is enlisted to play, Mom is working on dinner, trying to get it in the oven to then get Brdley in a bath, cause now we're at THAT point, you know the one where every time you turn around he's crying about something. Like, um....the shadow moved and he couldn't find his buddy anymore. Or, someone told him he couldn't climb into the mirror with himself...wow, that was way rough!
I have the potatoes ready, the chicken ready to be cut up and thrown into the oven and one of those things happens, those everything moves into slow motion as you see what is going to happen but can't stop it. I'm looking at Eric's Project for class, I hear Bradley come running down the hall towards me. I turn to him as he tries to grab the barstool, and as he misses my hands are reaching for and missing him as he falls forward and hits the edge of the counter with his forehead. With everything moving in slow motion you would think I could have caught up with him, but no....nope, he has the big bump on his forehead to prove it.
So he whacks his head and then everything starts moving in fast forward, I scoop him up and force him to let me keep ice on his head until he resorts to kicking, hitting and trying to hurt me. Forget the evening dose of pain medicine, we gave him Ibuprofen and could see it start to bring the bump down. Thank God! No nausea, no retching, no blackout...bump formed out and started easing with the little bit of ice and Ibuoprofen. Relief!!!!!
Eric gave him a bath, got him ready for bed and sat with him in the rocking chair. Finally, finally he started to settle down, until he calmed, quieted and went to sleep. Luckily, my monitor is a video monitor and I can hear him breathe. Kind of creepy when you wake up disoriented in the middle of the night, but tonight it will be comforting as I wake every couple hours with or without him. I'm hoping he'll sleep twelve hours, but I have this feeling that he and I are going to be checking the stars at one point and maybe watching the sunrise a bit later.
Since he dropped off before his night time medicine, I'll have it ready to pop into him at his first rising. We just need him to rest and rest well, and then we just have to get through five more days before we get his ears fixed....why does five days suddenly feel like fifty? Sigh!!!
Friday night or not, 8:33 at night or not...little guy is down and Momma is following along as quickly as possible. Lightweight? Yeah maybe. So.... There are worse things to be called. :-).
Good night all, happy Friday and yeah to the end of another week, we are just exhausted in this house!
Thursday, October 23, 2014
Day 23 of the Challenge, A new Challenge for Bradley
Bradley was good tonight, he was sweet and he went to sleep without too much fuss. When I laid him down he fussed and tried to climb out of bed, so I laid him back down and then lay beside him. I like to think that this is the way we transition him back to the idea of putting himself to bed, long ago before the tube, he knew how to do this...it is long forgotten. Tonight, he wanted to be close to me. This is not an usual occurrence, most nights if we end up like this, he is on his pillow or at the foot of the bed, near but not touching. Tonight, he needed to be touching me, he needed to feel comforted.
So here's the deal with Bradley. He has had four ear infections since August of this year, two while on Antibiotics. The last one, he was was supposed to be checked at four weeks, turns out we were already scheduled to see his ENT, handy! Bradley's ears are still red and irritated, with so much debris it's really difficult to get any kind of movement from his eardrums. It's time to make a move.
We went to see his Gastro doc the morning before we saw his ENT. She took note that he seems to be refluxing a bit more so she upped his dosage of Prevacid. As his Pediatrician told me yesterday, it's a "Whopping dose." But he's been on the same dose since he was eight months old, he might be a bit used to it by now. She also told us that the reflux is most likely what is causing the ear problems; especially since, Bradley has no other symptoms. She sent a note up to ENT. So while Dad went with Sydney to get her brand new military ID, since she is ten...I went to sit in Pharmacy Hell. Haven't heard of it? Funny...It's right next to the Clowns, just past the Murderers and in the middle of the snake pit. Haven't been to Balboa? Yeah, you wouldn't know. Anyway, from there we popped into Audiology where they couldn't get a good hearing test on Bradley because he just needs two Audiologists to test him still, and well...there was the issue of the occluded ears and all.
By the time we saw the ENT, he took a look, then smiled and told us, you know the tubes when they are in, work well...we need to take him in, clean his ears out, remove the tubes that are partially out and then put new ones in. He also told us, let me know the next time Bradley is being sedated and I will make myself available and if I am just not physically here, someone I trust will be. What more can a parent ask for? Here we have this little guy with incredible behavior changes and complete misery with these ears and he not only gets it, but he also understands the need to not sedate Bradley until we can do so with as many people on board to do and get what they need at the same time.
Awesome in theory...except there's this...Bradley is in too much pain with his ears. We were dosing him in the morning and then trying to get through the afternoon to dose him close to bedtime,,,that's a lot of Motrin, plus a dose of Tylenol if necessary in the afternoon just to get him through. By Sunday, I was starting to worry that we were going to tear up his stomach and never give the new dose of Prevacid a chance to work. So I let his Case Manager know the situation and our concerns. Phone calls with her on Monday, and then trying to connect with his pediatrician's nurse on Tuesday...the phone line into Balboa is run by the same people who run the pharmacy, I swear. I mean, when you call in and sit on hold the whole time I truly believe that if you were to record their hold music and play it backward it would say something about Satan and murdering your mama! But that is pure conjecture on my part.
But I digress...I send an emailing explaining everything in great detail to his pediatrician, because he is a little out of the loop and is as worried about this Motrin issue as I am. His nurse calls and asks us to come in on Wednesday afternoon. We do, we expect twenty minutes and out...we were naive. While we were there, he got the e-mail telling everyone (like a list of fifteen docs and nurses attached to Bradley) that the ENT is taking him in on the 30th of October, also inviting any of them that would like to coordinate their procedures or tests needs to let the ENT doc know and he would make the space available. Because sometimes, you get to the hospital and someone helps you climb out of the snake pit and a lot can happen and it can happen quickly. His Pediatrician sends us to ENT, who somehow finds the space to pop him in to a quick Pre-OP appt, and then sends us up to the Surgical clinic to speak to the Anesthesiologists. Head spinning yet? Ours certainly were.
We left the hospital with a new medication to help with the pain and protect his tummy a bit until the 30th when he will have another surgery that should help make our little boy feel so much better. We're hoping that if we fix the ear issues, then we can truly determine if he needs a different anti-seizure med or if he can tolerate the one he is on now. Should also give us a better notion of whether he is truly exhibiting behavior issues or if he just is tired of his ears hurting. Lot of pressure to put on two tiny tubes, but hey, it's where we're out.
For now, we're trying to keep him comfortable, and trying to push him on the signs and coherency of words when we talk to him. I use signs to tell him every Tuesday and Thursday night that "Daddy is at work, Bradley sits with mom in her chair. If he fights, then we go to his bed." He looks at my hands and he listens to my words and the last few attempts have been much better for both of us, I am so relieved!
Stand by for further developments as they come next Thursday for surgery day.
Wednesday, October 22, 2014
Go Ask Sydney
As some know, I try to keep our extended family updated on the kids on Facebook. Facebook is not for everyone, it's not my favorite thing either, but then I'm more of a gamer, so that is interesting to me. But other than that, I try to make sure we include updates on the girls and Bradley, and I try to include the tidbits of humor in our lives that make everyday go by a little better. That's where Sydney comes in. No matter how difficult a day, a week, a month may be, Sydney finds a way to make us laugh.
