So I told you that story yesterday, so I can tell this story today.
Our summer has been a frustration for potty training...but oh my goodness a completely different area of victory! Bradley has a favorite color: Orange. Most of the time if I try to get Bradley to work on something like signing, or language, colors or shapes...or...well, anything really...I get major push back. The only thing I have in my favor is that I know this little boy pretty well, we've spent some time together. ;-) So this is what I know. Bradley had started to show signs of choosing between two options. What I've learned is that he really, really likes orange. He likes orange enough that he will forget that I annoy him with this whole teach me something mentality and respond to orange.
So one day, I showed him two shirts so he could make a choice. I showed him a blue shirt and an orange shirt. Watching Bradley's eyes light up at the sight was inspiring. I held them both up and asked him "Which one? Blue or Orange?" And I signed both colors. He was excited and signed back orange. I was so excited I decided to push him a little more. ;-)
I pointed to myself and said, "I"...Bradley pointed to himself and said "I"
I signed and said, "Like" ... Bradley signed like and said "ike"
I signed and said, "Orange"...Bradley signed orange and said "urng"
I signed and said, "Shirt" ... Bradley signed shirt and said "rt"
I was so stunned I kept going:
I pointed to myself and said, "I"...Bradley pointed to himself and said "I"
I signed and said, "Like" ... Bradley signed like and said "ike"
I signed and said, "Orange"...Bradley signed orange and said "urng"
I signed and said, "Pants" ... Bradley signed pants and said "nts"
I clapped and cheered and he jumped into my arms (which is most like him falling forward and me catching him before he falls off the changing table...it's a work in progress!) squealing in delight! I wanted to just laugh, but of course I cried. I'm that much of a wimp.
But here's the best part! Yes, it gets better!
A couple days later, I decided that we were doing so well with him copying me, I decided to really push my luck. Back on the changing table, and here we go...back to work when he doesn't know he's back to work. ;-) Mom is getting wicked slick! I looked at him and signed the single sign for "I love you." And he gave me back the closed fist with one pinky up and shaking it...really close. So then I decided to go for broke...
I pointed to myself and said, "I"...Bradley pointed to himself and said "I"
I signed and said, "Love" ... Bradley signed love and said "uv"
I signed and said, "Daddy"...Bradley signed and said "Dadda"
I then ran through signing and saying "I Love" Sydney, great name sign and "Idnee", Madison "some verbal m sound" and a really good name sign" and last the sign for Mom and "Mama".
I cheered, he squealed with delight and he jumped (replace jump with falling with little grace) and I caught him. We hugged each other tight, him with a huge smile...me with a huge smile and yes - I cried my eyes out!
And as predicted and planned...the signs lead the way to the words. Bradley is signing "I love you" and he has decided that that takes too much time...so guess what? Mom is crying again? Oh yeah! After a few days of signing after me "I Love You" with me at school in the morning, he dropped his hands and just simply says to me: "Uv you" clear enough and just barely loud enough that his teachers hear him too! The even better news, he's doing the signs and the sounds with Dad, Madison and Sydney too. So life is really good!
We still sign with him and at some point I am hoping that he will spontaneously choose to say I love you with his hands or his mouth...I don't care which, but without someone prompting him first. I know, cherish this moment, what he's doing now. And I do, I really really do! I cherish him and I am so proud of him! But I also want to make sure that I push him to the next level...we have to keep him growing and always aiming a little higher!
But then...that's my job, I'm his mom!
I'm up for the Bradley Challenge, and I am hoping that when it's all said done...Awareness will lead to Acceptance and he will have the best life ever!
Have a great Wednesday!!! Stand by...Royals play tomorrow and The Walking Dead is back on Sunday, it's gonna be a good week! ;-)
Wednesday, October 7, 2015
Tuesday, October 6, 2015
Revisiting a Miracle....
In June of this year, Bradley gave me a stunning gift. And I recognized then that these gifts are so precious because they are unpredictable and come so far between... I decided to re-post this now to celebrate one of the greatest moments that I have had the joy to experience with Bradley. There are so many downs with Bradley's health that it can get heavy and depressing...luckily, there are ups that erase the sadness, the worry and the fear for just a few minutes and let the very light that glows inside of Bradley's soul spill out into the night. October is Down syndrome Awareness Month, of all months to share a triumph, I wanted to make sure it happened this month. Our first pediatrician told me: "He will amaze you." Said with such strong conviction, I knew he was right. I have watched in quiet awe and wonder the continuous proof that he was right. Last June, Bradley moved me past amazed to stunned. So here is a repost:
"And the World Slipped Away..."
June 7, 2015
Bradley doesn't say a lot, and the words he makes are usually little parts of words, and I have mentioned this before, but most the time they come in whispers. I can remember the moments when all three of my kids said "momma" and I cried all three times, it was that magical. With Bradley it was so unexpected I actually looked at him and said what, and he was kind enough to say it again. I hear it all the time now, and I thought I was good with it, but considering how little he truly says, it always makes my heart warm to hear it. And maybe that's the way it was always meant to be, maybe the lack of voice and the whispered words he occasionally drops were the catalyst I needed to make sure I was hearing him, that I was always ready to catch all the whispers.
