Take Three Cookies

I will never think of Oreos as a calorie packing cookie again.  When I choose them to eat, I ignore the calories and I take three, always three...one for each one of my own Oreos.  I think about the strength of the cookie to hold up to the packaging and fight the encroaching milk as best it can before crumbling gracefully into a delicious mess.  I think about the cream, the soft middle with the strong glue to hold it all together.  To make Sydney feel better about being the middle child I told her she was the cream in the Oreo, holding the family together; but truth be told, there are days she is as much the strong cookie as Madison is the cream...or Bradley.  The moment dictates the role of each child.  Sometimes Madison's emotional and passionate nature is the cream, sometimes it's Sydney's humor and logic, and sometimes, it's our love for Bradley that binds us all together - everything that he is and all he has been through.

I remember saying to Eric after having Sydney, "We would have been missing so much if we hadn't had her."

His response then was : "We wouldn't have known what we were missing."

But holding a newborn Sydney, I was pretty sure we would have felt like we were missing something.  I felt that maybe our kids had been placed in my heart already and it was up to me to do the best I could to bring them to light.   I was supposed to have these two girls, I was also supposed to help them be the best they could and would be in this world.  We tease the girls all the time and say: "Why did we want kids?  We used to be cool!  We gave up our freedom, sleep, our money, sleep, going away on vacation whenever we wanted...and sleep."  But here's why the girls laugh when we do this; they know why.  Deep down, they know that we really didn't become cool till we had these kids.  They know that our love for them is so deeply ingrained in us that is flows into them daily.  When I go to hug or kiss them I'll say: "Kiss me because I love you."  Or throw in hug for the same idea.  How do I know that they are feeling this love from us?  Now, Sydney comes to hug me or kiss me and will say one of two things:  "Kiss me because you love me"  or "Kiss me cause I love you Mom."   You can probably guess my favorite way.  But life felt perfect!



Okay, perfect in living in the military and all the ups and downs that come with that...and I was set with these two, I considered one more, then reconsidered, made the list and moved on...gave away the rest of the baby stuff even.  I should have known that would be the catalyst...I popped up pregnant a month later!  Two months after visiting our one and only Fertility Festival in Japan; after living there for what would be almost eight years we chose to attend a local festival as a grown-up only adventure with our neighbors, one of us ladies got a little too close to the smoke...me.  I didn't take the news well...Eric did and he was really sweet to contain his glee when not around me for awhile.  There was a lot more pressure this time.  Eric was retiring from the Navy, we would be returning to the US soon after the baby was born, I worried about how to nurse this baby as long as the girls had and still get a job...blah, blah, blah....   I worried about my age and as if God himself whispered across my heart in an attempt to prepare me, I worried about something being wrong with the baby.

A diagnostic Ultrasound told me not to worry.  A diagnosis of melanoma and ensuing surgical intervention left no room for worry about anything but that.  A non-stress test that showed I'd lost 4 mls of fluid brought the worry back though.  Lost 4mls of fluid?  To where?  How on earth did I manage to do that and not notice?  I was still coping with the news we were having a baby boy!  A boy???  I don't know how to raise a boy - I'm doing okay with girls...but a boy???  But considering Eric was over the moon about a boy, I sincerely tried not to let my concerns blurt more than half a dozen times...a day... but he was good about it.  And after the shock of Bradley's arrival and diagnosis started to wane...this is what I got: pure beauty and pure love.

I looked at Eric in the first few hours after we were told about Bradley, trying to voice my worry about loving this tiny baby that I feared we would lose any moment and all I could ask was, "What do we do?"  His answer was simple: "He's our baby, we love him."  An hour, a week, a month, years - his lifetime would be what it would be, and we would just love him.  And we would do it together, as a team.  Further research would teach us that we probably wouldn't be losing him any time soon, long term life expectancy is going up and that was our hugest concern.  Developmental and Intellectual Delays?  Yes, but everything we read told us with help and intervention he would learn everything like other kids, just not as quick.  I am not a rocket scientist..I am a reader, everything told me he could be too.  It wasn't easy, but it was our new normal and we adjusted.  Our girls were the best help for us.  They were so excited to meet their brother, and their love for him was fast and fierce; so many painful doubts started to ease away and we saw the baby beneath the diagnosis and he was beautiful.   And when I put my three all together I got this: joy!

