What would I say?

I'm posting a link today...a video that the International Down Syndrome Coalition posted for World Down Syndrome Day on March 21, 2012.  The one from this year was also very good, but this is the one that touched me the most, touched a chord in my heart that resonates beyond the video on the screen.  There are several reasons, and each time I see the video I am struck by something else in it that seems was designated to be for me.  At first it was simply the topic...If you could go back in time what would you tell yourself about your child.  To this day I am not completely certain that I could narrow down my long-winded  thoughts into a small enough saying to put on a poster board that someone could read in five seconds...but that's just a flaw in my abilities.  I think I might say something like the cover on our Bradley's Buddy Brigade Facebook page, but paraphrased: "I don't promise easy, I promise it's worth it"...because it is both; often at the same time.  

Then there was the song in the video.  I've mentioned somewhere in this blogging journey before that I sing to my kids.  I sang the lullaby from "Dumbo" to both my girls and I started to sing it to Bradley as well, but when he was born I was compelled to a different song, one that popped out without my clear conscience choice to sing it to him.  It's Phil Collins song: "You'll Be in My Heart" from "Tarzan":

I will protect you form all around you,

I will be here don't you cry

Cause you'll be in my heart...  

This video used that song.  And it spoke to my heart.  It resonates there still, and at three years old he still hears this from me from time to time.  

And then I saw the sayings and they comforted me for they were things I knew, things I wish I had known.  Words even that comforted me for the grief I felt in letting go of one dream in my journey to another and I felt they were forgiving me for ever grieving.  So it was cathartic.  Cleansing.  Renewing.  Living.  

I even picked up a new phrase that I could carry everywhere and use with great joy: "Normal is a cycle on a washing machine."  Because who wants to be a cycle on a washing machine anyway, we all want to be who we are and who we are meant to be...and deep down all we truly need is to accept and feel at peace with who we are.  If we are truly Blessed, others will offer the same acceptance and even a little love as well.  That is the most precious gift after all - no matter how many chromosomes you have.  

Today the Coalition replayed the video and though I love that they replay it, sometimes I feel the need to see it and I take forever to find it and I decided "enough!"  I'd put it here and then have it easier to find; because, true to form something new popped out at me this time.  You see there was this other phrase in there that I really liked and always remember:  "He will be the easiest of your three."  I have a He and he is one of three, so it doesn't take a scientist to see that connection.  But today I noticed this: the picture was not cropped to hide the date - Jan 9, 2012.  My son's second birthday, the day we brought him home from a ten day stay at the hospital after hiatal hernia surgery and essentially the unravel and then rewrap of the fundoplication that had saved his life.  Intense time, intense day, intense memories...  A message to me through another mom who had no idea how strongly she would touch my life and senses.  Is he the easiest of the three?  He was, he was so sweet, so quiet as a tiny baby.  Even at his worst moments, he found comfort in our arms and his ability to snuggle and say 'I love you' through his eyes was enough to calm us all.  But right now?  No.  But Bradley will get stronger and he will get healthier.  He learns a new sign every couple days, sometimes multiple and then every once in awhile he'll throw a new sign out to tell us what he wants or needs, and that helps amazingly in our ability to talk things out.  I don't actually weep at each new sign he learns, but I recognize the burning behind my eyes and I understand it is there because he and I are one sign closer to understanding each other.  A precious gift indeed, is that.  So someday, he just might become the easiest of the three again; need I remind you I have two little girls with one dangerously close to being a teen.  (shudder)!  ;-)  

So I've added the link to the video, I hope that you will take a moment to watch it, to enjoy it.  As I recently wrote to a new mom of a sweet boy with Down syndrome: 

Doubts, fears, and what ifs creep in sometimes but it is what it is. Some choose to be negative; some choose to see the good side. It's never all roses but if you keep your heart in it it's easier to miss the thorns. And when a thorn gets you, the love and support from the positive side helps to heal. I hope you find your way and all the potential joy.