We are still signing, more than ever. We sit together watching "Signing Time" and Bradley signs the little girl's namesign, and verbally says "Leah"; honestly, it's adorable! His voice is adorable. At school they tell me that he is making all the sounds but just not putting them all together to make words. His Speech teacher said she wants to push verbal next year, and I found myself saying "Great! But I need him to learn more signs too. I need him to be able to talk to me about what he needs and how he feels. I need him to realize that the word is so much easier than the sign that he uses the word." She smiled at me, and nodded...she understood and agreed. She thinks I am savvy... she doesn't realize I am just desperate to understand my son and not be the only one he can talk too.
I've been signing "I love you" to Bradley since he was born. Geesh, I've signed "I love you" to the girls their whole lives. They signed that back to me almost as soon as they were saying it...signs did not go well with the girls and I. They both had a lot to say and especially Sydney, wanted to say it starting at a baby ten months old. Bradley has been seeing it, and occasionally he will return an approximation of the sign back, sometimes to me, but usually to Madison or Sydney. Dad gets a lot. When I say approximation, I mean, he makes a fist and his index finger points up, then he shakes his hand. He doesn't have the dexterity to make the whole sign. But we know what he means.
Thursday night, I was leaving to go to dinner with my Aunt and two cousins (who I had not seen in too many years) ... I hugged and kissed the girls and then went for Bradley. Dad told him to tell Mommy bye-bye. As I bent to hug him bye, I told him "I love you" like I always do...this time, he said, "love you" back to me. I just held him in that moment; suspended between now and forever, when time slips away and the joy of his words filtered through my brain and into my heart. And I recognized the feeling of my soul being refilled and my heart overflowing because I have been lucky enough to have exerienced this kind of joy before. Slowly the world came back into view and sound and I could hear the others commenting on hearing him say it to me. And I could just look at Eric as he smiled, proud of his son and happy for me, commenting that it was the first time he ever said it to anyone. His first "I love you" and he gave it to me. How on earth did I ever deserve such a gift? How on earth did it not go to Daddy, as I wholy expected it would. All the years of worry, of fighting to keep him here, to get him healthy and build his immune system, his brain, his feeding...all the frustrations slipped away in one tiny heartbeat: his against mine, and every triumph we have paled for one slight moment in this moment. That was magic. I held my third miracle in my arms and felt utter Joy bcause he told me two little words.
In the mystery of Bradley, I have not heard it since. And I don't know when he will say it again, but I don't think if. I think when. He said it once, he will put it away for awhile and wait for the perfect moment to bring it back out, perhaps for good next time. Through all the times that my Joy for my son was stolen from me, from us...it is through Bradley himself that Joy returns in a rush. We have only to watch and listen so we don't ever miss it. My heart is full and I am truly Blessed.
"And the World Slipped Away..."
June 7, 2015
Bradley doesn't say a lot, and the words he makes are usually little parts of words, and I have mentioned this before, but most the time they come in whispers. I can remember the moments when all three of my kids said "momma" and I cried all three times, it was that magical. With Bradley it was so unexpected I actually looked at him and said what, and he was kind enough to say it again. I hear it all the time now, and I thought I was good with it, but considering how little he truly says, it always makes my heart warm to hear it. And maybe that's the way it was always meant to be, maybe the lack of voice and the whispered words he occasionally drops were the catalyst I needed to make sure I was hearing him, that I was always ready to catch all the whispers.
We are still signing, more than ever. We sit together watching "Signing Time" and Bradley signs the little girl's namesign, and verbally says "Leah"; honestly, it's adorable! His voice is adorable. At school they tell me that he is making all the sounds but just not putting them all together to make words. His Speech teacher said she wants to push verbal next year, and I found myself saying "Great! But I need him to learn more signs too. I need him to be able to talk to me about what he needs and how he feels. I need him to realize that the word is so much easier than the sign that he uses the word." She smiled at me, and nodded...she understood and agreed. She thinks I am savvy... she doesn't realize I am just desperate to understand my son and not be the only one he can talk too.
I've been signing "I love you" to Bradley since he was born. Geesh, I've signed "I love you" to the girls their whole lives. They signed that back to me almost as soon as they were saying it...signs did not go well with the girls and I. They both had a lot to say and especially Sydney, wanted to say it starting at a baby ten months old. Bradley has been seeing it, and occasionally he will return an approximation of the sign back, sometimes to me, but usually to Madison or Sydney. Dad gets a lot. When I say approximation, I mean, he makes a fist and his index finger points up, then he shakes his hand. He doesn't have the dexterity to make the whole sign. But we know what he means.
Thursday night, I was leaving to go to dinner with my Aunt and two cousins (who I had not seen in too many years) ... I hugged and kissed the girls and then went for Bradley. Dad told him to tell Mommy bye-bye. As I bent to hug him bye, I told him "I love you" like I always do...this time, he said, "love you" back to me. I just held him in that moment; suspended between now and forever, when time slips away and the joy of his words filtered through my brain and into my heart. And I recognized the feeling of my soul being refilled and my heart overflowing because I have been lucky enough to have exerienced this kind of joy before. Slowly the world came back into view and sound and I could hear the others commenting on hearing him say it to me. And I could just look at Eric as he smiled, proud of his son and happy for me, commenting that it was the first time he ever said it to anyone. His first "I love you" and he gave it to me. How on earth did I ever deserve such a gift? How on earth did it not go to Daddy, as I wholy expected it would. All the years of worry, of fighting to keep him here, to get him healthy and build his immune system, his brain, his feeding...all the frustrations slipped away in one tiny heartbeat: his against mine, and every triumph we have paled for one slight moment in this moment. That was magic. I held my third miracle in my arms and felt utter Joy bcause he told me two little words.