Now three years later, the diagnosis for Bradley doesn't change.  The prognosis for him is excellent, somewhere in the reach for the stars realm.  The prognosis for this family is just as high.  There is a long road ahead and there will be more hills and mountains for us to climb, possibly crawl up - but his name was etched across my heart long before he came into this world and my job is to help him be all he can and should be.  He grows and learns something new everyday!

 In the words of the pediatrician that taught me the most:  "He will amaze you."  Truer words...because everyday he does.  A lot of posts these days will ask, "What would you tell someone who has a diagnosis or has just had a child with Down syndrome?"  I mulled the idea over for a long time, thought of a million things to say, but I think the most important thing to say is: "Be ready, your child will amaze you!" Bradley does everyday of his life.  Because a kind pediatrician took the time to say that to me, I don't miss the moments where he amazes...and I don't miss the moments when the girls do either.  Instead, I let it run through my mind  pushing the doubts away, keeping worry about his feeding and digestive troubles at bay a little at a time, and it plays like my own personal mantra: "He will amaze you!"

He does amaze me!  My kids amaze me!  To think what I would have missed out on if I hadn't said Yes to Eric, if we hadn't had Madison, and added Sydney...and let the Universe plan Bradley... somehow I think we would have always felt something missing in us without them.  So instead, now I have this: Faith.

New Challenges

There's always something with Bradley.

Last week he started signing "red" and "blue"!  It's always exciting when he starts to sign a new word, it makes me feel like there is a bigger connection just waiting to be made between us.  He's working on letting me know when he likes and doesn't like something...and he is doing that through the words his hands make not just by his giggle or his tears.  The more he tells me with his hands, the less frustration we get by banging his head or throwing himself back - though for Bradley to throw himself back there is a HUGE amount of frustration going on.  Through it all I think about how far he's come in the past year.

This week I've been stuck in the memory of his hospital stay at Cottage Hospital.  From New Year's Eve till his birthday on January 9th, Bradley was their guest.  Usually I put these things away in my memory and try not to let them come bounding forward because truth be told, these are some of the most frightening moments of my life.  As brave as you can be at the moment, it's in the memories that surround you that you feel your weaknesses and your fear the most.  But I have now learned that my subconscious pulls them up for a reason and if they have jumped into my head consistently for any period of time I need to stop and take a look at them, no matter how painful they are - for inevitably there is something important there that I have to learn.

Two days after Christmas we found a hiatal hernia that was pushing into Bradley's chest cavity and making it hard for him to eat, and breath because of the pain.  His pediatrician, hiding his superman cape with great care, had him in a  Barium x-ray within the hour and we knew we had a serious situation on our hands.  Multiple surgeons were consulted and they were all out of town, the top two: his original surgeon at Balboa in San Diego, and the really excellent one that was at Cottage Hospital.  It was a frustrating week for us, Bradley was back on the pump 24 hours a day and was honestly so miserable that he didn't care that he was stuck on my lap or in his tiny play yard.  By New Year's Eve, he was on a 24 hour feed with his drip at 24mls per hour trying to buy us time.  He cried all the time and when we vented him to relieve the pain we took upwards of 30 to 40 mls each time, till we got to about 20ml every twenty to thirty minutes.  His Peds GI doc was on the phone with us all morning, starting at 4am when Bradley started retching.  By 1:30, we were headed to Santa Barbara...they had been expecting us since 4:30 am, because even then Bradley's doc had anticipated that we were at the end of our ability to take care of him at home.  What followed was a wrenching ninety minutes of stick after stick trying to get an IV...finally hitting it on the 6th try...then the Neonatal feeding tube had to go into his nose and down to his belly, lucky for us, they got that on the first try and even got it into the correct place.  The middle of the night we started glucose, that had dropped to a dangerous level and explained his inability or desire to raise his head.