We are finding our way with Bradley and that quest for joy is daily.  The finding of joy?  That happens daily too.  Even in the hospitals, Bradley always learns to do something new - a testament to the world that he will conquer someday.  

http://www.youtube.com/watch?v=jVxz71ygHbk

Life in a Picture

As I listen to my girls fight; seemingly non-stop, I sometimes wonder where things went awry so harshly that they hate each other...or act like they do.  But then once in awhile their true feelings come through and we see instead something that is much different.  A perfect example...put them in front of a camera and arms instantly go around each other.  If you look close, it's as if Madison is holding her sister, always.  I was looking through some pictures and each one that had both girls showed Sydney either in Madison's lap, in front of her with Madison's arms around her, or arms around each other side by side.  So this makes me think two things... either in the future they will be great friends because deep down they truly care about each other..or they should be actresses because they sure act like they like each other and looking back at these pictures they're going to have people believe that they were great friends.  Is that their plan?  Are they going  to tell their squabbling children that they don't understand the unrest because they got along so well...I mean look: my sister and I were very close!  Bah!  Bring the kids to Grandma...I'll set 'em straight!

Despite my cynicism I choose to hold to the hopes that they do truly love and care about each other.  I suppose all siblings fight (?) or at least I hope so.  I know it is part of growing up, and it's not easy having someone who KNOWS everything about you always hanging around you pointing out your flaws, reminding you of your imperfections.  I think we have a tendency to do that for ourselves, but it occurs to me that we might do that now - because we were taught that when we were kids and our siblings made sure we knew all about these faults we have.  Gee thanks...  Regardless, I keep picking up the camera and trying to capture proof of kindred spirits (of tomorrow - apparently).

Which brings me to Bradley.  Since my surgery, Madison has had to step into a more active role as big sister.  Suddenly, her cuddly brother has a temper and a personality and opinions of his own she had no idea about.  Yet through them all, she is still an adoring older sister who only yells when he hits first.  So there's a lot of yelling.  HAHA...  With Bradley's pictures both girls still fight over who will hold him, who will hug him in each shot.  There is a little more division between them in these shots, but the end result is pretty sweet harmony.  And people wonder why I don't shoot more video!  BAH!!!  Talk about ruining an illusion.

This was our clear shot, perfect clarity

And here's the one that meant the most to me, perfect harmony with a little blur.  

When you look through my pictures there are a ton of Bradley.  Looking back there have been a ton of both girls, I used to make sure we had a picture for every month so we wouldn't forget how they grew, but less digital of them.  With Bradley there aren't such clearly defined monthly increments; however, there are still a lot of pictures.  But I felt a lot of personal pressure regarding Bradley and his pictures.  Here was this new baby - a new baby with a special diagnosis and if I didn't document him in photos would people think that I didn't love him as much as the other kids?  Hmmm...  Is that what we think when a family with three typical kids has fewer pictures of their third child than the first or second?  No we think that the obvious happened: Life.  We don't think or conceive of an emotion like shame or guilt.   So why did I put so much pressure on myself?  I did, a lot.  He had his birth announcements within weeks and I had a hardback book made to commemorate the first few days, weeks of his life so he'd always have it.  Pressure...  What struck me then was this: what if Bradley doesn't care or notice, why am I worried so much.  But someone would notice, two someones; two someones I hope will love me for the rest of their lives.  What would the girls think if we were short on pictures of Bradley, if we didn't make the same kind of a big deal over him.  So I did the quickly made photo book through snapfish...I think it was.  But here's where it gets dicey, what are they going to say when they look back and I get this: "Why don't we have photobooks of us as babies?"  Ahhh...Matrix like bullet dodging later I remember: Madison has a scrapbook baby photo book that my friend put together for her and in so many ways more special.  So she's good.  Sydney...well, hmmm - let's just say I have some work to do on that front before this question gets asked.