Here's just a few little examples to set up today's sequence of events:
When Sydney was three, she took her sister's toy. Not knowing this we searched everywhere for it. Frustrated, grandma asked Sydney if she had taken the toy. She said No. Grandma then said to her, well we're looking for it if you see it. Sydney nods and turns to walk down the hall towards her room, on the way she says in her three year old "whisper"..."Now where did I put that?"
Or this one, not too long later, our remotes came up missing, for like three days. We searched high and low and I tore the house apart! Quite possibly, my house was cleaner than it had ever been. As frustration settled in, I was about to give up. I had searched every drawer and cupboard in the house, and nothing. Without thinking much about it I looked at Sydney and asked her: "Hey, have you seen our remotes?" Never expecting an answer. She didn't answer, but she did show me to the only drawer I had not looked in, which was the top nightstand drawer of hers. I had searched all her chest of drawers and her bed, and her toy box....even her sock drawer in her nightstand, nothing! But I somehow missed looking in her nightstand top drawer. Sure enough, they were in the drawer. To this day I can't help but wonder, did I look but she moved them around? And I wonder, how long would she have let us keep looking before she pulled them out herself. That day, made a note to ourselves, always ask Sydney specifically, because the general "Anybody seen the remote?" Was not specific enough.
Fast forward a bit. When Madison was in first grade, Sydney and I walked her to school. I always put my military ID in my back pocket. On Mondays, I would come in and put the ID on the bar in the kitchen and went in to get ready for work. I came back in and the ID was gone. I took my wallet apart and the junk drawer...nothing. Finally, I glanced at Sydney, remembered the remote incident and for kicks and giggles, I asked her if she'd seen it. She just looked at me, blinked then left the room. I followed her to her room where she picked up her bathrobe and pulled my ID out of the pocket and handed it to me. Good thing because I would never have thought to check her bathrobe pocket until I did laundry. Sigh....
Over time and many discussions and lectures, the kleptomaniac side of her lessened and fewer things have disappeared in our house. But jump to this morning with me. There is this old plastic measuring cup with a handle that Grandpa uses for putting water in the Hotshot to make his morning coffee. When we got up this morning, Eric and I noticed that it was gone. Considering Bradley thinks the handled cup is the coolest thing, we immediately thought he'd swiped it. Thus began an in depth search of all his areas, all places of his height, everywhere he might have stashed, dropped or thrown the thing. Nothing, nowhere to be found. By then, grandpa was up and took the news much better than we feared, and also looked around a bit. I finished making Madison's lunch and noticed Eric going in to check the girls room again. By now, Sydney (who was sleeping in because she has a two week Fall Break) was awake and Eric apparently asked her if she'd seen it. Next thing I know, Sydney leads Eric to the garage, and a cupboard. Inside sits the lost measuring cup. Turns out, yesterday, while playing ball over the gate, Bradley grabbed and tossed the measuring cup at Sydney. So she popped it into the cupboard so he couldn't get it again. She just failed to let anyone know.
Moral of the Story? Go to Sydney first. Like the Godfather, if she didn't order it, she knows about it. The result, in our house, Sydney always has and will continue to be the catalyst of humor. The darkest storms are going to weaken under her light, the heaviest burdens are going to lessen through her Will. And between her and Bradley, put it away or experience the consequences. ;-).
Have a great Wednesday, Day 22 of the blog Challenge, proving that life is life, that it is what you make it and it is so much better when you take the time to laugh along the way!
Over time and many discussions and lectures, the kleptomaniac side of her lessened and fewer things have disappeared in our house. But jump to this morning with me. There is this old plastic measuring cup with a handle that Grandpa uses for putting water in the Hotshot to make his morning coffee. When we got up this morning, Eric and I noticed that it was gone. Considering Bradley thinks the handled cup is the coolest thing, we immediately thought he'd swiped it. Thus began an in depth search of all his areas, all places of his height, everywhere he might have stashed, dropped or thrown the thing. Nothing, nowhere to be found. By then, grandpa was up and took the news much better than we feared, and also looked around a bit. I finished making Madison's lunch and noticed Eric going in to check the girls room again. By now, Sydney (who was sleeping in because she has a two week Fall Break) was awake and Eric apparently asked her if she'd seen it. Next thing I know, Sydney leads Eric to the garage, and a cupboard. Inside sits the lost measuring cup. Turns out, yesterday, while playing ball over the gate, Bradley grabbed and tossed the measuring cup at Sydney. So she popped it into the cupboard so he couldn't get it again. She just failed to let anyone know.
Moral of the Story? Go to Sydney first. Like the Godfather, if she didn't order it, she knows about it. The result, in our house, Sydney always has and will continue to be the catalyst of humor. The darkest storms are going to weaken under her light, the heaviest burdens are going to lessen through her Will. And between her and Bradley, put it away or experience the consequences. ;-).
Have a great Wednesday, Day 22 of the blog Challenge, proving that life is life, that it is what you make it and it is so much better when you take the time to laugh along the way!
Tuesday, October 21, 2014
Day 21 of the 21 Challenge. :-)
10/21/2014
The magic of 21, this should be something special with a wealth of Awareness. Um, not really. I was thinking today of those that were waiting for us when we brought Bradley home from the hospital, they were the ones that were special. We were lucky to have Bradley where we were, having him in Japan was a gift beyond measure. The staff at the hospital were incredible and I love my midwife much like I would love a sister had God seen fit to give me one. But just as Fate put all of us in the same orbit at just the right moment to literally save Eric and I, the ones that were waiting at home did too.
We had the Rays...Chris and Sonya who cradled our girls like they were their own. Indulging them in Ice cream and trips to the park. They kept our then 5 and 7 year olds and made sure that they were safe and sound and that Sydney could pronounce "Bradley" before she got to the hospital. A week later when I would have my own bleeding scare and be back in the hospital, Sonya would walk into my room in tears because she couldn't get word about what was happening to me because she kept calling my phone and I had no idea where it was. They would bring us food and help hold our son, just being with us to help us through yet another tough night. When we finally did get things more settled at home, they would come up for days or weeks and stay and help with the girls and Bradley. They would both love on our all of our kids, and Uncle Chris would lay on the floor and work Bradley's limbs one by one, making every one stronger. Touchstones in a world turned upside down. Reminders that the love they had before for us, was just stronger now that we had this special little boy and his extra chromosome.
While they were taking care of the girls for us, the rest of our friends were making the trip to see us and meet Bradley. Most would have waited and visited when we got home, but Bradley came with gifts: shock, worry, fear, and guilt. Our friends came throughout the day, every day in the hospital to meet him, to hold him, to shower him in joy. They saved us too. They took the sting out of the word diagnosis and they returned the happiness of a new baby boy. Every one who came into our room and willingly asked to hold him reveled in how beautiful he was, how perfect. Some also brought stories or experiences of those they knew that were like Bradley. Words of comfort, and hope.
When we came home, we found a banner outside our door welcoming us and our Bradley Home. Between my dear friend and neighbor, and Eric's close friends...I didn't cook for the first few weeks. They knew my favorites and supplied them. :-) Lucky me! We even had one friend that medicated himself to fight off his cat allergies to come and make us an amazing meal. He visited us in the hospital and then came over the night we got home to make sure we had what we needed, then returned a few days later to spoil us with his considerable culinary skills.