In the mystery of Bradley, I have not heard it since. And I don't know when he will say it again, but I don't think if. I think when. He said it once, he will put it away for awhile and wait for the perfect moment to bring it back out, perhaps for good next time. Through all the times that my Joy for my son was stolen from me, from us...it is through Bradley himself that Joy returns in a rush. We have only to watch and listen so we don't ever miss it. My heart is full and I am truly Blessed.
Monday, October 5, 2015
Recipes and perfectionists!
You know you're kids are each going to try to find their way, and most likely we are talking about each looking in an entirely different direction and trying to go there, NOW! What's interesting for me is watching them trying to grow between kid and teen. Madison is really in the midst of this, but Sydney is not far behind.
For Sydney, the problem is that she has huge plans and has determined that she needs to be doing that now. Trying to get her to stay and the here and now is the plan of the day. If we can keep her in the now, though planning for tomorrow...then we might be able to ease some of her anxiety. And the hard part for Sydney...she panics at a B in school....and I have to actually tell her a B is okay. Who has to do that? Who has to tell their kid to aim lower? I mean I don't tell her to aim lower...I just tell her that she has to do her best and then let it go. It will be what it will be, and if she is unhappy with the result that she and I or her and Dad can spend some time studying what she didn't understand so she can be happier with her next result. Good Grief!
As for Madison...she makes me laugh and shake my head at the same time. She wants to cook some for the family. I think "Great!" Have at it. The problem with Madison is that she is a lot like her mom and wants to use a recipe...great, I got plenty. Yeah...only some time ago, at one of those wretched Book Fairs at school, one of her parents (And I don't even know which one of us to blame) purchased a Disney cookbook to use with the kids while they were small. You know, during Kindergarten and first grade...only she holds onto it like it is truly the Holy Grail. And if she is going to cook for us... it is coming out of that book! And there are serious consequences if the end result doesn't match the picture in her book because she truly is that much of a perfectionist. So Dad and Sydney had to get over the fact that their French Toast had powdered sugar on it yesterday morning...butter is truly over-rated anyway. Her need for perfection is probably best cured by cooking...she needs to know that not everything is going to look perfect, but will taste fantastic anyway. Turn that into a life lesson for both of them and we might just start making some progress in this house!
With the Holidays approaching, the girls both have huge plans for their cooking and baking. There are quite a few recipes Madison wants to use from her book, and Sydney is willing to use the recipes I always use...if she is willing then Madison is likely to follow along. Who knows, maybe Madison has to complete the whole cookbook before she can let that go and move on to her next one. Although, I am happy to report that she has been eyeing my tried and true Betty Crocker cookbook too. :-)
As for me...I told them to have it...somehow their energy will rub off on me! And though I know this will be painful, it will only do me good to be in the fitness center every day in order to combat their goodies and my waistline! Besides, they're kids...they can eat their weight in their own goodies and burn it off with three minutes of thinking! ;-) Pretty much a win-win situation! As for their brother? He is going to be in the middle of all of it, cutting out cookies, sprinkling everything in his path and doing his part of eating all that mom will allow. Loud and messy...and delightful! Sounds like this could quite possibly be the best Holiday season ever! ;-)
Have a great Monday!
For Sydney, the problem is that she has huge plans and has determined that she needs to be doing that now. Trying to get her to stay and the here and now is the plan of the day. If we can keep her in the now, though planning for tomorrow...then we might be able to ease some of her anxiety. And the hard part for Sydney...she panics at a B in school....and I have to actually tell her a B is okay. Who has to do that? Who has to tell their kid to aim lower? I mean I don't tell her to aim lower...I just tell her that she has to do her best and then let it go. It will be what it will be, and if she is unhappy with the result that she and I or her and Dad can spend some time studying what she didn't understand so she can be happier with her next result. Good Grief!
As for Madison...she makes me laugh and shake my head at the same time. She wants to cook some for the family. I think "Great!" Have at it. The problem with Madison is that she is a lot like her mom and wants to use a recipe...great, I got plenty. Yeah...only some time ago, at one of those wretched Book Fairs at school, one of her parents (And I don't even know which one of us to blame) purchased a Disney cookbook to use with the kids while they were small. You know, during Kindergarten and first grade...only she holds onto it like it is truly the Holy Grail. And if she is going to cook for us... it is coming out of that book! And there are serious consequences if the end result doesn't match the picture in her book because she truly is that much of a perfectionist. So Dad and Sydney had to get over the fact that their French Toast had powdered sugar on it yesterday morning...butter is truly over-rated anyway. Her need for perfection is probably best cured by cooking...she needs to know that not everything is going to look perfect, but will taste fantastic anyway. Turn that into a life lesson for both of them and we might just start making some progress in this house!
With the Holidays approaching, the girls both have huge plans for their cooking and baking. There are quite a few recipes Madison wants to use from her book, and Sydney is willing to use the recipes I always use...if she is willing then Madison is likely to follow along. Who knows, maybe Madison has to complete the whole cookbook before she can let that go and move on to her next one. Although, I am happy to report that she has been eyeing my tried and true Betty Crocker cookbook too. :-)
As for me...I told them to have it...somehow their energy will rub off on me! And though I know this will be painful, it will only do me good to be in the fitness center every day in order to combat their goodies and my waistline! Besides, they're kids...they can eat their weight in their own goodies and burn it off with three minutes of thinking! ;-) Pretty much a win-win situation! As for their brother? He is going to be in the middle of all of it, cutting out cookies, sprinkling everything in his path and doing his part of eating all that mom will allow. Loud and messy...and delightful! Sounds like this could quite possibly be the best Holiday season ever! ;-)
Have a great Monday!