So I kind of felt like I had swung the opposite direction, that I was overdoing it so to speak.  But it occurred to me that I had at my fingertips something I didn't have with the girls, a camera phone.  I could take picture after picture of Bradley on the cell phone and it was easy...but sometimes the picture was grainy.  So I had this really quite adorable little guy and just started picking up a regular old digital camera.  I put the girls in the shots, I get them alone, I get him alone..but I share less of them.  I find this conflicting.  I share enough to keep them happy as they are the wheels on this family train and they deserve their recognition, but I try to use safeguards as well for them.  I put more out of Bradley, I do that on purpose, but am still conflicted.  People abuse the pictures of our special kiddos all the time.  But here's my spin: the more you see how wonderful and cute Bradley is, the more you will accept him.  The more you see him as he grows, the more you will be willing to accept his changes.  The more you look, the more familiar you will become and the less you will turn away or be shocked.  Perhaps this explains why we stare at accidents, a safe way to absorb tragedy to better learn to cope...grrr, a thought for another day.

Regardless, getting back on track here...I mostly let the kids take the lead.  When I try to force a picture like little mules they dig in and won't smile.  Currently, to get a picture of Bradley I have to chase him down.  I made a Thank You sign so that I could take a picture of Bradley holding the sign so that we could thank everyone that has helped with our dream of a Service Dog for him.  It's a little blurry, but he was clapping and that seemed poetic.  Our life is rarely met with moments of crystal clarity, often there is perfection in the moments that are a little blurry on the edges but spectacular at the core.  My girls will fight to the point that Bradley and I have learned to sign "Stop Fighting" ;-) this is so funny for them to see it usually helps them forget to keep fighting.  And it's okay that they squabble, I just take in the moments of peace between them and hold onto those very tightly.

So I just keep taking pictures of them, I keep recording their lives now so that when they are older they CAN say, "See I loved my siblings!" and maybe they will take their own pictures as much to say "Look I love my sister and I love my brother!" but also to say to each other: "I love you!"

Back to the Keyboard

Miss me?  I'm back!  :-)  

I had to take some time off.  Last Tuesday I had shoulder surgery but in the weeks before, it just hurt to breathe let alone type so the little typing I did - I saved for the youcaring.com site as we campaigned to fund raise for Bradley's Service Dog.  I tried to give the site some of my best writing, some of the best of me.  I have a list saved of all the wonderful things that people offered in their comments to support and to love Bradley.  The pen IS mightier than the sword...and the pen is also gentler than a whisper.  The memory of what you might have said can fade, but on paper...they remain.  When Bradley was born we received emails and comments to us through our Facebook pages.  When the shock wore off and I found myself going back more than once to reread the words I knew I needed to preserve them.  So I have them all safely saved, now I need to print them out because well...I just don't trust these newfangled computer thingies...they could eat those words and spit them out as jargon if I'm not careful.  And maybe simply because they still make my eyes start to mist when I go back and read them...well, they are worth saving.  The same goes in our quest to fund a service dog for Bradley.  The words, the comments...the love inside them, those are the ones that have to be cherished and saved.  Someday, Bradley will want to know about the love that surrounded him and held him close.  He'll want to relive those moments and revel in that feeling of being so completely loved.  Because let's face it, there will be rough days ahead.  

For now, the whole year ahead will be so LONG as we await the first meeting with his new dog, not to mention the time after as we wait to bring that dog into our home permanently.  I'm turning 40 in a few weeks so adding a furry child to our life is a much better option than giving Bradley a human child to play with. ;-)  It will all be worth it when we bring the dog home.  Bradley will have a constant companion, no matter what he does there will always be someone there who loves him like Mom and Dad do; but calms him in ways we wish we could unravel.  The dog will hear him in ways that I can't, and that is my superpower.  Excited?  Oh yeah!  Patient...oh Ye - No, not really...but trying!  Blessed?  More than we deserve, but not more than Bradley deserves or needs.  So we just try to be better, to live better, to be worthy.  