The first three days the nurses were distant and clinical...as the surgery date approached; the surgeon was coming off vacation, Bradley was a little stronger and more likely to handle surgery better...the nurses were more open, more interactive...  I think we all had a doubt in our minds.  His surgery went well, he had trouble breathing after, but Respiratory came in and helped with that.  Once he was eating again five days later they were ready to send him home...he was sent out the door after all the nurses sang him Happy Birthday, and even a couple of his doctors and surgeons stopped in to add their voices.  He was given presents and he smiled and he played a little bit.  The same nurse who started with him, ended with him and of course, had to hold him down to unwrap that incredibly secured IV and take it out.  I felt bad for her, Bradley is never a fan of the nurse who gets this duty.  Eric and I?  Huge fans, she knew what she was doing and she managed some really difficult work on Bradley.

So while this keeps haunting the back of my mind, I keep trudging along through the days with him...his therapies and his work... caring for him and the rest of the family...trying to keep up.  Trying to keep ahead of his mind and its little quirks.  One of those quirks is his inability to connect with his OT from school.  She's come four times and he still shies away from her to the point that last week, he hid his head in the corner rather than look at her.  He wouldn't even come sit in my lap during the session, as if I have let him down by allowing this really lovely lady to keep coming to our house.  She's quite good at her job, but he just can't connect with her at all.  So I was thinking maybe try once more at a different time?  But today, he met a new Speech Therapist - and he played without trouble, so again I was baffled about why he wouldn't connect with this one particular woman.  And then I thought of that hospital stay again, and I had my "Ahhh" moment. I went from feeling curious to to certain.

I'd been trying to think of who has been in charge of his care lately, any nurse that he didn't take too...none at UCLA in January...none at Cottage in October last year, none at UCLA last March.  So I let that go, that can't be the reasoning, anything else is too far back in his memory, everyone has been really good....but then I had that memory and this time I played it through, and this time I noticed the most important difference in that hospital stay and all the others since.  January 2012... he was forced to have an IV right away and he was poked and poked till they got it.  All his others he was given medicines through his g-tube to relax him, then given gas to dilate his veins.  He was then given his IV while he was in twilight sleep, and Mom and Dad didn't have to help hold him down.  He has enough memory left of the nurse that we had to help hold him down for, the one that not only stuck and stuck till pay dirt, but the one that forced a tube down his nose so he could be nourished; the one that took all the needles out again before we brought him home.  And I say he has enough, because it turns out she not only looks, but her voice sounds like the OT therapist that he can't connect with now.

Somehow, Bradley is holding onto that memory in some part of him, and he remembers her maybe not as clearly as I do...but we were both traumatized by that time - we both have a clear image of her.  Once I felt certain I was on the right track I checked with Eric, asked him if he remembered that nurse...ha, what a joke...you don't forget stuff like that no matter how hard you try...  then I asked if he remembered the new OT that he's only met twice, he did remember her because she reminded him of the same nurse.  Did he think it was possible...yes possible.  Mostly, Bradley just isn't connecting so we have to make a change whatever the reasoning happens to be.  So the call has been made and the wheels are trying to get into motion to try and find a new therapist that hopefully, Bradley will like and connect with.

Do I think that Bradley remembers this woman...not sure...I mean he was really in trouble when they met.  But sometimes those are the memories that are most ingrained for us, the ones that are during your most traumatized times.  Whether or not this is the case for Bradley, those memories are in there for both of us and for me to walk with them for a couple weeks now it tells me that ignoring a message hidden in there would be counterproductive and downright unhealthy for both of us.