We also received bouquets of flowers, teddy bears, and other gifts. Maybe more than we would have received had Bradley lacked that Extra chromosome? Maybe... The thing is, we were surrounded by some pretty amazing friends and I know that had we just had a baby, they would have rallied around to ease the first few days and to come and love on the baby. With Bradley there was so much shock for us, and I know for our friends. We didn't know, they didn't know. We were left reeling, and so were they. I think my friend's husband might have voiced the most common questions they all must have had: "What do we say? What do we do?" Her reply was simply: "Congratulate them, he's a baby!"
And that was that. He was a baby, a beautiful baby boy that wrapped people around his tiny little fingers. And that was all they needed. He was here, he was ours and they loved us, so they loved him. Maybe it was a big shock, and maybe not what we had expected. But he made it. He survived while I battled an aggressive form of Melanoma while pregnant with him, and everyone knew that. So why did they rally so much? Was it the Cancer or the extra chromosome? Does it actually matter? No. Our friends were the Family we needed, they helped us through one frightening moment to another. And they helped us let go of the dream we thought we were having to embrace the one we got. They were the definition of love and compassion and they wrapped us in it. Why do I still keep up on Facebook and Bradley's Buddy Brigade Facebook page? Those friends, that family are spread out all over the world and we don't want to lose them. They are part of that moment in time, that beautiful time when we fit in somewhere and knew we were Home. I miss them everyday and send them love and Blessings every chance I get.
Special 21? Yeah, they gave us so much then that we still feel it today!
The magic of 21, this should be something special with a wealth of Awareness. Um, not really. I was thinking today of those that were waiting for us when we brought Bradley home from the hospital, they were the ones that were special. We were lucky to have Bradley where we were, having him in Japan was a gift beyond measure. The staff at the hospital were incredible and I love my midwife much like I would love a sister had God seen fit to give me one. But just as Fate put all of us in the same orbit at just the right moment to literally save Eric and I, the ones that were waiting at home did too.
We had the Rays...Chris and Sonya who cradled our girls like they were their own. Indulging them in Ice cream and trips to the park. They kept our then 5 and 7 year olds and made sure that they were safe and sound and that Sydney could pronounce "Bradley" before she got to the hospital. A week later when I would have my own bleeding scare and be back in the hospital, Sonya would walk into my room in tears because she couldn't get word about what was happening to me because she kept calling my phone and I had no idea where it was. They would bring us food and help hold our son, just being with us to help us through yet another tough night. When we finally did get things more settled at home, they would come up for days or weeks and stay and help with the girls and Bradley. They would both love on our all of our kids, and Uncle Chris would lay on the floor and work Bradley's limbs one by one, making every one stronger. Touchstones in a world turned upside down. Reminders that the love they had before for us, was just stronger now that we had this special little boy and his extra chromosome.
While they were taking care of the girls for us, the rest of our friends were making the trip to see us and meet Bradley. Most would have waited and visited when we got home, but Bradley came with gifts: shock, worry, fear, and guilt. Our friends came throughout the day, every day in the hospital to meet him, to hold him, to shower him in joy. They saved us too. They took the sting out of the word diagnosis and they returned the happiness of a new baby boy. Every one who came into our room and willingly asked to hold him reveled in how beautiful he was, how perfect. Some also brought stories or experiences of those they knew that were like Bradley. Words of comfort, and hope.
When we came home, we found a banner outside our door welcoming us and our Bradley Home. Between my dear friend and neighbor, and Eric's close friends...I didn't cook for the first few weeks. They knew my favorites and supplied them. :-) Lucky me! We even had one friend that medicated himself to fight off his cat allergies to come and make us an amazing meal. He visited us in the hospital and then came over the night we got home to make sure we had what we needed, then returned a few days later to spoil us with his considerable culinary skills.
We also received bouquets of flowers, teddy bears, and other gifts. Maybe more than we would have received had Bradley lacked that Extra chromosome? Maybe... The thing is, we were surrounded by some pretty amazing friends and I know that had we just had a baby, they would have rallied around to ease the first few days and to come and love on the baby. With Bradley there was so much shock for us, and I know for our friends. We didn't know, they didn't know. We were left reeling, and so were they. I think my friend's husband might have voiced the most common questions they all must have had: "What do we say? What do we do?" Her reply was simply: "Congratulate them, he's a baby!"
And that was that. He was a baby, a beautiful baby boy that wrapped people around his tiny little fingers. And that was all they needed. He was here, he was ours and they loved us, so they loved him. Maybe it was a big shock, and maybe not what we had expected. But he made it. He survived while I battled an aggressive form of Melanoma while pregnant with him, and everyone knew that. So why did they rally so much? Was it the Cancer or the extra chromosome? Does it actually matter? No. Our friends were the Family we needed, they helped us through one frightening moment to another. And they helped us let go of the dream we thought we were having to embrace the one we got. They were the definition of love and compassion and they wrapped us in it. Why do I still keep up on Facebook and Bradley's Buddy Brigade Facebook page? Those friends, that family are spread out all over the world and we don't want to lose them. They are part of that moment in time, that beautiful time when we fit in somewhere and knew we were Home. I miss them everyday and send them love and Blessings every chance I get.
Special 21? Yeah, they gave us so much then that we still feel it today!
Monday, October 20, 2014
Everyone Deserves Acceptance
Hello Day 20!
Every Sunday morning we take the girls to the Community Center for drop-in basketball. It's a blast. Somehow, a free just drop in and play turned into a practice, because a Coach is now running the time and it's a clinic. My girls, the only two girls in the class. Madison is fierce, she's learning and developing as a player by leaps and bounds. We were a little worried about Sydney at first, she has a tendency to let her nerves get the better of her. They are so different, it's amazing sometimes. And it's funny too. We arrive at practice and Madison says: "Hi" to the Coach, then proceeds to ask how he is, and his week was. And he laughed as he told us that it always cracks him up because that's the big difference between coaching the girls and the boys - he says Hi to the boys and they might grunt back but mostly a nod. Not Madison, everything happens with passion, and everyone is worth the time to connect. I love that about that kid!
Coach split the kids into teams and usually my girls are against each other. It was interesting though when they did play on the same team for a bit, Sydney was more timid. She's a learner that does best by doing, but in the area of basketball, she needs a book to explain all the rules and the ideas of how to play in order to really attack the game. It's fascinating that there is this shift for her. Madison is a book learner, and by doing, but in her game play, the more she has hands on, the better she learns it. She's the practice makes perfect kid. Sydney is the give me a start and then I'll show you how to make it perfect.
So the Coach put Sydney on one team and Madison on the other. Madison is older, at that awkward twelve years old where some things are coming along a lot quicker than others. Ball control is pretty good, just not on the off-hand. Her baskets are coming along, and now with a little more consistency...though she thinks she can hit the three pointers...maybe not quite yet. But she's forgetful, she gets moving and forgets that you just told her to pass that off, gets in the same situation and doesn't pass it off. You know stuff like that. But for the most part, she's pretty accepted on the team and gets the ball, passes, and shoots...rebounds well... all that. She's not the best out there, she doesn't pretend to be, but she sure doesn't let that stand in her way. She believes she should get to play and she's going to earn her place on the team. It works well for her. The boys laugh with her and they accept her. They play competitive games like "Knockout" and just this Sunday, she actually won.