Sunday, October 4, 2015
Uncertain Tomorrows
The world changes faster than anyone is ready for, even when you think you are, you rarely are anywhere near. I thought that if we made plans and stuck to them then we would have the kind of life that led to stability with the house for the kids to grow up in and always come back to as home. We thought we had that when we bought our house in Hemet, CA. We could not have been more wrong. At some point you have to start asking yourself, what did we do so wrong? How did life work out where the Navy Police job that Eric loved, he promoted out of, and then out of the Navy, and now he just can't get back in to the police work he loves.
Let's face it, the Navy was the brotherhood, the home and the unity that means you have a place amongst brothers and sisters. Police and Fire feel the same kind of brotherhood, and sisterhood. A place you belong, a place where people care about you and call you family. Retiring from the Navy ended that whole unity, that connection. At times that can leave you feeling bereft, lost. In the grand scheme of things it is both sweet and pathetic that we found our place in Japan for just a little while. But the saddest part was that we thought that we had bigger dreams to chase once he retired, we thought that there would be another place, another group of unity and home, a place to belong.
And yet for some reason, that's not the life meant for us. Dreams for the police department were lost in Pre-orientation (before he could be an actual employee) when his leg buckled and he went down hard. As life would have it, the kids were in the perfect place and the adults were left adrift and lost in a really tough and unsustainable position. So we had to return to a previous position which provided the family a chance to recover, get back in one place and create some peace. Too bad Dad is miserable in his job. Sigh... To make it worse, of course there are some heart issues for Eric again. Thursday he goes to the Heart Catheter lab and we take a look inside to see if there is a blockage, or if he has electrical issues...is there something that can be fixed right then, or are we off to a Specialist and whatever comes next? Life is a big question mark right now.
New dreams have to be worked on and planned, old dreams have to be gently put to rest and filed away. And that is the hardest thing to do, letting go and moving on...so much tougher than we thought, such a painful process and even more painful realization. But that's where we are, and this is where we are making our life for now...hoping to find a turn in the road that will lead to a better tomorrow, for now we just aren't sure. We are back to the plan we created when we first had Bradley and the world became so uncertain...one day at a time, no big attempt to create big plans on the off chance we have to cancel, but truly excited when the moments arise that let us pull off a last minute coup and do something fun for all of us. Yes, sometimes that does happen.
Why do we Facebook? Because our family - blood and love, are all over the world. We have only to have the courage to reach out and let them know that we are in need of prayers and love and we get an outpouring of both from all of them. Maybe we don't have the physical unity that would be great for Eric to go to work with everyday, but we do have the Unity of these people that reach through the Internet to be there for us whenever we need it. For the most part we have very trusted support to be with the girls or watch Bradley...in fact, we are very Blessed to have these kind souls that step up when we are truly in need and have no other options. Then we wait for that one moment of opportunity to provide any kind of support back, anything we can do to let them know we are as much here for them as they have been for us... Just sucks that we are the more needy in these relationships.
On the darkest days, in the saddest moments, the scariest times...our brothers and sisters - our families from all over...they sit with us in spirit. Sometimes I forget this and try to keep going on just my own tattered Faith, and then October rolls around. And every October, those who love us and Bradley the most reach out to us and remind us of all the love he brings into our lives, and all the joy he carries around him. And then it buoys us and we keep putting one foot in front of the other and our Faith feels stronger.
We've got a long week ahead. Hope yours is great!
Sharing Awareness until we create Acceptance! 31 for 21... because Bradley matters!
Let's face it, the Navy was the brotherhood, the home and the unity that means you have a place amongst brothers and sisters. Police and Fire feel the same kind of brotherhood, and sisterhood. A place you belong, a place where people care about you and call you family. Retiring from the Navy ended that whole unity, that connection. At times that can leave you feeling bereft, lost. In the grand scheme of things it is both sweet and pathetic that we found our place in Japan for just a little while. But the saddest part was that we thought that we had bigger dreams to chase once he retired, we thought that there would be another place, another group of unity and home, a place to belong.
And yet for some reason, that's not the life meant for us. Dreams for the police department were lost in Pre-orientation (before he could be an actual employee) when his leg buckled and he went down hard. As life would have it, the kids were in the perfect place and the adults were left adrift and lost in a really tough and unsustainable position. So we had to return to a previous position which provided the family a chance to recover, get back in one place and create some peace. Too bad Dad is miserable in his job. Sigh... To make it worse, of course there are some heart issues for Eric again. Thursday he goes to the Heart Catheter lab and we take a look inside to see if there is a blockage, or if he has electrical issues...is there something that can be fixed right then, or are we off to a Specialist and whatever comes next? Life is a big question mark right now.
New dreams have to be worked on and planned, old dreams have to be gently put to rest and filed away. And that is the hardest thing to do, letting go and moving on...so much tougher than we thought, such a painful process and even more painful realization. But that's where we are, and this is where we are making our life for now...hoping to find a turn in the road that will lead to a better tomorrow, for now we just aren't sure. We are back to the plan we created when we first had Bradley and the world became so uncertain...one day at a time, no big attempt to create big plans on the off chance we have to cancel, but truly excited when the moments arise that let us pull off a last minute coup and do something fun for all of us. Yes, sometimes that does happen.