We spend a lot of time listening to the kids, trying to hear what they need and making sure that we provide it...now we have to trust in what our own minds are trying to tell us as well.  A long lesson plan for me, but I think I have it now.  I can't hide from the painful memories in his past, but apparently, I can sometimes learn from them.  I have to think of them the same as removing a band-aid; do it fast so that the pain doesn't keep festering and the area can start healing again.  I just hope that works in the future! ;-)

Why is the Toy Box Empty?

Bradley’s currently on overload today.  He’s sitting next to his toy box systematically emptying it of all its contents until there will be more empty space than full and he can crawl inside it and hide away for a little while.  We recently took down his play yard and are preparing to pass it along to someone else.  You see it was overwhelming the living room and since Bradley climbs out of it at will, well it seemed more hazard to keep it around.  By practicing climbing he just gets that much closer to climbing out of the crib.  Normally this is not an issue, but a kid attached to a short tube that connects to:  what to Bradley is a very attractive, but dangerously heavy IV pole; well it makes me a little nervous.   His first instinct is to grab the pole and then his second is to smack himself in the head with it.  I can’t imagine what he’d do with it after that or if he’d even be conscious after a few attempts…so I try not to let him have too much of a chance at it.  Point is that for now, he needs to not climb so much.   Anyway, when he had the play yard and wasn’t climbing out of it, he seemed to use it as his private office, going in there when he was overwhelmed by life around him.  Now he doesn’t have the play yard, I’ve noticed that he empties the toy box and then either sits on the floor in the middle of all the toys or he empties it enough to let him climb inside.

He had three therapy sessions today, and he worked very hard for all three of them…his nap had to be cut off early to accommodate the third session, his first with his PT at the school.  I almost cancelled it because the rain is threatening and all morning long it was dismal and cold.  But for some reason, at 12:30 the sun came out and stayed out till 1:10, ten minutes after the end of his session.  He loved the playground, but was really tired afterwards.  Now it’s cold and dismal again like the rain is coming any minute now. 

We’re approaching the world campaign to spread the word to end the word, and then on the 21^st of March will be the World Down Syndrome Day.   As much as we are fighting for awareness and inclusion and so many are supporting this; there are so many others that want desperately to eradicate anyone like my son.  There are days that my heart feels heavier than others.   Sometimes life just throws up one wall after another and just when you scale one you find yourself climbing another one, and no matter how many times you climb there’s always another one in your way.  That’s the way it feels today and overhead the rain is waiting to pour on us and I’m not sure how big the deluge is going to be. 

Yeah sometimes there is too much information to be gleaned from the web.  I know that I will never live in New Zealand or Denmark – and there’s a pretty good chance that they might be off my visit list forever.  Europe is close to falling off to me; they have people taking petitions to the court to end the life of babies with Down syndrome that slip through the screening process.  There’s a couple suing because their daughter did just that, slipped under the testing radar – and they want to be compensated for the life they have to live with her and her disability.  Poor kid.  What kind of parent wants compensation for the life they have to live with their child?  This stuff starts my head whirling. 

Here’s the thing, I’m a wuss at heart – it happened the day I had my first child.  I would try to play it off but I am the worst liar in the world and those that know me would laugh at me.  So there it is, I might have the softest heart in the world; I used to have a pretty thin skin but each day it gets a little thicker – it has too.  But I will be honest and say that on days when the world is too much I have a strong urge to pick up Bradley and climb into his toy box and hold him on my lap.  It’s obvious that Love for him is not going to be enough; I want to save the world, change the world and make it better for him and every sweet soul like his…but I haven’t figured out how to do it yet.  People with more money than me and more power than me are in charge and I am just a name on a petition and a written letter in support or in attack of legislation that I can’t really influence effectively.   I’m a small person yelling at the top of my lungs and I can’t seem to find Horton right now. 

But sitting on the floor with Bradley on my lap, his toys strewn everywhere around us, that’s what I can do.  I can watch him pick through his toys, curiously observing the things that grab his attention; marveling at the new things he figures out and trying to convince myself that the outside world isn’t waiting to invade.  Trying to promise myself that there is more good than evil out there, and trying to persuade myself to believe it.   For now it’s time to put my little guy in a bath, see if he’ll water the potty again, see if we can snuggle into a warm sleeper, a blanket, a little milk and maybe put his head on my shoulder for much needed sleep in some form of a peaceful way.   That’s what I can do, and on days when I feel overwhelmed like this I fall back on the plan we made when Bradley was born…Just take one day at a time.    