As for Sydney, well... it's not that they don't accept her, sometimes I think they just would forget she was there. She's pretty quiet, intense and watchful, but quiet nonetheless. So back to the game. Coach set the kids up, and we watched as Sydney and three boys were grouped and waiting for the coach to come give them some pointers before starting the game. We watched Sydney literally, stepping backwards out of the group, isolating herself further and further away from the other boys. I watched her a minute and then she grabbed her hands in front of her. Ah...time to step in. So I called her over and we had a chat. You see, that hand grabbing is something she does when her nerves are shutting her down. So I asked her what was up and her answer was: "The boys are talking about things that I don't know anything about. And I don't think they like me."
Dad and I told her, "Hey, this is not a team, this is drop-in basketball where a really nice man who is also a really great coach is giving his time to be here to teach all of you about basketball. You've played before, you've been on a team that has won and lost and you have been on the court experiencing those, you've shot baskets and made them in other games. Just because they're boys doesn't mean that you shouldn't be here or that you can't play at their level. If you don't know, ask, they'll tell you, if they don't want to tell you the Coach will. All you have to do here is learn all you can and have fun, no one is here to yell at you, and no one is going to yell at you." Well, that seemed to calm her down, she went back out to her team, maybe not with them, but near and not wringing her hands as much.
Like I said, the Coach is pretty great. He knows his players and he knows how to reach them on an individual and a team level. This man took the time to get down one-on-on with Sydney, telling her what to do, where to go, how to proceed. He gave her a mental map that she had no problem following. And..he matched her against her sister. There is something about Sydney that makes her really come out of her shell when it comes to her sister. I want to believe that she wants Madison's approval, or even admiration...I would settle for healthy competition. And I don't mind them finding their own areas to compete, that's healthy siblings...all that aside though, I think Sydney just really wants to beat her sister.
She played hard, she played tough, and she fought hard. But as much as she was improving and playing, some of the boys on her team wouldn't let her have the ball. So then the Coach made one more change...he put his own son on Sydney's team. Now the Coach has four kids, and I don't know how the older ones play, but his two youngest...yeah, they tear up the floor. And they are both beyond decent young men. The son he put on Sydney's team is a grade above her in school, and also goes to her school. Being sixth grade, I'm quite certain his knowledge of her existence is strictly connected to this gym time. That being said, while on her team, he kept feeding her the ball and she stumbled at first, I think shocked to have the ball in her hands; but he kept finding opportunities, and Sydney started putting the baskets in, and the rebounds happened and she was laying ball again. Little Hoops was back in the game and playing like we know she can play and better than we could hope. We were thrilled and truly enjoyed being able to cheer for both sides. The Coach was pleased and even made the point to let her know she was doing awesome. We would see them the next day at the Teacher conferences, us on the way out of Sydney's, him on the way into his son's. He stopped and told Eric just how proud he was of Sydney for working through her nerves and really playing hard and playing so great. Nice guy, teaching kids the right way to play, on the court and off.
So yeah, drop-in basketball, the highlight of our Sundays. Bradley cheers or watches his movies and Dad and I just soak it all up. Then after Basketball, that's our special time to find something to do that carries the joy of the court into our time as a family. The girls will start fighting as soon as one of them gets put into the shower at home, but until we get home, it's just a really special time.
Let the girls play, let the girls compete...they cheer for each other and they attack each other...but they are sisters through and through, and I am hoping that someday, they are going to be there for each other...I just know it! Or at least I tell myself that at night to help me sleep! :-) HAHA
See, Acceptance is important for everyone. We all want it, we all feel better when we have it. The girls want it, and need it...and they deserve it. So does their brother. So do you and so do I! Let's just decide to accept and allow that the more differences there are among us, the better the ride on the roller coaster we call this life!
Happy Monday night! Royals are playing tomorrow...World Series...and I just can't wait!
Every Sunday morning we take the girls to the Community Center for drop-in basketball. It's a blast. Somehow, a free just drop in and play turned into a practice, because a Coach is now running the time and it's a clinic. My girls, the only two girls in the class. Madison is fierce, she's learning and developing as a player by leaps and bounds. We were a little worried about Sydney at first, she has a tendency to let her nerves get the better of her. They are so different, it's amazing sometimes. And it's funny too. We arrive at practice and Madison says: "Hi" to the Coach, then proceeds to ask how he is, and his week was. And he laughed as he told us that it always cracks him up because that's the big difference between coaching the girls and the boys - he says Hi to the boys and they might grunt back but mostly a nod. Not Madison, everything happens with passion, and everyone is worth the time to connect. I love that about that kid!
Coach split the kids into teams and usually my girls are against each other. It was interesting though when they did play on the same team for a bit, Sydney was more timid. She's a learner that does best by doing, but in the area of basketball, she needs a book to explain all the rules and the ideas of how to play in order to really attack the game. It's fascinating that there is this shift for her. Madison is a book learner, and by doing, but in her game play, the more she has hands on, the better she learns it. She's the practice makes perfect kid. Sydney is the give me a start and then I'll show you how to make it perfect.
So the Coach put Sydney on one team and Madison on the other. Madison is older, at that awkward twelve years old where some things are coming along a lot quicker than others. Ball control is pretty good, just not on the off-hand. Her baskets are coming along, and now with a little more consistency...though she thinks she can hit the three pointers...maybe not quite yet. But she's forgetful, she gets moving and forgets that you just told her to pass that off, gets in the same situation and doesn't pass it off. You know stuff like that. But for the most part, she's pretty accepted on the team and gets the ball, passes, and shoots...rebounds well... all that. She's not the best out there, she doesn't pretend to be, but she sure doesn't let that stand in her way. She believes she should get to play and she's going to earn her place on the team. It works well for her. The boys laugh with her and they accept her. They play competitive games like "Knockout" and just this Sunday, she actually won.
As for Sydney, well... it's not that they don't accept her, sometimes I think they just would forget she was there. She's pretty quiet, intense and watchful, but quiet nonetheless. So back to the game. Coach set the kids up, and we watched as Sydney and three boys were grouped and waiting for the coach to come give them some pointers before starting the game. We watched Sydney literally, stepping backwards out of the group, isolating herself further and further away from the other boys. I watched her a minute and then she grabbed her hands in front of her. Ah...time to step in. So I called her over and we had a chat. You see, that hand grabbing is something she does when her nerves are shutting her down. So I asked her what was up and her answer was: "The boys are talking about things that I don't know anything about. And I don't think they like me."
Dad and I told her, "Hey, this is not a team, this is drop-in basketball where a really nice man who is also a really great coach is giving his time to be here to teach all of you about basketball. You've played before, you've been on a team that has won and lost and you have been on the court experiencing those, you've shot baskets and made them in other games. Just because they're boys doesn't mean that you shouldn't be here or that you can't play at their level. If you don't know, ask, they'll tell you, if they don't want to tell you the Coach will. All you have to do here is learn all you can and have fun, no one is here to yell at you, and no one is going to yell at you." Well, that seemed to calm her down, she went back out to her team, maybe not with them, but near and not wringing her hands as much.