Why do we Facebook? Because our family - blood and love, are all over the world. We have only to have the courage to reach out and let them know that we are in need of prayers and love and we get an outpouring of both from all of them. Maybe we don't have the physical unity that would be great for Eric to go to work with everyday, but we do have the Unity of these people that reach through the Internet to be there for us whenever we need it. For the most part we have very trusted support to be with the girls or watch Bradley...in fact, we are very Blessed to have these kind souls that step up when we are truly in need and have no other options. Then we wait for that one moment of opportunity to provide any kind of support back, anything we can do to let them know we are as much here for them as they have been for us... Just sucks that we are the more needy in these relationships.
On the darkest days, in the saddest moments, the scariest times...our brothers and sisters - our families from all over...they sit with us in spirit. Sometimes I forget this and try to keep going on just my own tattered Faith, and then October rolls around. And every October, those who love us and Bradley the most reach out to us and remind us of all the love he brings into our lives, and all the joy he carries around him. And then it buoys us and we keep putting one foot in front of the other and our Faith feels stronger.
We've got a long week ahead. Hope yours is great!
Sharing Awareness until we create Acceptance! 31 for 21... because Bradley matters!
Saturday, October 3, 2015
Biting My Own Tongue!
October 3rd...and boy am I tired!
There are reasons that I go quiet sometimes...usually during a time when we are enjoying some exceptionally good health from Bradley. Why? Seems weird I know, why not boast the good stuff why save it for the rougher days? Here's why...
Doctors, therapies say all kinds of stupid things to us... "Don't worry he can handle this." "Don't worry, all the kids can handle this medication, this formula, this...whatever..." And always, always he proves them wrong. If they say he can, he doesn't. If they say he can't, he will.
If they say it is probably nothing...I know when to start to worry.
He matched his shapes at school...had a fantastic day. Fell asleep on the way home from school and within a minute of laying him down at home he woke up choking, retching...then vomitting...twenty long minutes watching him try to clear, watching him rear back and the pain in his eyes staring into mine begging me to make it stop. Immediately, the coughing began...the heavy wet cough that is the worse sound I can hear. Nebulizer treatments... and God he loves those (enter sarcasm font!) A day that started at 11pm on Thursday night and didn't end until 10:30 Friday night.
He was gagging/retching and vomitting at 2:00 and the fever started at 2:30... By four I was giving him anti-nausea meds and wishing I could give him Motrin for his fever. But he just had tubes put in on the 22nd...so guess who can't have Motrin for two weeks after surgery? Yes, fabulous timing!
Got the girls to school and Bradley to the pediatrician who sent us for a chest x-ray. Can't always see Aspiration Pneumonia on the first day, the x-ray showed a little bit. We determined we didn't need to give this time but to agressively beat this out. So antibiotics for Pneumonia and more Nebulizer treatments...did you hear him just shout YEAH? Yeah, me neither.
I just said he was doing great and healthy and now here we are, I jinxed him this time...I can't even blame the docs for this. Sucks! But what I do blame them for is his Gastro doc saying he thinks Bradley caught a bug, that we shouldn't address the fears that the Nissen is slipping or unraveling. And before you think I'm trying to borrow trouble...When I relayed to Bradley's pediatrician what the Gastro doc said... Eric and I got THAT look... That quiet little "Huh..." Followed by, "It's good you're seeing him on Tuesday." I could only nod. He then asked me what time, so I told him... "Call me when you're done." So serious, that I said, "Maybe you should call him?" And he gives me his grin, the one that comes after years of knowing each other and working together to save this little boy and keep these kids healthy...that grin as he says to me, "I just might."
So the little guy is fighting again, but we are battling with time on our side having jumped all over this pneumonia thing before it can get worse...and this is quite bad enough thanks. We have worried about his wrap all throughout this year, well...it's always a worry, but this year has had a lot more retching and vomitting. That is the scariest part, the only time he's done that was when he had a Hiatal Hernia...it's hard to wrap your mind around the theory that he might be able to do that now without it causing horrible consequences. Right now, we take care of the pneumonia, we help him rest as much as we can and sleep when he sleeps. Except yesterday...every time I turned around, his head was on my shoulder and he was asleep. On the way to the doc, at the doc's office, on the way to X-ray, waiting for x-ray, after X-ray, back to doc, all the way home (I wish I was exaggerating)! And then at home...wide awake....until we went to get the girls... Yep...right back to sleep! At bedtime, I kept nodding off during his books, I think I read the same pages a couple of times before I finally got through them; luckily Bradley didn't notice and finally went to sleep!
Then I slept when he slept, and at 6:00am, he walked out of his room, I put him in bed with us. Surprisingly, I was the one he cuddled with for another hour...I guess some habits happen fast. :-). The only positive to him being sick was snuggling my son all day long! I certainly love that kid, I'll take all the loving from him I can get!
There are reasons that I go quiet sometimes...usually during a time when we are enjoying some exceptionally good health from Bradley. Why? Seems weird I know, why not boast the good stuff why save it for the rougher days? Here's why...
Doctors, therapies say all kinds of stupid things to us... "Don't worry he can handle this." "Don't worry, all the kids can handle this medication, this formula, this...whatever..." And always, always he proves them wrong. If they say he can, he doesn't. If they say he can't, he will.