Spread the Word to End the Word!

We're fast approaching March 6th which is the day to stand up and take a stand against the R-Word.  It's one of those big days, one of those moments that you get to be surprised by those that take a moment to take a pledge to stop using the hurtful words Retard and Retarded.  I am hoping for the day to come when the word is no longer used at all - I am praying that it's in my lifetime.  

With all the things that we worry about with Bradley: his health, his cognitive abilities, his future...we know that there is also the moment that will come when the word will drop and he will be old enough to not only understand it and feel the pain from it.  I think back to the moment that I was told my son had Down syndrome, I felt the slicing pain of knowing that my son would not be like other little boys.  At the time it seemed important, that he wouldn't be like other kids.  Odd really, my girls really aren't all the same as the girls in their classes and I am grateful - but at that moment, it seemed like everything.  But never once did I hear the R-word in my head or my heart...but I saw the medical use of the word in the readings.  Reading the clinical use of it was just as painful to me as if someone had said it about him, or to describe him.  We were lucky, our midwife and her crew wrapped us up in a protective cocoon and made sure that nothing but support and love walked in our room.  There are times now that when I look back I wish I were there again.  I sometimes wish we were still wrapped in their comforting "arms" and had no idea how much Bradley would go through in the next three years.  I want to take all the loving people that wrapped around us and use them as a shield between Bradley and those that will not see him for who he is, but will look at him as nothing but a diagnosis.  

Some would argue that these fears of mine are a clear indication that we should keep Bradley secluded from the other kids at school.  That maybe we shouldn't fight for inclusion.  But let's face it, hiding from it won't protect him, it will only restrict him and keep him from expanding his brain and the scope of the life he should live.  So we want to be settled into a place that we can make into a home and let him grow up with the same kids, the same schools and be a familiar face to them to the point that his natural personality can start to emerge.  We've seen how hard it is for our girls to blend in as the new kids, we want them settled too.  Our ten year old has experienced bullying at school.  She is a lover of sports and is quite adept at them - this has proven a bone of contention with some of the boys that don't appreciate a girl having more skill than them.  I can't help but wonder what lies ahead for them, and if they have it rough, what then lies ahead for Bradley?   

It comes down to this, he has enough to fight with his health, his challenges...so we have to fight this battle too - end the use of the R-word. We have to fight to help people understand that words are weapons as much as we wish otherwise.  Words carry meaning, but the emotion and intent behind the words are what put the pain behind the action.   By bringing awareness to the word, we bring awareness to the pain the word brings.  Let that be one pain my son never feels...take a stand with us and stop the use of the word.   

A Gold Star Day

We started the day a little frustrated but that happens when the day starts at 5:00 am.  For some reason Bradley thinks that the earlier he gets going on his day the better he likes it.  So walking around in a fog, Eric and I stumble into the living room and find a kitchen where there's a coffeepot that we get cooking and then after a cup or two, I realize that it is Sunday and the great Church Quest is supposed to continue again today.  So I mustered the girls into action once they got up, and we headed out to check a new church while Eric and Bradley held down the home front.  What I didn't account for was the sudden, paralyzing fear that gripped my eight year old and left me sitting through a 3rd grade Bible lesson with no concept of what the actual church service was like.  I'll have to try again next Sunday.  Since our list is narrowed to those churches that have either a crying room, or a nursery - we're getting pretty close to narrowing down our search.  Oh, and we need more than five people in attendance, that service was a little uncomfortable for me and the crying room was so far in the back of the church it was like Eric and Bradley were in another service all together, but without a speaker in there, they were just hanging out and playing.

