And the World Slipped Away....

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.

Exciting News for the Teenager!

Thirteen years ago, in the middle of a late blooming of Cherry Blossoms (Sakura) in Yokosuka Japan, we brought home a 7 pound 8 ounce baby girl.  She arrived in a flurry of pink and immediately wrapped both her parents around her tiny, perfect finger.  Dad especially fell victim to this little pint sized doll baby and though we had kind of hoped for a boy, we were okay with this little girl we had.  As she grew, she was all pink tights and leotards, a ballerina to the core with all the grace and skill that would carry her quite a ways to keep up with the big girls when given an opportunity.  She danced with the kind of passion and joy that she gives her life, there was no wondering if Madison loved what she was doing, she glowed with it.  Did I lament that I had a girlie girl and not a tomboy more like me?  No.  Well maybe a little, but only because I wasn’t sure what to do with all that pink, all this girl… but after Sydney came along two years and four months after Madison – it was obvious that I better start learning.  Don’t get me wrong, I had tea parties when I was little, and I had Barbie, but I also had two older brothers and no one else to play with.  So I was pretty good at football and once my brother received a “Guns of Navarone” playset…Barbie became “Barb” in Camo and took that hill over and over again complete with knives and guns she swiped from GI Joe while he was sleeping.  But those are stories for another day…

So we had these two dancing little girls…but we still had this tomboy mom, and as luck would have it…Madison’s ability to dance just meant she also has a natural ability for movement, and she soon was tearing up the field playing football, and then the courts with Basketball and then Volleyball, finally.  Hurray, something I knew how to teach her.  Somewhere in there a really talented artist emerged, and writer, but surprising to me was the mathematician and scientist that are in there too.  How can she be so unlike me?  She has my eyes, my love for Volleyball and she has double my brain.  She loves Math and Science more than she does writing and reading, but she loves both of those in pretty good measure too.  She’s a pretty all around intelligent kid and we truly believe that common sense will surely follow in the path, eventually. 

Back at the beginning of the year sometime, Madison’s Math teacher saw something special in her and nominated her for a special summer camp at UCSD.  The nomination was the easy part, after that Madison had to complete an application and write an essay in order to be considered.  From there, she pushed forward to an Interview process.  It was odd sitting there and watching her talk her way through questions and try to express who she is and what she is about to two complete strangers.  I felt like she was six years old again and being interviewed by Japanese Producers who were considering her for television commercials or magazine ads.  I would sit quietly, letting her fumble with grace through the rigors of selling herself to them.  I did the same in these interviews.  When she got too far away from talking about herself, they brought her back to talking about her and not the greatness of another friend.  After the interview we had to broach the potential of a move, would she be considered?  Turns out they were willing to consider her if we were willing to bring her to San Diego if she were to be chosen.  I told them of course, but expected that she wouldn’t be considered because of the move.  Turns out they saw something pretty special in my daughter.

The day before Easter, she received a letter of Congratulations that she had been chosen.  She cried.  And her utter joy touched my heart; I had no idea to what depth she had wanted this so badly.  Something that I felt she thought would be fun was something she had been truly hoping for, recognizing this in that moment as I held her; I had a few misty tears myself.  But then we knew I was a big mushy baby anyway.  So come summer, my kiddo is spending a week in the dorm at UCSD, learning and absorbing a world of math and science as taught by other incredibly gifted, intelligent and successful women in the world of STEM.  An opportunity to take part in a camp designed for seventh grade girls that encourage them to pursue futures in STEM: Science, Technology, Engineering and Math.  And my daughter is so excited she wants to start packing right now.  It’s a world I know very little about, but one that both my daughters might spend their lives in…and I couldn’t be prouder.  So yet again, I have some learning to do so I can make sure that come Holiday dinners I can understand and maybe say at least one intelligent thing back.  Or… I’ll throw pumpkin pie on the menu, then no one talks all that much anyway.  ;-) 