Like I said, the Coach is pretty great. He knows his players and he knows how to reach them on an individual and a team level. This man took the time to get down one-on-on with Sydney, telling her what to do, where to go, how to proceed. He gave her a mental map that she had no problem following. And..he matched her against her sister. There is something about Sydney that makes her really come out of her shell when it comes to her sister. I want to believe that she wants Madison's approval, or even admiration...I would settle for healthy competition. And I don't mind them finding their own areas to compete, that's healthy siblings...all that aside though, I think Sydney just really wants to beat her sister.
She played hard, she played tough, and she fought hard. But as much as she was improving and playing, some of the boys on her team wouldn't let her have the ball. So then the Coach made one more change...he put his own son on Sydney's team. Now the Coach has four kids, and I don't know how the older ones play, but his two youngest...yeah, they tear up the floor. And they are both beyond decent young men. The son he put on Sydney's team is a grade above her in school, and also goes to her school. Being sixth grade, I'm quite certain his knowledge of her existence is strictly connected to this gym time. That being said, while on her team, he kept feeding her the ball and she stumbled at first, I think shocked to have the ball in her hands; but he kept finding opportunities, and Sydney started putting the baskets in, and the rebounds happened and she was laying ball again. Little Hoops was back in the game and playing like we know she can play and better than we could hope. We were thrilled and truly enjoyed being able to cheer for both sides. The Coach was pleased and even made the point to let her know she was doing awesome. We would see them the next day at the Teacher conferences, us on the way out of Sydney's, him on the way into his son's. He stopped and told Eric just how proud he was of Sydney for working through her nerves and really playing hard and playing so great. Nice guy, teaching kids the right way to play, on the court and off.
So yeah, drop-in basketball, the highlight of our Sundays. Bradley cheers or watches his movies and Dad and I just soak it all up. Then after Basketball, that's our special time to find something to do that carries the joy of the court into our time as a family. The girls will start fighting as soon as one of them gets put into the shower at home, but until we get home, it's just a really special time.
Let the girls play, let the girls compete...they cheer for each other and they attack each other...but they are sisters through and through, and I am hoping that someday, they are going to be there for each other...I just know it! Or at least I tell myself that at night to help me sleep! :-) HAHA
See, Acceptance is important for everyone. We all want it, we all feel better when we have it. The girls want it, and need it...and they deserve it. So does their brother. So do you and so do I! Let's just decide to accept and allow that the more differences there are among us, the better the ride on the roller coaster we call this life!
Happy Monday night! Royals are playing tomorrow...World Series...and I just can't wait!
Sunday, October 19, 2014
That Day of Rememberance in the Middle
Day 19: Remember Your Blessings
Last week, in the midst of Breast Cancer Awareness and Down syndrome Awareness, there was this one special day to remember the babies. October 15th was set aside as the day to remember the babies lost before birth and after. My heart reaches out to embrace the women I love dearly who have had this loss, my heart reaches to the men, because the pain doesn't just find the moms, dads feel it too.
I've known too many who have lost and I have bowed my head in sorrow at their losses. I have searched my head and heart and have prayed that God would give me the words to say. There are no words that are going to heal the pain, but for someone who feels her heart breaking for a loved one's pain, I can pray that I won't manage to say the wrong thing. Sometimes I think that silence is best, that the holding of a hand while the pain is given the chance to flow to me, that perhaps I can help carry that for at least a little while.
I've been Blessed with three children, after three pregnancies. Once I finally had Madison safe in the womb, I kept my babies. Before Madison, we thought we were going to love a whole bunch of animals until we could afford to adopt. It wasn't that I couldn't carry, it was simply that I couldn't successfully conceive. Madison was a product of fierce determination by one stubborn doc, and one curious staff that were willing to fill in whenever he wasn't available. Sometimes even a miracle needs a little help to get started.
I tell you this about me to tell you about this:
Sweet Parents, walking out of Balboa, I see you. I see how he is supporting you, I see how you are holding yourself rigid and tall, but look to be moments from shattering into a million pieces. I see how you are avoiding looking at the sudden influx of babies that are all over the place. But mostly, I see the powder blue blanket across your arm, clutched in white-knuckled hands. And as I see you go by in the span of moments, for me they are moments slowed and spread out over a lifetime, the lifetime of the child you aren't bringing home. I don't know your pain, I've never lost like you. I do know how it feels to love the baby you're holding, and yet wish with all your heart that you would be given a tiny baby of your own to hold and love. And I've been well into pregnancy and have someone I love lose her baby; desperately wanting to comfort and knowing at the same time I am THAT reminder, me with my big belly.
Sweet Parents, I want to give you hope, but I know it doesn't work out for everyone. I have held the babies of those that finally did, and I have loved them with joy because touching a miracle will do that. And I have hugged those that still want but aren't meant to have children: medical, timing, whatever the reason. And they find that there are other ways for life to provide its wealth of miracles. I don't know if parenthood is going to work out for you, but I said a prayer for you as we passed, hoping that loss will be eased and that the light that comes with love and joy will find you.
Even had I known about that extra chromosome before Bradley was born...I would never have squandered the gift I was given, because I am not built that way, and because I know so many who have lost. A miracle is a miracle, ask a mom with empty womb and empty arms...surely, a baby is a baby. It has always been that way for me, I think I know quite a few who would trade empty for a baby like mine, because such Blessings only come one in every seven hundred or so.
Happy Sunday Folks. Remember!!! Blessings on you, I see you, I respond to your pain and your loss and my prayers are with you.
Last week, in the midst of Breast Cancer Awareness and Down syndrome Awareness, there was this one special day to remember the babies. October 15th was set aside as the day to remember the babies lost before birth and after. My heart reaches out to embrace the women I love dearly who have had this loss, my heart reaches to the men, because the pain doesn't just find the moms, dads feel it too.
I've known too many who have lost and I have bowed my head in sorrow at their losses. I have searched my head and heart and have prayed that God would give me the words to say. There are no words that are going to heal the pain, but for someone who feels her heart breaking for a loved one's pain, I can pray that I won't manage to say the wrong thing. Sometimes I think that silence is best, that the holding of a hand while the pain is given the chance to flow to me, that perhaps I can help carry that for at least a little while.
I've been Blessed with three children, after three pregnancies. Once I finally had Madison safe in the womb, I kept my babies. Before Madison, we thought we were going to love a whole bunch of animals until we could afford to adopt. It wasn't that I couldn't carry, it was simply that I couldn't successfully conceive. Madison was a product of fierce determination by one stubborn doc, and one curious staff that were willing to fill in whenever he wasn't available. Sometimes even a miracle needs a little help to get started.
I tell you this about me to tell you about this:
Sweet Parents, walking out of Balboa, I see you. I see how he is supporting you, I see how you are holding yourself rigid and tall, but look to be moments from shattering into a million pieces. I see how you are avoiding looking at the sudden influx of babies that are all over the place. But mostly, I see the powder blue blanket across your arm, clutched in white-knuckled hands. And as I see you go by in the span of moments, for me they are moments slowed and spread out over a lifetime, the lifetime of the child you aren't bringing home. I don't know your pain, I've never lost like you. I do know how it feels to love the baby you're holding, and yet wish with all your heart that you would be given a tiny baby of your own to hold and love. And I've been well into pregnancy and have someone I love lose her baby; desperately wanting to comfort and knowing at the same time I am THAT reminder, me with my big belly.