So anyway, after an interesting morning, we settled into a quieter day and one extremely rousing game of basketball with Bradley after dinner.  His belly laughs as he was lifted to dunk the basketball was I thought the very best part of the day...but I was wrong.  Getting ready to pop Bradley into the bath, he looked at his potty and pulled it out towards the middle of the bathroom, so I opened it up and using signs and words asked if he wanted to go.  He got excited and started signing the words to "Itsy, Bitsy Spider" (we do this every time he sits and tries).  So he sits, we start and he PEED!  Joy!  Excitement!  Since he hadn't gone to the potty since October it was a wonderful surprise for all us!  So here is our goofy family...all five of us standing in the bathroom cheering and clapping for Bradley while he stands in the middle of us, buck naked - clapping his hands and saying "yeah!"  throwing his hands up in the air in his excitement.  I'm not sure who was prouder, Bradley of himself or us of him.

I'm left with the knowledge and the certainty that it will never cease to amaze me how things work in this house.  A tough morning turns into a day that is a Gold Star Day!  It's a big deal that he went in the potty...it's just as huge to see the joy flowing over the girls at this small triumph from their brother.  Moments like these are the ones that keep us going.  The girls can fight all day with each other, they can get so caught up in their own play that they all but ignore their brother...but at the end of the day, Madison is the one to change a diaper and after helping me give him a bath, it was Sydney who diapered and dressed Bradley for bed - they want to be a part of his life, they are just as thrilled to take part in the typical parts of his day as they are to be a part of the amazing parts.  Because his girls mean the world to him, Bradley hugs them good night and just as he does every morning when the girls run off to school, he waves good bye...and gives them his attempt at "I Love You" - a fist in the air with his index finger pointing up and his hand bouncing up and down.  I know in time his pinky will also lift, but we get the idea now.

As Art Williams says: "I'm not telling you it's going to be easy - I'm telling you it's going to be worth it."  I keep this as my cover picture for "Bradley's Buddy Brigade," (Bradley's page on Facebook) because of days like today.  Today is a reminder that no matter how many obstacles and struggles there might be...in the end it's worth it!  My Oreos are worth it!  

Happy Sunday All!

A Challenge For Me

Before I saw the Facebook Challenge from the IDSC yesterday I had made a Challenge for myself.  March 21st is World Down syndrome Day!  It's an important day for us and I decided it deserved some of the same build up and recognition that we did for Down syndrome Awareness Month in October.  So here I go again.  Because Down syndrome is characterized by a 3rd copy of the 21st Chromosome some people who are much smarter and organized than me, got the rest of us going to recognize 03-21 every year to be the big deal it should be.

So anyway, here's my part - writing about life with Bradley.  I was considering my topics to write about today, and I touched on the Parent/Teacher Conferences we had yesterday for the girls.  I am a teacher by trade, there for a while it seemed like the only subject I was ever going to teach was English: grammar and Composition to the Americans and Conversation, grammar and idioms to the Japanese.  When the girls started school suddenly I realized that there might be some math education in there and possibly, oh, I don't know, Social Studies and Geography.  I realized my educational background did not prepare me for this new job of mine.  I had the boat in the water and no engine, I didn't even have a paddle.  So I had to educate myself, going over Kindergarten, then 1st grade...etc...on upward through the curriculum trying to keep up with my girls as they were progressing in school.  www.ask.com, you are my friend as you help me stumble over math that is so easy that I don't remember how far back I have to go in my memory to explain it.  Inevitably, I am trying to explain the problem at a 7th or 8th grade level and my daughter is staring at me like I have a second head ...then a little Internet surfing and I realize I have taken the very simple answer to the problem around the block four times, up the stairs, over the railing and back down into the pool before I climb out dry off and provide the solution.  I use to keep track daily but now they don't need my help daily and they're going to leave me too far behind.  Because the thing is, my daughters are wicked smart.  My 5th grader is a Math Star and her writing is incredible and my 3rd grader is the only kid in her class into 4th grade math and her writing is just as amazing.  Their reading levels are off the charts, and though they will tell you they are smart and one of the smartest in their class, there is no malice or conceit, it is merely a statement of fact.  And even better, these are the girls that the class likes, the polite girls, the sweet girls in the class.  So probably needless to say we came off the conferences yesterday trying to keep buttons from flying off we were so proud of them.