So we spent Saturday in traffic traveling hours back and forth from San Diego, and though the traffic sucked and we were exhausted at the end of the day and honestly, into Sunday, it was so worth the trip.   She managed to contain her seat, barely, and when they took the group picture, my little pale haired sunshine glowed from the middle of the group.  And as Eric leaned over and whispered in my ear: “You realize she’s going to come home from this camp completely different.” I had to pause as I thought about it.  He’s mostly right, she will.   She will be older and more mature, but if she truly loves any of these potential topics, her world will rotate to a passionate pursuit that will be deterred by no one the moment she decides to put the full force of her will towards it.  And that alone will be something to behold.  

Congratulations Kiddo!  Your mom and dad are so proud of you!  And we promise, we will extract your envious little sister from your suitcase as soon as we drop you off at your dorm room! 

Returning

I was about to say that the Canadian Geese were back, but I guess maybe I should just say that we are back.  The Geese remain in the same rhythm they have always been in since we first saw them in the field of the Middle School when we moved here in 2011.  Then we noted the late arrivals of a small group, not so completely different from our own small group, battered and ill, but staunchly sticking together.  Since then the little family has grown, but we have not.  We have only aged.  I want to think we might be getting wiser, but somehow I think we are still muddling along as best we can for as long as we can. 

Our ragtag little group is back and a wee bit stronger in some areas and much weaker in others.  I am the weak link this time.  I am the one trying to figure out how to piece together the last year into some semblance of order that will result in an outcome that is positive and inspiring.  I am the one trying to make heads and tails of how to show that the magnificence of where we were will somehow be outshone by where we are now.  I am failing.  Yesterday, Eric took our ten year old back to San Diego to take part in a field trip that her class had prepared for and had been planned to happen before we moved, but was canceled and moved to yesterday.  We didn’t have the heart to say No to it.  Say No to the kids that are missing her, the teacher that knows the world is a better place because she is going to be in it, the Principal that sees her potential and asked the Superintendent if she could come along.  And we knew all those people were nothing in comparison to saying No to our girl.  As she bravely smiles and walks into a new school that is excellent but so big they lack the feeling of family, and sits through the lessons from a teacher that knows everything to the point that she has no need for input from a previous teacher…she bravely sets aside the loss of her best friends…the ones that were finally THE best friends…I couldn’t tell her No to this day, this return.  And her classmates didn’t disappoint.  They mobbed her upon sight, and when told to sit for instructions, they made a circle around her.  My little nucleus.  She responded in her usual fashion, bright like the sun, embracing the moment as only she can.  Holding it in her heart and head as she settled back into the reality of this being home with school today being with the new faces that she has grown to know, the new school that lacks heart, but is not really a bad place; doing all that, without a word, merely an hour in her room buried in the adventures of a book that takes her away from all this for just a little while. 

Maybe she is not so affected by all this, perhaps I have been the one most affected.  Perhaps I am projecting my concerns and hurt for her onto her and she is great.  But there was the hour alone. There was the texting before school this morning, me asking if she was talking to her friends in San Diego, do they miss you?  And in her soft smile, that telling look in her eyes, I know I have projected nothing and that perhaps she is projecting on me.  After that one look, I knelt beside her and told her that I knew that yesterday was wonderful being back with her friends, like going home, and I know that going to school and being here now cannot replace that feeling – but if I could have my way… life would have worked out and things would be different and I would give her back all that if I could.  But I can’t fix this, I can’t change what is and I can’t make this okay for her.  All I can do is stay here beside her, helping her walk this path as best I can, and hope that with time, things that are, things here…will make it okay for her.

It’s only been five weeks, and I as I preach patience to the kids, so must I listen to myself and give this time.  Moving back here was the right thing to do, for so many reasons that have nothing to do with the kids at school.  For school alone, being there was the best thing for them.  But that was the only best thing.  Their Pediatrician was retiring and their ENT was leaving the Navy.  For Bradley alone, these were dire consequences that would leave a real area of concern and worry as we navigated a whole new world of medical help. 