As the summer unfolds around us, we are as always facing new challenges.  Our Oldest is going into 6th grade which is Middle School here...suddenly her planned school has me a nervous wreck.  She's moving into being a tween...how that happened at 11 I am not certain, but I am certain I don't care for it.  She's in a hurry to grow up, which all kids are.  I am in a hurry to catch up.  Things she showed no interest in are now paramount to her very existence and I missed the turn-off to that road to crazy.  One of us will get our feet under us and then the other will just stumble after...I am hoping to right myself before she does...otherwise she'll be just dragging me along.  The eight year old is turning nine in August...it's not that she's getting so old...it's more like...she's only going to be what?  I've checked her birth certificate, it's really only nine.  And sometimes she even acts like she's almost nine which is just so confusing for her Dad and I.  One minute I'm talking the burgeoning of astrophysics and how she's going to create the engine to get her through the Milky Way to the other side and the next she's running around in her obnoxious phase being an eight year old brat. If I don't get my feet under me with this one...she'll just leave me behind, there will be no pity dragging on her part.  Yikes.  

As for Bradley?  Well, there is always a new challenge for Bradley.  The last month he's had an extremely high amount of air in his stomach with no acceptable external explanations.  So while we're battling this issue that often makes him have no appetite, we have to figure out how to increase his caloric intake by almost 250 calories before November...ah, hmmm....  oh...and it's summer...he needs 20 ounces of water as well, everyday.  Me, speechless?  No really, is that possible?  Well, here I am - not sure what to say.  And I guess that's okay - climbing this new mountain is taking most of my strength and breath so who has room to say much anyway.  For now he's on an antibiotic because he has staph...in that way doctors have where they scare the bejesus out of you then deliver the good news...  he told us it wasn't MRSA, but the other one...  Thanks Doc, didn't know that it might be either.  And this is what we've come too... he tells me that once it clears up use a cloth and give him a daily diluted sponge bath with the bleach bath - and I said okay because it made perfect sense to me.  With his button he shouldn't sit in the bathtub with the diluted bleach...major potential trouble there; so, sponge bath it is.  I don't know how he gets these things I really don't.  But for the next week, he's bathing in Hibiclens because I don't need it anymore and I think he really does.  

Brain wise, he's amazing.  He's going to amaze.  His Pediatrician was correct, he was a prophet.  He looked into Bradley's eyes and he glimpsed at who he would be.  Bradley is learning more and more signs as he is in a mimic stage so when the Speech Therapist shows a new sign, he wants to copy it.  The lovely thing is he is remembering more and more of them.  And he's spontaneously signing - almost always about food, but that doesn't bother me too much.  When you ask him what he wants, he'll sign the non-foodstuff.  But for now, he'll tell me he wants to eat, he wants to have his milk, his water, his cookie...and the new favorites Cheese and Bologna!   He's now a huge fan of bologna and signing his desire for it at whim.  You would think this would indicate smooth sailing, but just as one never quite knows what is going on inside bologna...one never really knows what's going on inside Bradley either.  But that's okay.  He frustrates, he confuses, and then he surprises and rewards.  His potential is in a box with several locked compartments: my job is to find the right key for each compartment.  The difficulty is trying to juggle three boxes, several locked compartments, and several keys as I try find the right key for the right compartment for the right kiddo.  I guess if the girls don't start shaving the wrong body parts and Bradley doesn't start wearing a training bra then we'll know I'm doing alright.  Good grief!  

Happy Summer All!

A Day for Greatness

Never for a minute believe that the smallest moments won't bring the best reward.  Just last week Bradley used top and bottom teeth together and bit through rolled up cheese; twice.  We can go further and claim the third bite - though thank you God he didn't bite all the way through my finger.  But he used his teeth together ;-).  So consider this when you start your next meal, imagine that you aren't able to bite together very well and when you do, imagine how it must feel to not know what to do with the food in your mouth.  Today Bradley used his tongue in what is called 'lateral transfer' and moved peaches from the center of his mouth to the left where he could use his molars to chew a little bit.  Mind you, peaches are slippery so I'm certain that one or two chews and he just swallowed... Still, a chew is a chew and in the world of Bradley - a chew is a victory.