And then today we come back to earth.  I had been circling in my head where I feel Bradley is with his feeding.  The fact he is getting so many calories orally is so encouraging, and though I was definitely not for weaning as yet since he doesn't possess a strong bite and chew method - I was still feeling pretty good about his progress.  But then his progress report came in today, and his feeding therapist, who is known through the area as the best in the business, laid out how very far he has to go, which it turns out is really, really, really, far.  Sucks!  And then there's all his other assessments that put him so much lower than we wanted.  But that's how those go, his therapist works with him every week and he's willing to try all kinds of things and then for the Assessments a new therapists wants him to try all these new things and he is less than thrilled by their presence let alone their demands.  My boy gets shy and withdraws when they push.  He has personal space just like everyone does, his just happens to be the ENTIRE living room - and they invaded.  So those reports were a little rough as well.  And every time we get the progress reports I have to step back and regroup - remind myself it isn't personal and that it's only important to the insurance companies that want to make sure that the therapies are worthwhile and the school district so they know he needs to keep having a teacher and therapists each week.  Yeah okay.  But it still stings in the heart region.

I promise I'm not the mom in denial, I know that my son is delayed.  That doesn't stop me from sitting with him in front of his IPad and doing ABCmouse with him.  And it doesn't come near to stopping my excitement as he learns and then masters new techniques.  Here's my thinking, he might not get it right away, so we practice it - over and over.  Some of my research has taught me that his short term memory is a bit like Swiss Cheese, but where the holes move around.  I was a huge "Quantum Leap" fan, so I get this, and I can embrace this thinking and make it work in our life.  That being said, I have determined that I will just work on Bradley learning.  We don't have to stop trying to learn once he graduates from High School, we can keep training his brain for every next step.  There doesn't have to be a point where there is no next step for him, there's always something new for us to learn.  Us.  You read that right, we have a lot to learn together.  "We" are learning sign language and adding to our vocabulary.  "We" are learning how to eat: he does the physical side and I am up to eyebrows in the how, why, cause and effect of it.  I realized today that my son doesn't know how to: run, skip, or jump yet.  So guess what, I have to learn how to teach him how to do those things.  And it just takes me right back to Japan and teaching English all over again.  If my student wasn't understanding I would work the problem around and around until I found the solution that worked for them and they finally understood.  Turns out Bradley is no different.

Turns out the girls are no different, only they don't take so many turns in my brain to find the solution they need.  So now I'm learning to be patient and let the ideas formulate, trial and error, then formulate some more.  But here's the good news: between Madison and Sydney, I have no doubt that he will be reading and writing because if he doesn't listen to me - he wants to be with them and do everything like them.  In the future, this will work in all the best possible ways.  But I don't think that this is one-sided either.  These girls with the amazing intellect and busy brains sometimes need to just "Be."  That's something that Bradley gives them, when they stop buzzing around like bees to the hive and they just sit with him and read or play...they get the opportunity to just "Be" in the moment with their brother.  I think they need it as much as he does.

The Progress reports are always going to be rough, they're always going to tell us what he can't do.  From there we just build back up by going over all he can do and letting it play through our heads like a mantra until the sting eases off.  Whenever I start to think too much about Bradley's delays and let the worries start to have too much weight in my mind I remind myself this: The best life, a good life, is often lead by the person that has no problem meeting their own eyes in the mirror.  Having an extra chromosome doesn't guarantee this, but neither does not having one.  In the end, if all three of my kids live good lives, then that's all that really matters.  

Who I Am

International Down Syndrome Coalition- IDSC:  
Write a blog post about the person you love, using the "Who I Am" theme.  