Sweet Parents, I want to give you hope, but I know it doesn't work out for everyone. I have held the babies of those that finally did, and I have loved them with joy because touching a miracle will do that. And I have hugged those that still want but aren't meant to have children: medical, timing, whatever the reason. And they find that there are other ways for life to provide its wealth of miracles. I don't know if parenthood is going to work out for you, but I said a prayer for you as we passed, hoping that loss will be eased and that the light that comes with love and joy will find you.
Even had I known about that extra chromosome before Bradley was born...I would never have squandered the gift I was given, because I am not built that way, and because I know so many who have lost. A miracle is a miracle, ask a mom with empty womb and empty arms...surely, a baby is a baby. It has always been that way for me, I think I know quite a few who would trade empty for a baby like mine, because such Blessings only come one in every seven hundred or so.
Happy Sunday Folks. Remember!!! Blessings on you, I see you, I respond to your pain and your loss and my prayers are with you.
Saturday, October 18, 2014
For the Win!
Day 18: Sunny, Partly Cloudy - Kind of Perfect
In our time with Bradley, we have learned some very valuable lessons. I'll give you a couple examples:
1. Always check your clamps, cause the kind of mess that could ensue is epic!
2. No added Fiber...Dear Lord, please remember this...there is no movement when there is added Fiber!
3. That extended playtime in an attempt to tire him out, um...yeah, about that... Try an 11 or 12 crash time, a lot of crying and forget the theory of sleeping through the night. He can't handle coming down off that kind of over stimulation all that quickly or all that well.
4. Don't make plans. When you make plans something always happens to get in the way and someone always ends up upset. I don't cry or anything, but you know, I get disappointed, it's the girls, they're the ones that cry.
But here's the beauty of Rule #4. Spontaneity. You know that saying: "Life Happens while you're making other plans"? Yeah, that's not us. Life happens here and now, it's when we start trying to make plans that the stuff that shouldn't happen does.
Need an example? Sure. How about the year Eric turned 40. We were determined to go to Las Vegas so that he would actually celebrate and not be sitting on the couch. We had so many plans, where we were staying, had the room booked, had friends set to meet us in Vegas to help us celebrate. We were ready. And then Bradley got a cold, reacted to the antibiotic, ended up with a small amount of fluid on his ears that turned into a burst ear drum, that moved into his lungs, and resulted in him being taken by ambulance from the ER to the hospital to spend five days there for Pneumonia, finally coming home on Christmas Day.
Another downside, the girls are very used to the change of plans routine. They find out less and less from us about potential surprises, because they just don't take it well when something happens and we don't get to move forward with the surprise. Madison is very vocal, Sydney is very internal. Sydney's reaction is the one that scares me, she's more like a volcano getting ready to explode.
But to all this, there is an up side. There is the fun of getting up to face the day, taking stock and deciding that today the little boy who has painful ears with no infection (which is so wrong) is doing well enough that we should go somewhere. It's showing up at the San Diego Safari Park and hearing your daughters complain that the Park is boring, only to hear them squeal with delight about all the animals, and the tram, and by the time we reach the Gorillas, parents are getting grateful hugs because this place is amazing and they're having the best day of their lives. Yes, with our girls it really does work like that! It's laughing out loud and from the belly as the girls hide behind me because the hungry geese are blocking the path and trying to eat Eric's shoe because he isn't feeding them. And then when the girls try to feed them, they end up throwing the food at the geese and running to feed the ducks cause the geese are eye-balling them and the ducks are so much nicer. I think this was Madison's favorite part of the day!
And to take Bradley into a situation where there are so many people and the likelihood of a meltdown is probable, what a gift when he doesn't. What a gift that when we decide what the Heck, let's push our luck and try the tram... he only tries to bail out of line three dozen times, but on the tram he sits on my lap like a trooper. He pulls my arms around him like I'm his seat belt, and every time I move my hand, he pulls it back down around him. We had a front row seat in our car, so he had no one to grab onto, and every time the tram stopped, he signed for it to "go again, more". Every time I pointed to an animal he pulled my hand down and pointed for me. And when we saw all the birds, he signed birds. Yeah and double yeah! :-)
We thought that was it, we thought that we had just had the best part of our day, that we had braved the tram and his potential melting and come out unscathed...but life had other plans. Life decided that it would be better to offer us a little more. We met one of our most beloved families after we got off the Tram ride. And believe it or not, that Park, is actually in the realm of a small world type park...we ran into them two more times until we met up at the entrance when the park closed and we made plans for dinner.
So for a day that started with an empty slot on the calendar, we filled each moment as it came, and made no plans until the very end. Luckily, that worked out better than one could hope. Our dinner with this family had the same quality as refilling the cracks in your spirit that life has a tendency to put there. Sitting with them, talking, laughing, being with Family...that is what life is truly about. We may not get to plan ahead for life's events like others, but we are fully aware that sometimes, life will take the lead and the stars will align so that the world will allow us a few moments of peace, and of joy.
And sometimes you just get lucky, that after a day at the Safari Park, an amazing time at dinner, followed by untold laps back and forth outside the restaurant; our son...the boy who can't seem to handle venting off of these type of liberties...managed to do just that once we got home and is already asleep and it's only 9:25. Whether or not he can stay asleep after such a day as today remains to be seen and is the very reason that I am closing out for the night and putting myself to bed too.
My son, our life, these girls...there are so many mysteries, and my job is to try to piece them all together, I just wish sometimes that someone would either turn on the light or let me take the blindfold off so I could have a fighting chance of figuring any of them out.
Today we were Blessed a hundredfold. It was everything he did and everything he didn't that made today great! And at the end of the day, the Blessing of spending time with some of our most favorite people, that's what puts your soul back on track and leaves you feeling loved!
How do you bring Acceptance and Awareness to how awesome your child with Down syndrome is? Trust that he or she is going to bring the best people into your life and that they are going to make so much of everything, better!
Have a great Saturday night!!!
In our time with Bradley, we have learned some very valuable lessons. I'll give you a couple examples:
1. Always check your clamps, cause the kind of mess that could ensue is epic!
2. No added Fiber...Dear Lord, please remember this...there is no movement when there is added Fiber!
3. That extended playtime in an attempt to tire him out, um...yeah, about that... Try an 11 or 12 crash time, a lot of crying and forget the theory of sleeping through the night. He can't handle coming down off that kind of over stimulation all that quickly or all that well.
4. Don't make plans. When you make plans something always happens to get in the way and someone always ends up upset. I don't cry or anything, but you know, I get disappointed, it's the girls, they're the ones that cry.
But here's the beauty of Rule #4. Spontaneity. You know that saying: "Life Happens while you're making other plans"? Yeah, that's not us. Life happens here and now, it's when we start trying to make plans that the stuff that shouldn't happen does.
Need an example? Sure. How about the year Eric turned 40. We were determined to go to Las Vegas so that he would actually celebrate and not be sitting on the couch. We had so many plans, where we were staying, had the room booked, had friends set to meet us in Vegas to help us celebrate. We were ready. And then Bradley got a cold, reacted to the antibiotic, ended up with a small amount of fluid on his ears that turned into a burst ear drum, that moved into his lungs, and resulted in him being taken by ambulance from the ER to the hospital to spend five days there for Pneumonia, finally coming home on Christmas Day.
