Friday, January 6, 2012

What a Year a Difference Makes

One year ago today I was sitting in a neonatal cardiologist's office watching fish.

There were a variety of goldfish and a large sucker fish who was avidly doing its thing as it hung on the side of the glass.  It sat there, mesmerizing me and munching on microscopic algae as its tail waved in the current.  The hum of the filter provided balm to my already fraying nerves;  my aunt had passed away a few days before and I had just heard that a dear colleague had been almost killed in a car accident.  My belly had grown to enormous proportions and I could barely walk, stand or sit.  I was ignoring the itchy/sweaty/squeezy feeling my "batman" support tights were imposing on my lower half in the fight to keep me from getting a blood clot.  It didn't matter.  I was the sound of one hand clapping.  I was Zen.  I snapped out of my daze only slightly when my name was called and ambled into the office, a lazy smile on my face.

Less than half an hour later, Zen would be replaced by Stunned with an Underscore of Building Panic.  An echocardiogram on both my unborn babies had shown that baby B, my girl, Zoe, was fine but baby A, my boy, Wyatt, had AVSD and probably a chromosomal disorder, most likely Down syndrome. If the doctor had leaned over the counter and slapped me with a dead fish, I would not have been more surprised.   I listened and made notes and teared a little. I (somehow) had the presence of mind to write things down, as my memory was shot and I knew that my relative calm was momentary.  That stunned feeling got me into a cab and got me home.  Once inside the door I half tore off my coat and finally collapsed, sobbing.  It was an ugly cry, a guttural cry.  Definitely a contorted 'wild horse face' cry.  I was completely oblivious to time and space and the pool of dirty, salty water that had melted off my boots and was currently soaking my pants.  I was alone and completely helpless and beyond any hope.  You hear people say things like "it felt like my heart was ripped out" and you think "really?", but this... this is pretty much as close to the truth as you can get.  Your chest aches, you can't breathe and you have that discombobulated feeling that you are teetering and about to fall, about to slip into unconsciousness or death.   The room was spinning to keep up with my racing thoughts. All the reassurance from the genetic counselor in September was pointless.

They were wrong.
My son was disabled.
He was less than perfect.
My son, my baby boy, might die at worst or be delayed at best.

Why?

Why why why why why?....

Why, when I had done everything right--when many people do drugs and all sorts of horrible things when pregnant then go on to have healthy babies--I have this happening to me?  I pulled myself up to the island and half-collapsed again and cried into a stack of bills and junk mail, all the while still clutching my keys. An indeterminable amount of time later, I stood up, hastily wiped away the tears and trails of snot and cleared my now sore throat.

I had phone calls to make. 

It's been a full year and I still tremble a bit when I think of that day.  That day was really Day 1 of my New Year.  Day one of My Year of Down syndrome.  In the subsequent weeks my panic would lessen as my knowledge grew.  As my understanding and acceptance grew.  As my network grew. As I ultimately got over myself.

During this time, I've done a few things.  I've created this blog and found a little bit of therapy and a whole lot of coping for myself.  I'd also like to think I've become a better writer in the process. If the emails and PM's and comments are to be believed, I've touched many.  When someone contacts you to say "I don't know anyone with Down syndrome and I don't have any kids and I found your blog by accident when looking for wine blogs... but I really like your stuff", I think you can say that you are doing something right.  With this blog is the Facebook page, the Twitter feed, Pinterest and the poor neglected YouTube channel.  Between all the social networking, the research, the kids and my full time job as a Mental Health RN, well, let's just say life is pretty full.

My personal support system has expanded as well.  During the course of the year, I've met up with (both in real life and virtually) parents of children with Down syndrome.  Now, my network stretches across the planet, from the UK and Ireland to California to South America and on to Australia and the South Pacific.  It is unbelievable, it is fantastic and so comforting to know that we are all united in this one thing.  Almost everyone has a story like mine;  they can remember the day they ''found out" in crystal clarity.  Sometimes it was ahead of time, more often than not, it was in the delivery room or in the NICU.  We all have different levels of understanding, our lives have taken many different paths and we all certainly don't see eye to eye.  But we all share this one this one thing.

We've seen a wave of inclusion in this time too, from home coming kings and queens to cheerleaders and swim teams.  The latest is a boy named Ryan, who appeared in an ad for Target.  We don't have Targets here yet (so I haven't seen the ad first hand), but they are on the way this year.  I look forward to supporting them in the future if they continue with such inclusive advertising, although, being Canada, we'll probably end up calling them "Tar-Jzay".

The biggest thing this year, no surprise, is the babies themselves.  Zoe, Wyatt's "typical" twin is bent on being Daredevil.  She is determined to make her own way as, unlike her brothers, she is an almost walking, almost talking marvel at 10 mos.  No one told her she was "6 weeks corrected", and I'm pretty sure she wouldn't listen if you did.  Wyatt has beaten quite a few odds himself, other than the 0.003% we were given as the chance he had DS in the first place.  His AVSD is quite balanced and has proven to have little or no effect on his development.  The boy that was supposed to be in congestive heart failure by one month and needing open heart surgery by 3-6 months has pushed off his surgery to 3-4 YEARS of age.  We have a cardiology appointment coming up this month and we will see if what I think (and hope) is actually happening:  that he has pushed his surgery date back even farther.  We work on his muscles daily and he sees the OT twice a month.  He has gone from a fearful unknown to a 4lb, 13oz baby with no muscle tone and an upside down ECG to a thriving 15lb (-ish) ten month old with sparkling eyes, a sense of humour and the ability to charm everyone around him.  He, himself, is the greatest accomplishment of this year.

We've all come a long way from my puddle on the kitchen floor.  Patience, time and education have gotten us all here;  these things will sustain us through the years to come.  We have learned to embrace all of our children for who they are, especially our twins that are so radically different.  I've even found a few moments here and there to regain my Zen.  What a year we have had. What a year a 'difference' makes. 

Happy Wy and His Rattle
My Happy, Healthy Baby Boy<
Wyatt, 10 months old.

12 comments :

  1. the biggest compliment is to you and your family. for sharing with your 'public'...this wonderful, maybe sometimes frustrating, adventure. That is courage and truth.

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  2. I just found your blog and enjoyed today's post. Like you I experienced that day you will never forget. I am much farther down the road then you are. My April is now 23. We also adopted 2 boys with DS...Jake(19) and Sam(14). We have a very full, busy life. If you would like to take a peek at the future check out my blog www.aprilanecdotes.wordpress.com I will check back often to see how your guy is doing. Happy New Year!

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    Replies
    1. Thank you very much! Hope you had a Happy New Year as well!

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  3. This is unrelated to your entry but I stumbled upon your blog after discovering that our unborn son has DS. I appreciate your blog and what it has to offer! Thank you for sharing your story and your family. It gives me a new hope and excitement to meet our son in May :)

    -Those Newmans
    barryandashley.wordpress.com

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    Replies
    1. You are welcome. I am currently enjoying your story as well. :)

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  4. I enjoyed your retelling of my worst and best times as a parent of a child with Down Syndrome. My twins are almost 12. Good luck on your adventures. Our son with DS is named Davey and is much stronger than i'd ever expected in all ways. Try to enjoy the journey as it takes some unexpected turns. His love is what sustains us with new energy each day.

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  5. you can add to your parent network list Albania :))big hugs for Wyatt

    ReplyDelete

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