During Physical Therapy today Bradley tackled the bouncy bridge.  When his therapist encouraged him to bounce he voiced his disapproval and walked into my arms for a hug, his little body shaking in fear.  I wanted to sweep him up and in my head I saw us running from the playground to the safety of the car.  However, I hugged him and told him how proud of him I was.  With a smacking kiss, I tousled his head and let him go.  He then decided to sidestep across the bridge and even managed to bounce his knees just a tiny bit, enough that I knew he did it and I told his PT.  Remember, the tiniest movements and moments with Bradley.  He didn't move the bridge for sure, but I felt the impact all the same.  As it was really warm today, he was the one to end our session as he moved away from the playground and then finally lifted his arms for me to carry him the rest of the way to the car.  We have Sydney now and wait for Madison, but my triumphant warrior is sleeping peacefully in his carseat, so tired from such a day of tiny steps and huge moments!

Maybe I can't keep him above 30 pounds, maybe the Peds GI is not going to be happy because of this on Friday, maybe our time on the feeding machine will extend out through the night again.... Maybe, maybe, maybe...lots of maybes, lots of stepping back.  But these are my challenges to shoulder, Bradley is conquering his.  Life is requesting more from both of us, he is showing me how to keep putting one step in front of the other until we just GET there.  Bradley is going to keep pushing forward: he's going to keep learning how to eat, how to master the way his body moves, he's going to keep pouring half the cat food on the floor until the day he hits the bowl with all of it.  Bradley will learn to leave trash in the can and not to go back for it so he can keep practicing.  He's going to put his head through his shirt on his own so he can put it on by himself , and he's going to master pulling his pants up his legs as well as he puts his arms in his sleeves.  And all of it will come in tiny movements that will build into great moments.

Maybe you want to know how I can be so sure... Look into my son's big blue eyes; see to his very soul, and tell me how you can be anything but certain.

Sleep Walking

It's amazing what your body gets used too.  We got used to not sleeping at night, if Bradley wasn't up one of the girls were, or that dastardly pump was letting us hear something.  It got so bad that the idea of a coffee IV was something I had begun to consider asking my doctor about.  Well, not really...but I sure was putting it away - I can feel my Cardiologist cringing and shaking his head as we speak.  We've recently switched away from the night time drips to Bolus feeds with Bradley.  What does that mean?  I'm glad you asked.  Rather than keep Bradley hooked up all night, we are giving him feeds by: syringe, gravity, or bigger amounts over a shorter amount of time by the pump.  First result, he sleeps better at night!  Hallelujah, enough said!  Well.....hold that thought and keep coming back to it - we're going to need it.

It's all about tolerance and titration.  With his Feeding therapist, Bradley was quite the show-off, took in four ounces plus some by mouth and proceeded to dump it all later in a most painful fashion.  He did however, sleep through the night.  Then I backed off to just four ounces...still dumping...back to three ounces...still dumps it....grrr.... Fine, three ounces with his pump for an hour...I got nothing better to do than watch "The Wiggles" and keep him contained on my lap.  By syringe I can do 2 ounces at a time - gravity: shmavity!  This is an open syringe that let's the Pediasure flow into his extension and button based on how high or low I hold it up - so slow or fast, but it sure doesn't take all that long.  I guess we'll go back to that when he can handle the slow syringe.  The Dietitian told me he has to drink two and a half cans of Pediasure a day plus his regular amount of food.  Got it!  Watching intake like a hawk!  If he doesn't get two and a half cans he needs the remainder in his through his tube...got it!  Carefully trying to decide - will he finish that cup of milk or will he need a tube feeding?  Extension on just in case - ah, tonight he finished it....try to take of the extension - oh look very awake! For hours....  Tonight, leave it on...oh look...bleeding from the button site because it pulled....  Just shoot me!  But he's sleeping through the night!  Yes!  No...sort of, but mom not so much.