If they say it is probably nothing...I know when to start to worry.
He matched his shapes at school...had a fantastic day. Fell asleep on the way home from school and within a minute of laying him down at home he woke up choking, retching...then vomitting...twenty long minutes watching him try to clear, watching him rear back and the pain in his eyes staring into mine begging me to make it stop. Immediately, the coughing began...the heavy wet cough that is the worse sound I can hear. Nebulizer treatments... and God he loves those (enter sarcasm font!) A day that started at 11pm on Thursday night and didn't end until 10:30 Friday night.
He was gagging/retching and vomitting at 2:00 and the fever started at 2:30... By four I was giving him anti-nausea meds and wishing I could give him Motrin for his fever. But he just had tubes put in on the 22nd...so guess who can't have Motrin for two weeks after surgery? Yes, fabulous timing!
Got the girls to school and Bradley to the pediatrician who sent us for a chest x-ray. Can't always see Aspiration Pneumonia on the first day, the x-ray showed a little bit. We determined we didn't need to give this time but to agressively beat this out. So antibiotics for Pneumonia and more Nebulizer treatments...did you hear him just shout YEAH? Yeah, me neither.
I just said he was doing great and healthy and now here we are, I jinxed him this time...I can't even blame the docs for this. Sucks! But what I do blame them for is his Gastro doc saying he thinks Bradley caught a bug, that we shouldn't address the fears that the Nissen is slipping or unraveling. And before you think I'm trying to borrow trouble...When I relayed to Bradley's pediatrician what the Gastro doc said... Eric and I got THAT look... That quiet little "Huh..." Followed by, "It's good you're seeing him on Tuesday." I could only nod. He then asked me what time, so I told him... "Call me when you're done." So serious, that I said, "Maybe you should call him?" And he gives me his grin, the one that comes after years of knowing each other and working together to save this little boy and keep these kids healthy...that grin as he says to me, "I just might."
So the little guy is fighting again, but we are battling with time on our side having jumped all over this pneumonia thing before it can get worse...and this is quite bad enough thanks. We have worried about his wrap all throughout this year, well...it's always a worry, but this year has had a lot more retching and vomitting. That is the scariest part, the only time he's done that was when he had a Hiatal Hernia...it's hard to wrap your mind around the theory that he might be able to do that now without it causing horrible consequences. Right now, we take care of the pneumonia, we help him rest as much as we can and sleep when he sleeps. Except yesterday...every time I turned around, his head was on my shoulder and he was asleep. On the way to the doc, at the doc's office, on the way to X-ray, waiting for x-ray, after X-ray, back to doc, all the way home (I wish I was exaggerating)! And then at home...wide awake....until we went to get the girls... Yep...right back to sleep! At bedtime, I kept nodding off during his books, I think I read the same pages a couple of times before I finally got through them; luckily Bradley didn't notice and finally went to sleep!
Then I slept when he slept, and at 6:00am, he walked out of his room, I put him in bed with us. Surprisingly, I was the one he cuddled with for another hour...I guess some habits happen fast. :-). The only positive to him being sick was snuggling my son all day long! I certainly love that kid, I'll take all the loving from him I can get!
Friday, October 2, 2015
To include or not to Include?
October is Down Syndrome Awareness Month!!! 31 Blogs for 21! Let the Journey Continue!
There is always the wonder about Inclusion. Will Bradley ever be included in other classes...would he be able to take part in a General Ed classroom and be successful? And by successful, I'm not laying a lot of hope in him passing Calculus...I didn't take Calculus and barely passed Trigonometry. So no big huge fantasies here. Once the girls hit Trig, I might be better now because I did get better in College, but I think I will have to hire a tutor - I got virtually nothing.
Anyway, as Bradley's mom I try really hard to keep up with the research, to know what is going on out there, to be mindful of all the advice given and temper what I know and what I learn with what Bradley needs and what is most helpful for him. At the same time, I try hard to turn off that instinct to feel like I am not doing enough or that perhaps he isn't where he should be because all these other kids are "fully included" in their grades. For the most part I think "good for them." For the rest, I think: don't judge those of us walking a slightly different path. Health has been Bradley's stumbling block. Verbal has been his stumbling block.
When all these wonderful (enter sarcasm font here) assessments happen it is never with the intent to say all he can do, it is always with the intent of all he cannot do. What he cannot do are the areas that therapies and extra helps come in. I know this in my heart and I get this in my head...but there is always a part of my brain that balks at the labeling that puts him somewhere near toddler in age because he cannot talk to you with his mouth. He knows what you are saying and he can use his signs and understands yours...because you cannot sign back does not mean that he is not communicating...and yet he gets a low developmental age score because of it. Rebellion and revolt are what come to mind, but humility and acceptance are what win. Patience...which is not a close friend of mine, is trying to sit beside me and guide me through all this. Letting Bradley grow into school is the only option I can see at the moment, I want him to have independence and quality of life, that can't happen if he never leaves the Special Ed class. Will he have a horrible life if he doesn't leave? No, or at least I don't think so. I think just smaller, and I think he'll let me know if that's the life he wants; but he has to know how to live amongst others that are not as genetically enhanced as he is. ;-)
And I'm not going to lie and say I know he can succeed in a regular Kindergarten classroom, the answer is I just don't know. But here's the thing about all this...it kind of feels like all or nothing. You either have total Faith your kid can do it and go for it...or you aren't so sure and have to slowly get there. Very few teachers are stepping forward and saying: "You want inclusion? Bring him in, let's help him find his way here." Too much work. Sure, lots of teachers love having disabled kids for the lessons it teaches their class...but a lot, just shuffle them to the side and no meaningful inclusion actually happens. If his time is meaningful, then I am want him there...but if it's so the teacher and school feels better because they are so great with disabled kids and so in touch...yeah, not so much.