Another downside, the girls are very used to the change of plans routine. They find out less and less from us about potential surprises, because they just don't take it well when something happens and we don't get to move forward with the surprise. Madison is very vocal, Sydney is very internal. Sydney's reaction is the one that scares me, she's more like a volcano getting ready to explode.
But to all this, there is an up side. There is the fun of getting up to face the day, taking stock and deciding that today the little boy who has painful ears with no infection (which is so wrong) is doing well enough that we should go somewhere. It's showing up at the San Diego Safari Park and hearing your daughters complain that the Park is boring, only to hear them squeal with delight about all the animals, and the tram, and by the time we reach the Gorillas, parents are getting grateful hugs because this place is amazing and they're having the best day of their lives. Yes, with our girls it really does work like that! It's laughing out loud and from the belly as the girls hide behind me because the hungry geese are blocking the path and trying to eat Eric's shoe because he isn't feeding them. And then when the girls try to feed them, they end up throwing the food at the geese and running to feed the ducks cause the geese are eye-balling them and the ducks are so much nicer. I think this was Madison's favorite part of the day!
And to take Bradley into a situation where there are so many people and the likelihood of a meltdown is probable, what a gift when he doesn't. What a gift that when we decide what the Heck, let's push our luck and try the tram... he only tries to bail out of line three dozen times, but on the tram he sits on my lap like a trooper. He pulls my arms around him like I'm his seat belt, and every time I move my hand, he pulls it back down around him. We had a front row seat in our car, so he had no one to grab onto, and every time the tram stopped, he signed for it to "go again, more". Every time I pointed to an animal he pulled my hand down and pointed for me. And when we saw all the birds, he signed birds. Yeah and double yeah! :-)
We thought that was it, we thought that we had just had the best part of our day, that we had braved the tram and his potential melting and come out unscathed...but life had other plans. Life decided that it would be better to offer us a little more. We met one of our most beloved families after we got off the Tram ride. And believe it or not, that Park, is actually in the realm of a small world type park...we ran into them two more times until we met up at the entrance when the park closed and we made plans for dinner.
So for a day that started with an empty slot on the calendar, we filled each moment as it came, and made no plans until the very end. Luckily, that worked out better than one could hope. Our dinner with this family had the same quality as refilling the cracks in your spirit that life has a tendency to put there. Sitting with them, talking, laughing, being with Family...that is what life is truly about. We may not get to plan ahead for life's events like others, but we are fully aware that sometimes, life will take the lead and the stars will align so that the world will allow us a few moments of peace, and of joy.
And sometimes you just get lucky, that after a day at the Safari Park, an amazing time at dinner, followed by untold laps back and forth outside the restaurant; our son...the boy who can't seem to handle venting off of these type of liberties...managed to do just that once we got home and is already asleep and it's only 9:25. Whether or not he can stay asleep after such a day as today remains to be seen and is the very reason that I am closing out for the night and putting myself to bed too.
My son, our life, these girls...there are so many mysteries, and my job is to try to piece them all together, I just wish sometimes that someone would either turn on the light or let me take the blindfold off so I could have a fighting chance of figuring any of them out.
Today we were Blessed a hundredfold. It was everything he did and everything he didn't that made today great! And at the end of the day, the Blessing of spending time with some of our most favorite people, that's what puts your soul back on track and leaves you feeling loved!
How do you bring Acceptance and Awareness to how awesome your child with Down syndrome is? Trust that he or she is going to bring the best people into your life and that they are going to make so much of everything, better!
Have a great Saturday night!!!
Friday, October 17, 2014
Extinction or Salvation?
Friday the 17th of the Blog Challenge...
Sometimes it can be really difficult to tough out some of the information that is out there about Down syndrome, and the community. While we parents are trying to sort our way through a minefield of school, social, and medical hazards; circling us like sharks finding chummed water are those that believe that children with Down syndrome are not worthy of life. New Zealand is confident that they can eradicate Down syndrome completely before the next generation. In Europe, you have parents that want to be able to sue for damages if a child is born and given the surprise diagnosis. More science is trying to determine the moment that the extra Chromosome attaches so that at conception it can be turned off and a child destined to have Down syndrome, won't.
But here's the thing, even though research for Down syndrome is severely under funded, the research happening is finding ways to help every single one of us. So as you hear those demanding that these are not babies that should be born, that these are babies that should be terminated as late as at birth...these people without worth; in fact, may save your life or the life of someone you love just because they exist.
What? I know, a lot to take in...but walk with me here and let's see how this works. Prepare yourself as I quote some science at you. I have talked before about researchers trying to understand how Alzheimer's begins and how to find a way to make it end. Alzheimer's often hits those with Down syndrome earlier and progresses faster. In fact, most have all the potential for Alzheimer's by age 12. Frightening prospect for the parent of an almost five year old boy. Okay, that's harsh, here's the better news. There are researchers that are currently discovering how plaque grows, how the neurons do and do not attach and a whole slew of other mind blowing (no pun intended) work, that leaves me scrambling to understand and learn more.
So there's one area that you would think would ensure the survival of those with an extra chromosome...and yet... not enough?
How about this. You may not know this yet, but those with Down syndrome have a higher likelihood to contract Leukemia. We endure a blood test every year just to check white blood cells with Bradley, one of the two scariest tests that he has a year. So the idea now is that there is some amplification of the 21st chromosome. Not the extra, just the 21st. Which means, even in someone with the standard number of Chromosomes, there are changes to the 21st Chromosome. So in those with a third chromosome, there is just more amplification. Horrible right? Very. But check this out, there is also something in the 21st Chromosome that fights the production of the neurogeneics that create tumors. the extra Chromosome has something that prevents the tumors from growing:
scientists have already identified at least two "tumor suppressor" genes that work by preventing the formation of new blood vessels around an actively growing solid tumor. The process of blood vessel formation, known as angiogenesis, is tightly controlled by pro- and anti-angiogenic genes, and we know now that two potent anti-angiogenic genes are on chromosome 21. Thus, the additional copy of these genes in people with Down syndrome would prevent the irrigation of incipient tumors, effectively starving them of oxygen and nutrients.
A second point: "the extra chromosome somehow prevents stem cells from dividing properly, so cancer cells that happen to occur, which resemble stem cells in many ways, fail to form a tumor."
So it comes down to potential, what is the potential for solving the mysteries of Alzheimer's and Cancer, and then ending them? The amount of potential information we can learn from someone with Down syndrome is phenomenal and yet the funding so often runs short. "In 2012, the National Institute of Health spent only 50 research dollars per individual with Down syndrome, seven times less than what was spent on people with multiple sclerosis, and 57 times less than what was spent on people with cystic fibrosis." This kind of discrepancy is hindering the race for a cure. The more we learn about Down syndrome and the accelerated aging process that effects them, the better for everyone.
