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!