Believe it or not, my son has a whole bunch to teach you. The question is, who wants to reach out and take a lesson? The bigger question is this: How do I know that he is ready and capable to take on this very frightening world of Inclusion? I want the world for him, I want everything wonderful that he can achieve in his world...huh, I want the same greatness for him that I want for his sisters. Do I expect him to fly across the Milky Way with Sydney, or Be the Lawyer, or Doctor or Pre-School Teacher or whatever Madison decides on? No, each kid has their own path, and if I am lucky two out of three will be home for the Holidays...(let's face it, Sydney has the potential for a really long commute) I have to be realistic. ;-)
As much as Bradley is a day by day journey; trying to keep the girls grounded in today while helping them dream and plan for tomorrow, is proving just as difficult. Life gets interesting when you have told your kids that no dream is too far if you work hard enough. Life gets more interesting when they start to believe you. So Bradley dear heart, it's time you start believing just like your sisters: No dream is too far if you work hard enough, because I believe in you too. We'll jump into the General swarm when Dad and I know you're ready and you'll start swimming and continue growing. Always, you'll continue to just be who you are meant to be.
That being said, if my Holiday numbers just dropped by one more I am not going to be happy!
There is always the wonder about Inclusion. Will Bradley ever be included in other classes...would he be able to take part in a General Ed classroom and be successful? And by successful, I'm not laying a lot of hope in him passing Calculus...I didn't take Calculus and barely passed Trigonometry. So no big huge fantasies here. Once the girls hit Trig, I might be better now because I did get better in College, but I think I will have to hire a tutor - I got virtually nothing.
Anyway, as Bradley's mom I try really hard to keep up with the research, to know what is going on out there, to be mindful of all the advice given and temper what I know and what I learn with what Bradley needs and what is most helpful for him. At the same time, I try hard to turn off that instinct to feel like I am not doing enough or that perhaps he isn't where he should be because all these other kids are "fully included" in their grades. For the most part I think "good for them." For the rest, I think: don't judge those of us walking a slightly different path. Health has been Bradley's stumbling block. Verbal has been his stumbling block.
When all these wonderful (enter sarcasm font here) assessments happen it is never with the intent to say all he can do, it is always with the intent of all he cannot do. What he cannot do are the areas that therapies and extra helps come in. I know this in my heart and I get this in my head...but there is always a part of my brain that balks at the labeling that puts him somewhere near toddler in age because he cannot talk to you with his mouth. He knows what you are saying and he can use his signs and understands yours...because you cannot sign back does not mean that he is not communicating...and yet he gets a low developmental age score because of it. Rebellion and revolt are what come to mind, but humility and acceptance are what win. Patience...which is not a close friend of mine, is trying to sit beside me and guide me through all this. Letting Bradley grow into school is the only option I can see at the moment, I want him to have independence and quality of life, that can't happen if he never leaves the Special Ed class. Will he have a horrible life if he doesn't leave? No, or at least I don't think so. I think just smaller, and I think he'll let me know if that's the life he wants; but he has to know how to live amongst others that are not as genetically enhanced as he is. ;-)
And I'm not going to lie and say I know he can succeed in a regular Kindergarten classroom, the answer is I just don't know. But here's the thing about all this...it kind of feels like all or nothing. You either have total Faith your kid can do it and go for it...or you aren't so sure and have to slowly get there. Very few teachers are stepping forward and saying: "You want inclusion? Bring him in, let's help him find his way here." Too much work. Sure, lots of teachers love having disabled kids for the lessons it teaches their class...but a lot, just shuffle them to the side and no meaningful inclusion actually happens. If his time is meaningful, then I am want him there...but if it's so the teacher and school feels better because they are so great with disabled kids and so in touch...yeah, not so much.
Believe it or not, my son has a whole bunch to teach you. The question is, who wants to reach out and take a lesson? The bigger question is this: How do I know that he is ready and capable to take on this very frightening world of Inclusion? I want the world for him, I want everything wonderful that he can achieve in his world...huh, I want the same greatness for him that I want for his sisters. Do I expect him to fly across the Milky Way with Sydney, or Be the Lawyer, or Doctor or Pre-School Teacher or whatever Madison decides on? No, each kid has their own path, and if I am lucky two out of three will be home for the Holidays...(let's face it, Sydney has the potential for a really long commute) I have to be realistic. ;-)
As much as Bradley is a day by day journey; trying to keep the girls grounded in today while helping them dream and plan for tomorrow, is proving just as difficult. Life gets interesting when you have told your kids that no dream is too far if you work hard enough. Life gets more interesting when they start to believe you. So Bradley dear heart, it's time you start believing just like your sisters: No dream is too far if you work hard enough, because I believe in you too. We'll jump into the General swarm when Dad and I know you're ready and you'll start swimming and continue growing. Always, you'll continue to just be who you are meant to be.
That being said, if my Holiday numbers just dropped by one more I am not going to be happy!