So there you come back around...Extinction or Salvation? Maybe we better figure this out before it's too late. And maybe, just maybe, we should live and let live, stop forcing people to live in a preconceived bubble, let them live their lives, and know that an Extra Chromosome may make them different, but that's okay, we need different. Better yet, follow the suggestion of the writer of the article: "Next time you meet a person with Down syndrome, say thank you, because he or she may enable the cure for common health issues that will affect you and those you love." Joaquin M. Espinosa
If you have an interest to read more, please follow the link below to the article by Joaquin M. Espinosa: "Does Study of Down Syndrome Hold a Possible Cancer Cure?"
http://www.huffingtonpost.com/joaquin-m-espinosa/does-study-of-down-syndro_b_5979458.htmlcuring
Together we make the difference. One voice is all it takes to begin the journey towards a better tomorrow for our kids! Every person is here for a reason, don't erase the reason before you know why they are here. Those that refuse to see someone with Down syndrome as worthy of life should not be allowed free rein to consider changing our lives for us. Speak out, Speak up! Be the positive change and give people like Bradley a chance to have a place in this world.
Sometimes it can be really difficult to tough out some of the information that is out there about Down syndrome, and the community. While we parents are trying to sort our way through a minefield of school, social, and medical hazards; circling us like sharks finding chummed water are those that believe that children with Down syndrome are not worthy of life. New Zealand is confident that they can eradicate Down syndrome completely before the next generation. In Europe, you have parents that want to be able to sue for damages if a child is born and given the surprise diagnosis. More science is trying to determine the moment that the extra Chromosome attaches so that at conception it can be turned off and a child destined to have Down syndrome, won't.
But here's the thing, even though research for Down syndrome is severely under funded, the research happening is finding ways to help every single one of us. So as you hear those demanding that these are not babies that should be born, that these are babies that should be terminated as late as at birth...these people without worth; in fact, may save your life or the life of someone you love just because they exist.
What? I know, a lot to take in...but walk with me here and let's see how this works. Prepare yourself as I quote some science at you. I have talked before about researchers trying to understand how Alzheimer's begins and how to find a way to make it end. Alzheimer's often hits those with Down syndrome earlier and progresses faster. In fact, most have all the potential for Alzheimer's by age 12. Frightening prospect for the parent of an almost five year old boy. Okay, that's harsh, here's the better news. There are researchers that are currently discovering how plaque grows, how the neurons do and do not attach and a whole slew of other mind blowing (no pun intended) work, that leaves me scrambling to understand and learn more.
So there's one area that you would think would ensure the survival of those with an extra chromosome...and yet... not enough?
How about this. You may not know this yet, but those with Down syndrome have a higher likelihood to contract Leukemia. We endure a blood test every year just to check white blood cells with Bradley, one of the two scariest tests that he has a year. So the idea now is that there is some amplification of the 21st chromosome. Not the extra, just the 21st. Which means, even in someone with the standard number of Chromosomes, there are changes to the 21st Chromosome. So in those with a third chromosome, there is just more amplification. Horrible right? Very. But check this out, there is also something in the 21st Chromosome that fights the production of the neurogeneics that create tumors. the extra Chromosome has something that prevents the tumors from growing:
scientists have already identified at least two "tumor suppressor" genes that work by preventing the formation of new blood vessels around an actively growing solid tumor. The process of blood vessel formation, known as angiogenesis, is tightly controlled by pro- and anti-angiogenic genes, and we know now that two potent anti-angiogenic genes are on chromosome 21. Thus, the additional copy of these genes in people with Down syndrome would prevent the irrigation of incipient tumors, effectively starving them of oxygen and nutrients.
A second point: "the extra chromosome somehow prevents stem cells from dividing properly, so cancer cells that happen to occur, which resemble stem cells in many ways, fail to form a tumor."
So it comes down to potential, what is the potential for solving the mysteries of Alzheimer's and Cancer, and then ending them? The amount of potential information we can learn from someone with Down syndrome is phenomenal and yet the funding so often runs short. "In 2012, the National Institute of Health spent only 50 research dollars per individual with Down syndrome, seven times less than what was spent on people with multiple sclerosis, and 57 times less than what was spent on people with cystic fibrosis." This kind of discrepancy is hindering the race for a cure. The more we learn about Down syndrome and the accelerated aging process that effects them, the better for everyone.
So there you come back around...Extinction or Salvation? Maybe we better figure this out before it's too late. And maybe, just maybe, we should live and let live, stop forcing people to live in a preconceived bubble, let them live their lives, and know that an Extra Chromosome may make them different, but that's okay, we need different. Better yet, follow the suggestion of the writer of the article: "Next time you meet a person with Down syndrome, say thank you, because he or she may enable the cure for common health issues that will affect you and those you love." Joaquin M. Espinosa
If you have an interest to read more, please follow the link below to the article by Joaquin M. Espinosa: "Does Study of Down Syndrome Hold a Possible Cancer Cure?"
http://www.huffingtonpost.com/joaquin-m-espinosa/does-study-of-down-syndro_b_5979458.htmlcuring
Together we make the difference. One voice is all it takes to begin the journey towards a better tomorrow for our kids! Every person is here for a reason, don't erase the reason before you know why they are here. Those that refuse to see someone with Down syndrome as worthy of life should not be allowed free rein to consider changing our lives for us. Speak out, Speak up! Be the positive change and give people like Bradley a chance to have a place in this world.
Thursday, October 16, 2014
Day 16: My Guest Blogger
Sydney had to write a report about someone in her family. It was called an Ancestor Report., She chose to write about her brother. When it came time to present, her Dad and I brought Bradley in to her classroom. She prepared by bringing in all our books about Down syndrome, and she made sure she had a list of facts that she could refer to, to answer any questions. So for today's Blog, I am honored to have my daughter be my guest blogger. I typed up her Ancestor Report. I hope you enjoy, and if you take the time to read it, please leave her a comment, she'll be absolutely thrilled!
Bradley Burnett
Bradley Burnett is my little brother, so he is still alive. I chose to tell you about him because he has an interesting life. He was born in Yokosuka, Japan, January 9th 2010, and he was diagnosed with Down Syndrome. My sister and I are his two older siblings.
Bradley is four years old and he has already had sixteen surgeries. When he as 1 1/2, he couldn't digest his food, so he had to get a button inserted into his stomach. He might have it for the rest of his life. Ever since then, he has been a constant medical project. Once, he had a hernia, and another time he caught pneumonia. He was even born a little cross-eyed. Despite his disabilities, he will always be my favorite little boy.
I've told you about one half of my brother's life, so now for his happy side! Bradley is home-schooled, and his first language is American Sign Language. I, myself, am learning sign language too, so I can talk to him. Next to his shadow, I am his best friend, but whenever he finds his shadow he is all smiles and giggles. He love play blocks, and watch the Wiggles, and Sofia the First on TV. My brother also has an ipad. It is his favorite thing, and he can find anything he wants on it. He's a whiz with the thing! Also, Bradley laughs alot. He has such an adorable laugh, you have to laugh with him. (just not to loud, he's sensitive to noise)
Well, now you know everything about this blue-eyed, blonde-haired container of joy that loves to give out hugs and say "Bye-bye!" at passing cars. I enjoyed writing this story, and I hope you enjoyed reading everything. Now, you are probably wondering what Down Syndrome is. It is getting hard to explain what it is is, so, I brought a book based on it that you can read. That is my ancestor report on Bradley Burnett. I hope you found his life very interesting. Now that you've read about him, maybe you can meet him!
Sydney Burnett
5th Grade
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