It's another challenge...and I am all about the challenges! ;-)  I mean my life doesn't offer enough so I should definitely be on the lookout for more.   Oh well, look at that - the Challenge was to incorporate "Who I Am" into my blog..and I did - so done!

Well not so fast.  We all know I am much more long winded than that, so there has to be more...there's always more.  I am actually supposed to Blog about someone I love with Down syndrome, that should be easy enough right...only, how do you put into words who my Bradley is, are there enough words?  I guess we'll just have to make sure there are.

I Am a Mom to three great kids, three amazing kids.  And though I could blather on about each of them forever, today it's about just one of them.  Today, it's about Bradley.  Though the girls don't say it often, there are times when it slips out that they think it's always about Bradley.  But then they quickly say, he's the baby and he's been sick.  They don't throw out there that he has Down syndrome too, because it isn't about the diagnosis: it's about the time away from home at hospitals, the extra effort to feed, bathe and care for him, it's about the delayed tuck-ins because we're still trying to get Bradley down while the girls are trying to stay awake to get that last tuck and kiss.  He takes a lot of work, he requires a lot of compromises - Daddy kisses and tucks tonight while they're awake, and Mommy kisses and tucks after they are asleep and tomorrow night we switch, and so on and so on.  And it works.

And it works...  Bradley has the ability to hold Chaos in one hand and Calm in the other; when he puts his hands together it's a maelstrom of activity - the Hurricane and the Eye...one shoe down, the other waiting to drop.  That's who he is.  He isn't a diagnosis, he's a force of nature.  Who is Bradley?

He is the baby that falls asleep in my arms, his cheeks flushed rosy in the warmth that happens between the two of us and the love that beats from his heart to mine.

He is the Daredevil that climbs up and over everything, and I mean everything - from the play yard to the baby gate, to the couch heedless of what might or might not catch him when he falls on the other side.

He is the consoler that reaches out to hold whomever is shedding tears, patting them on the back and laying his head on their shoulder.  Comforting by being sad with them.

He is the whisperer.  His words come in tiny sounds that make accidental words lost as quickly as they are found, but always heard on the wings of a whisper.

He is the communicator.  With his tiny fingers and little hands he uses his language to talk to me, and he makes sure that I understand the important points of our life together...  milk, eat, cookie, bath, diaper, more of everything.  Together he and I have learned over fifty signs, the trick is getting the family to catch up so he has someone else to talk too.

He is the dancer, on his own or in my arms, he dances beside me or he dances with his eyes sparkling as he looks up into mine before he hugs me tight and holds on for the ride.

He is the caretaker.  He dances with his baby as he turns in circles.  He rocks it back and forth - both front to back and side to side.  He lays it down and covers it up for sleeping and if the baby needs it, he sings to it by lying it down in his lap and signing the words to "Itsy, Bitsy, Spider" because that is his favorite.

He is the Charmer.  He is the bringer of joy to those who meet him.  His smile and adorable self encourage love while his temper reminds us that he is just like any other 3 year old boy Hell bent on giving his mom grey hairs.  And the combination makes for a frustrating albeit charming package.  

Is that it?  Is that enough?  No, there's more to Bradley.  There's always more.  With Bradley it's the way he makes you feel when he smiles at you, the way his big blue eyes capture your heart.  He doesn't say much with his mouth but his eyes speak from his soul encouraging you to be more than what you thought you could be, to love like you never thought you could, and to understand not only your place in this world but your place in his.  

I've spent my life trying to measure up, trying to live to my potential and always wondering where I land on that yard stick.  Who is Bradley?  He is the motivator, the push in my life to work harder and learn more to find every means to encourage and guide all three of my children to be who and what they are meant to be in this world.  Perhaps none of them will discover the cure for cancer or how to implement world peace, but honestly, I don't have those answers either.  But if I am lucky at all, all three of my children will feel their worth when they look in the mirror and each will always know how much they are loved.  

Who is Bradley?  He is more than enough, and so much more than we ever believed possible.  Considering we're really just getting started...who he will be is going to be one amazing journey!