Thursday, October 1, 2015
October 1, 2015! Let loose the Blogs of War?
October is Down Syndrome Awareness Month!! 31 Blogs for 21! Let the Journey Continue!
Did October just sneak up on anyone other than me? I would have bet money that the kids just started school, so October already being here was a bit of a shock as it dawned on me not less than ten minutes ago. Yikes.
Usually I take a vote a few days before October to see if anyone but my husband is on board with me blogging for 31 days straight...not this year... this year we are all in! Like it or not, here we go! :-)
Last October was a really rough month for the family. We were displaced, Eric was out of work, our living arrangements were difficult and yet our kids were all starting to bloom in huge ways with the different schools they were at. Last October, Bradley was on the brink of being in a classroom, sort of one foot in and one foot out. He was going into class after the other kids went home, sort of catching the tail end of their germs to test the strength of his immune system to consider being in class with them all the time. He was having ear trouble, so we were having some truly incredible behavior problems at home. His pain tolerance was at an end and that led to biting and hitting and uncontrollable outbursts, it also introduced a whole new trait...teeth grinding. That kid has ground his teeth for a year now. Eric says it's like having a "Predator" in the house, and though I don't like it, I have to admit to some over the shoulder glances looking for tree limbs when Bradley gets really going. Turns out the tube in Bradley's ear (left or right don't remember) had come out, and instead of dropping into the canal or coming out completely, the tube instead lodged against the ear drum. No one should ever experience that kind of pain, but our guy did. It is quite difficult when you are giving your son a heavy narcotic to fight the pain until surgery date...yep...good times indeed!
Skip ahead! This October, we are BACK in Camarillo. We are in an apartment with AC, so the kids have had a much better summer. Considering that both Sydney and Bradley have allergies...the AC has kept the humidity level down to help them both breathe better...all in all, a win win! Bradley is in school everyday, and getting used to a longer day. He even did extended summer school which was two hours shorter each day but he still managed to nap through quite a few of those. But then, summer was a mix of ear infections (so bad that each ear successfully pushed out first one tube and then the other) and another seizure. A new set of tubes last Tuesday the 22nd, and he already seems to be feeling better. Allergy meds have reduced a lot of mucus, which has slowed some of those choking episodes. We still get some, and they seem to last longer, but not as many as we did.
We are feeling a little more optimistic about his health these days. This is a great thing, but it takes a pretty hefty blow when he does get sick. We get comfortable in the better days, we want to make them last for ever...but sometimes, a less than better day hits and it is a bit shocking to see how sick he gets and how fast. But those days are par for the course, ours is not a Birdie game, but more a Bogie (or in my case a Double Bogie) game...but the course is beautiful and my team is amazing and it's just always a Blessing to have this family.
Spread Awareness and together we can Create Acceptance! Have a great first Day of October!
Did October just sneak up on anyone other than me? I would have bet money that the kids just started school, so October already being here was a bit of a shock as it dawned on me not less than ten minutes ago. Yikes.
Usually I take a vote a few days before October to see if anyone but my husband is on board with me blogging for 31 days straight...not this year... this year we are all in! Like it or not, here we go! :-)
Last October was a really rough month for the family. We were displaced, Eric was out of work, our living arrangements were difficult and yet our kids were all starting to bloom in huge ways with the different schools they were at. Last October, Bradley was on the brink of being in a classroom, sort of one foot in and one foot out. He was going into class after the other kids went home, sort of catching the tail end of their germs to test the strength of his immune system to consider being in class with them all the time. He was having ear trouble, so we were having some truly incredible behavior problems at home. His pain tolerance was at an end and that led to biting and hitting and uncontrollable outbursts, it also introduced a whole new trait...teeth grinding. That kid has ground his teeth for a year now. Eric says it's like having a "Predator" in the house, and though I don't like it, I have to admit to some over the shoulder glances looking for tree limbs when Bradley gets really going. Turns out the tube in Bradley's ear (left or right don't remember) had come out, and instead of dropping into the canal or coming out completely, the tube instead lodged against the ear drum. No one should ever experience that kind of pain, but our guy did. It is quite difficult when you are giving your son a heavy narcotic to fight the pain until surgery date...yep...good times indeed!
Skip ahead! This October, we are BACK in Camarillo. We are in an apartment with AC, so the kids have had a much better summer. Considering that both Sydney and Bradley have allergies...the AC has kept the humidity level down to help them both breathe better...all in all, a win win! Bradley is in school everyday, and getting used to a longer day. He even did extended summer school which was two hours shorter each day but he still managed to nap through quite a few of those. But then, summer was a mix of ear infections (so bad that each ear successfully pushed out first one tube and then the other) and another seizure. A new set of tubes last Tuesday the 22nd, and he already seems to be feeling better. Allergy meds have reduced a lot of mucus, which has slowed some of those choking episodes. We still get some, and they seem to last longer, but not as many as we did.
We are feeling a little more optimistic about his health these days. This is a great thing, but it takes a pretty hefty blow when he does get sick. We get comfortable in the better days, we want to make them last for ever...but sometimes, a less than better day hits and it is a bit shocking to see how sick he gets and how fast. But those days are par for the course, ours is not a Birdie game, but more a Bogie (or in my case a Double Bogie) game...but the course is beautiful and my team is amazing and it's just always a Blessing to have this family.
Spread Awareness and together we can Create Acceptance! Have a great first Day of October!
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