Deeper sleep, better sleep....more dreaming, more imagination - such joy, such wonder, so many night terrors! Really?  Yep.  Crying out in his sleep...crying in his sleep...fighting me in his sleep because he was crying like he was awake but when I laid him on the changing table to vent him...World War III breaks out cause he's still asleep! Who is this kid and how can I make this any better?  Therapies during the day?  Hah...that's a joke!  Bradley was so frustrated, so overwhelmed by his own brain trying to catch up with itself...by all these new therapists coming in that he shut down.  Didn't matter if you were his favorite...he checked out when they were here.  So we went back to the old fashioned way, where Mom taught him his colors and the signs to go with.  And we ditched two therapists, because the results weren't worth it, and though I am nervous about it...we are going to try two new therapists soon.  One is supposed to be fluent in sign.   My response was, great - cause Mom doesn't know all the color signs and his was, we'll teach him Verbs...  Uh, yeah - we could do that too.  Great, he'll be able to teach Bradley to say "I am really angry at Mom!"  Which is better than the implied message he gives when he is trying to yank my hair out by the root.  Ah communication!  ;-)  Such joy!

Worse, suddenly he only wants pudding...hmmm?  Can he give up his Pediasure and eat pudding three or four times a day and actually survive...let alone thrive?  Yeah, I didn't think so either.  So I had him checked, sore throat on Friday but clear and happy on Monday.  Still....no chewing.  Luckily, his feeding therapist; who I believe will be sainted before her life is over, gave me the name of a great dentist.  Turns out Bradley is trying to get his first molars in on the top, in the very back.  The gums are angry and the teeth are just pushing through and may take months to push through because the only thing fast about Bradley's teeth are how quickly he can turn them on you if he can't get your hair.  Though this biting thing is happening less and less, my mentioning it here is like requesting it for later today...so well...look out and don't say I didn't warn you.

Bradley was pushing close to 31 pounds when we went to the Peds GI Doc in March...somehow in the last month we've managed to lose a pound and a half.  What the Dietitian doesn't know is that he actually was weighing in at 28.8 pounds after our phone call.  Worried mom weighed him and the 29.4 I thought he was at had dipped overnight.  How does that happen?  We're back to two week weight checks to see if he can stay off the night pump at all.  So now our day has to include at least two bolus feeds at least one with the machine, an hour each of three ounces, just to make sure that he gets all he needs to get to gain some weight back.  He has to get his calories.  They can't all come from pudding...well, no you're right...they can't all come from pudding.  I am reverting back to his puree days where he would mow through sweet potatoes and cranberry sauce...things like that that are so soft his top back molars don't have to connect with lower back molars - soups, but concentrated because otherwise they are too thin and he can't hold them in his mouth.  And since we can't afford any illness right now, he didn't go to watch the girls play Volleyball last night and if the wind doesn't die down - he won't get to go on Saturday either.  I feel like he's back in his bubble.

But here's the irony.  He can't handle a gravity feed of three ounces but in the middle of the night last night he took almost five ounces by mouth from his straw cup.  Hmmm....  It doesn't matter that he and I slept through the night before last right now I feel like he has been up every night for a week.  That's how out of practice I am becoming.  It could be I'm getting old and just need my sleep too.  Either way, I'm hoping he sleeps through tonight so I have a chance to catch up again.  The alternative is returning to the nights of not sleeping every night, not sure that I am a fan of that idea at all!  :-)

Just Wow!

We spent the weekend with my Dad, we wanted to let our Madison see her Grandpa for her 11th birthday coming up in but a few hours.  I've spent the weekend awash in the flow of nostalgia that has occupied my mind.  I have been humbled and have thought longingly of those that I just miss having around me, the ones that make me feel better about me, the ones that accept my flaws and love me anyway.  I know that life is going to continue to move people in and out of my life as necessary, but that doesn't ease the moments of farewell...so many of those happen when you don't realize it and no real goodbyes are said, just distance followed by silence with a sad regret that somehow that's just how life happens.  There is not one person the same that held my three children on the day they were born except for Eric and I, although Madison comes close, I mean she was there the first time and then held each sibling as they came along on the days they were born.  Small club.