It was a move we needed to make, and so just like the geese, we are a little battered but we’ve stuck together and headed north. My oldest spends her days going to the Middle School attached to the field that these geese, our geese, spend their days.  Knowing that life is meant to come full circle, that the truly important aspects that are supposed to happen and where they are meant to happen…are going to come around and place you where you are meant to be…that is a measure of Faith that we are supposed to have in place.  And we are supposed to believe in our Faith, but sometimes, when the child you love gives you THAT look, and it hits you in the heart, holding onto that Faith can be difficult.  I have to believe that there will be better things for these kids and that with all that looks grim today, we will see the light glow around the grim until the light is all that remains. 

 

 

Not What I Had Planned

I had these big plans, I had some exciting news to blog about tonight.  You know all those little things that make a day go from a so-so day to a great day!  But turns out things just never work out like I plan.

Bradley is doing awesome at school.  That's part of what I wanted to tell you.  I wanted his followers to hear that he's sitting in Circle Time occasionally, that he just buries his head till it's over sometimes, but never throws a tantrum.  He's trying the slide again at playtime, something he's been afraid to try with us lately.  He's stacking shapes in order and matching colors.  All of these things.  And today?  Yes, today he played with a little friend for the first time.  He played peek-a-boo with the same little girl that welcomed him the first day they met.  She jumped around him at the Pumpkin Patch and then on his first day of school she fluttered around him like a sweet little butterfly, drawing him in, making him feel welcome.  Today Bradley played with a friend!  Joy!!!

He's had too much drainage from his ears so we picked him up from school and went back to Balboa, we were just there yesterday, it hasn't changed much, well, any.  But today we were able to donate some Pediasure to them.  Our little boy continues to shock and amaze us with his progression with food. He still needs his Pediasure, but lots of hospital time has created an incredible stock for him, and as he eats more he settles at a need for fewer cans each day.  It's beautiful!  It's a Christmas Miracle!  It just felt great!

And then we got to ENT, and the world that was spinning so well suddenly fell off the axis and started bouncing down the street.  I wanted to grab it, but it was always out of my grasp, proving once again that in the world of Bradley's health, I am naive to believe I have any control whatsoever.  While we were waiting he seemed happy, but having just woke from his nap, still sleepy.  But then the crying started, uncontrollable, inconsolable.  He didn't return to any seizure behavior that we've seen so far, but I saw a few jerky motions and grabbed his diazapan.  His ENT doc heard Eric ask for him and he brought us into a room, helped us monitor Bradley and then supported Bradley's head while Eric got his diaper down so I could give him the medicine to stop the seizure.  It all lasted close to ten minutes, ten long life stealing minutes.  Waiting for him to come back, terrified that he won't, grateful for the moment he reaches for me to hold him, feeling him solid, real and breathing in my arms.  Feeling anything but safe, but feeling Blessed to have him in my arms again, physically and mentally.

He slept off the effects of the seizure and the medicine, using my jacket as his pillow.  Tonight he laid out patterns with the pasta cans and the water bottles.  And at dinner he ate a whole can of those spaghetti O's with meatballs and a Hawaiian roll.  Impressive to say the least!

So I'm trying to remember the things about the day that made it awesome and forget about the rest, but there is just that moment in time that engulfs me in dread and makes up my nightmares.  Nine months since his last seizure, (short by nine days) and then eighteen months since his first.  And now we're moving through day by day again.  I watch him sleep through his monitor and hold my breath as I listen for the sound of his.  It wasn't what I had planned, but it's at least a return to something I know how to do.  And for now he is sleeping well and that's enough.  It has to be.  I can see him and I can hear him through the night, so that has to be enough too.

Happy Wednesday everyone!

Final Day of the 31 For 21 Challenge!

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!

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!

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!