Exclusive club actually.  Now the four of us: Eric, Madison, Sydney and I are the ones that are here for Bradley.  The first day he peed in the potty, we crowded the bathroom and cheered.  When he started loving "The Wiggles," the girls danced until he danced and we all stood in a circle around him as he learned to sign "Rock-a-bye Your Bear."  And we cheered.  Last night, a complete stranger revealed one of those moments you hold your breath for, one you don't know you've been waiting on.  We had dinner at the Chili's in Encinitas for Madison's birthday.  At the end, Brooke the manager stopped by to ask how we enjoyed our meal.  Bradley waved to her, he signed "thank you."  Ms. Brooke is a special Ed teacher and in return she started signing back to him.  He was out of the high chair by now and between Eric and I, at her signing "are you happy tonight". Bradley jumped to his feet and was signing back to her.  He told her he was "happy" he said thank you.  His face glowed with delight and joy, someone other than Dad and I knew how to talk to him and understand him.  I told her of our difficulty trying to keep up with his number of signs, she told me to come by anytime, I wish we were in San Diego now.    I managed not to cry, but barely, it just felt that good - it was that important a moment for Bradley.

We got home this afternoon, after the long drive Bradley was mellow and quiet.  His diet changed drastically a month ago, quiet is a step up from the constant crying, the frustrations, and the therapy sessions that have melted into nothing but tears for him.   We have struggled long and hard through this past month, though sleeping better at night, Bradley's brain is developing quickly - often faster than he has the ability to handle.  Bradley knows the colors: red, yellow, blue, green, purple, orange,  black and white and  he can sign those first six for you.  I've been able to do this with him; last night he rewarded me at the restaurant by pointing to then signing for the red crayon and then blue and orange.  He can sign "happy" and he is closer to telling me he doesn't like or want something without throwing cups or food every time...still does, but 2 out of 10 times we get lucky.  He is Mr. Amazing with his IPad.  He can drag puzzle pieces and he can follow directions better.  Bradley will note the difference between cow, sheep and pig...in his favorite book he will make the animal perform and then turn off the light and hit the arrow to leave the screen.  Oh and watch what you do with your hands, he wants to copy everything you do.

Through all this, his tummy is fighting him, his health has been a myriad of the unknown thing that is giving him a hard time...but he is determined to amaze.  So when we got home he was quiet, then ate little.  So we headed to a bath,he hates them now but likes to tease us with a minimum two second sit on the potty...usual max of five seconds.  Until tonight...  Tonight I took a gamble and got lucky.  Diaper free he suddenly showed signs of action, so I popped him on the potty and was excited to see a few drops of pee...followed by a suspicious odor.  Bradley did two things at once...he pooped for the first time in the potty ever, and for the first time in a month he didn't cry during the process.  Sydney was walking by, so I hailed her down to go find Daddy, Bradley gave her a quick peek, so she took off like a shot...he came running, Madison came running, and Sydney was of course back.  Yet again, we four camped out around Bradley and we cheered, we gave high fives and knuckles, a few times, told him how amazing he was.  I signed to him how "good" and he smiled huge and tried to sign it back.  The he rewarded us by peeing some more...and there was great rejoicing in our bathroom again.  :-).   He was so pleased with himself he showed off on his IPad as he settled for bed.  He likes to remind us what he knows how to do.  :-). So Bradley had an awesome day. Tomorrow, he'll try to sign Happy Birthday to Madison, he'll get happy out, the rest is meant for surprising I think...Bradley will let us know. Wednesday the girls will start volleyball again and he'll be the one with mom, both of us cheering for our two favorite volleyball stars, and Bradley is an excellent fan. He claps then signs "Go, Madison" and "Go, Sydney" and he claps some more. It would be hard to top tonight if my beautiful daughter weren't turning 11 tomorrow. I guess Bradley just set up this week to be awesome!

Butterflies

The girls are on spring break right now, two weeks of it in fact.  Two weeks of waking to Bradley in the am, not an alarm clock.  It's a beautiful idea, too bad Bradley thinks the mornings are so quiet that he should be up at ten minutes to six most mornings.  Makes me almost long for the school days when I could occasionally sleep until 6:30.  But here nor there, we were sent home the class butterfly project.  Sydney was beside herself with excitement carefully watching each chrysalis and lamenting the apparent loss of one which was resting on the floor of the cage.  But I told her to take heart, the instructions indicated the possibility that even that one might produce a butterfly.

Turns out the instructions were right.  Our little friend that had fallen down would reveal a butterfly.  The first one had obviously ate the most and wrapped himself up and came out with a set of beautiful, large wings. The next one was a bit smaller, but barely.  The third one, smaller with slightly asymmetrical wings...and our fourth one...well, this one had the smallest set of wings and they were bent almost sideways and took quite some time to straighten up just slightly.  It took him longer to dry or even move at all so that we thought the little thing was in fact dead.  What a way to ruin the start of Easter morning.  Not only had all four emerged while Sydney was sleeping, but after sitting next to the counter and watching them throughout the first days, now one was dead?  She took it extremely hard, but maybe understandable.  You see, Dad lost a beloved aunt on Good Friday and though our girls never had the joy of meeting her, our girls are very loving and felt his pain as their own, trying to take some of his burden onto themselves.

When we returned home from church, we were all thrilled and hugely surprised to see the last butterfly flapping small, beautiful, albeit folded wings.  It was alive!  Sydney was thrilled but very worried about his wings, would he be able to fly?  I didn't know.  All throughout the day I found myself staring at the butterflies, watching with concern how well our fourth butterfly was fairing.  Resilient, brave...I gave this butterfly these attributes, and I spoke words of encouragement to him.  I told this butterfly and I told Sydney that if he couldn't fly he could spend his life with us, that we'd make sure he had a safe home for his two to four week life cycle.

Sure enough, he cannot fly.  When given the opportunity to try he fluttered near the ground and then sat on the concrete.  Rescuing him to put him safely into the net cage after a second attempt I could feel his body trembling in fear...I felt his fear and was stunned that he had any.  And I thought shame on me for being surprised that even a butterfly could experience the basest of emotion, fear.  So we brought everything inside, I gave him fresh sugared water and a brand new orange he doesn't have to share with anyone and hoped that he'd forgive me for scaring him so badly.  We won't try again at freedom, but Sydney believes fresh air and warmth outside will make it happy.  I felt his wings trembling, who am I to say whether he will feel happy or sad, excitement or joy...but I see a well deep with compassion in Sydney as she cares for this very special butterfly that was given into her care; and I know how that makes me feel.

We have two cats and one very special butterfly with broken wings.  The irony is not lost on me.  I never thought I was an exceptional person that was given Bradley because of it...I have always known that Bradley was a gift that I was given who makes me more than I was before him because he is exceptional.  Because of Bradley, I held my breath and spoke words of encouragement to a butterfly.  Because of Bradley, I moved with incredible speed and gentleness to rescue a butterfly once I knew it couldn't fly.  Because of Bradley, I see today the kind of compassionate and caring person my daughter is going to be.  She would no sooner turn away a broken butterfly then let anyone tell her that her brother is not perfect as he is.

Bradley didn't create a broken butterfly.  Bradley opened the eyes and hearts of a family to see beyond the usually accepted, and because we do, we can see a very special butterfly living in a net cage in my kitchen for as long a life as it can have.   A coincidence that we were asked to care for the class butterflies...hmmm, maybe.  But you know, a coincidence is just God's way of saying Hi.