Wednesday, December 21, 2011

The Best of Times, The Worst of Times...

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all going direct the other way..." --Charles Dickens, A Tale of Two Cities 
 
This year has been all over the place for my family and I. It's been a roller coaster at times and mind-numbingly tedious at others.  Our life this year has had more twists and turns than your average goat path through the mountains.  It's beginnings were inauspicious enough;  2011 started, as many years do, quietly in my basement.  My OB had taken me off duty a few days earlier; instead of me greeting the New Year alone at work, we did so together, in front of a crackling fire.  My brother and his fiancĂ©e were visiting and the evening was filled with snacks and Rock Band and footage from Times Square.  It was probably one of the last "normal" evenings for us as I stuffed my face with mini beef wellingtons and patted my enormous belly.  A normal New Year's Eve, with kisses at midnight, phone calls to far away parents and the frost twinkling as our company crunched down the drive towards their waiting cab.  Normal.  Typical.  We put the leftovers away and went to bed shortly after 2.  After all, our son would be up and raring to go sometime after eight.

A few days later, nothing was normal.  My aunt had passed, a friend was critically hurt and my unborn son had a hole in his heart and likely had Down syndrome.  A week after that and I was lying awake on the futon in the future nursery writing (what would eventually be my first Down Wit Dat entry) in my head.  At first, it was a crie de coeur, an open letter to my family and friends, explaining what had happened and what had changed. It also put the unintelligible screaming in my head into words, ones that I did not yet dare speak aloud.  It worked... That "note" and the ones that followed helped keep my loved ones informed and kept me focused.  The writing was raw,  as rough and bleeding as the emotional wounds it described.

People began to contact me and ask for new updates.  As new information came forth about my son, it was easy to do so.  Once the babies were actually here, once they were home, it seemed to be a never ending parade of doctors appointments and things to do.  By the time that they had been home two months, Wyatt had gone to four doctors (two of them more than once) and Zoe had already had surgery on an inguinal hernia.  Each new thing was mind-wrackingly, gut-wrenchingly stressful, but we soldiered on.  I started putting my entries together into what would eventually become this blog.  The kids grew, they developed... eventually I tagged in my husband and I went back to work as he took over the house.  Here we are in December again... and where we are now seems so remote from last New Years Eve that it seems to have happened to some other family.

When you consider it as a whole, it does seem like a bunch of "bad luck", a string of negativity that would threaten to garrote the best of them.  One could look at our year that way.  It has been pretty painful in spots.

I however, refuse to.

To write off 2011 as "a difficult year" would be to negate all the positive outcomes as well.  After all, this was the year that we welcomed not just one, but two new members to our family band.  Two beautiful, personable, remarkably healthy babies who are completely nibble-able.   From their respective medical encounters has come a wealth of knowledge that we have gladly passed on to those that wanted it.  Through Wyatt and his "atypical"-ness, we have discovered much joy and learned to live, not task our way through every day.  We've gotten closer as a family and set free a lot of the emotional flotsam that has slowed us down.  We've learned the value of hope, the necessity of celebration.  We've learned how much we love, and how much we are loved.
 
That does not mean that we gloss over the tricky bits either.  Instead, we have embraced our "difficulties" and used it to fuel our endeavours. This blog for instance, and any and all education and outreach projects that have and will spring from it... would not exist if I did not experience this year in it's entirety.  My determination to make this process easier for the 'new parents' that come after me is a direct result of that.  Each new insight into how much work there is left to do helps me get out of bed in the morning.  Any anger, any pain that I may have regarding Wyatt, his health or how the world sees people like him is being re-channeled and reborn into dedication, purpose, even passion.

Early on I was confronted with a question:  if I could change Wyatt so that he no longer had Down syndrome, would I?  Then, when everything was fresh and new, I answered with an emphatic yes!  Now, the answer is much different.  I didn't want a "Down Syndrome baby".  Wyatt was Down syndrome in my mind, and it, he.  To me it was the end of the world.  Now, it is no longer the end of everything, but a beginning of a new thing.  My thinking has evolved.  If I could somehow change his genetic make up, I don't know that I still would.

But, even as I'm writing this, I ask myself why would I even bother at this point?  Yes, he could probably go on to med school.  Or not.  Maybe he'd be a star athlete... or not. The list of things that he could go on to be if he didn't have DS is a long one, for sure.  I know this as I listed them off to myself, one by one, once I found out that he had it.  He may not be a dashing surgeon or a brilliant psychiatrist, but he will also not know what it is like to work for an unforgiving public who only cares about what they think you should be doing for them, right now.  He may not be the star quarterback of his high school football team either, but he also won't know what it is like to blow a knee and be a washed up piece of meat at 18.  He will probably be subjected to ridicule and sadness at some point at the hands of some cruel, hate filled individual or even an ignorant one that "doesn't mean it that way".  Those may even happen at the hands of a person of authority.  As time has gone on in this year, my answer has changed a great deal;  instead of fearing the condition that makes the world a big bad place for him to be in, I want him to keep the unique perspective that DS will allow him to have that his brother and sister will not. 

We have no illusions of the future.  Maybe we are in a "bubble" of happiness right now, as my critics would contend, or not. Both my husband and I know that as time goes on, as his siblings develop into the adults they will become, Wyatt may be left behind at some point. We don't know when, or how or even "if".  As his features become more pronounced as he gets older, there will be probably be more isolation, less acceptance at the hands of his typical peers.  Or not. Perhaps our fears are as unfounded as our initial ones.  One can only hope.  If I have any impact at all, I will lessen that separation, even if only a little.

This year has been both the best of times and the worst of times.  So much good has come out of this year.  So much love, so much sharing, so much learning and so much acceptance. Some may say it's a matter of spin.  I would answer that it is a matter of new awareness and growing acceptance. This year may have been riddled with seemingly profound pain, but more importantly we have experienced profound growth.

Yes, our family was forced to fish much deeper water than most, but ah, the sights we have seen...  All from a little chromosome.  All from a little boy.  A little boy that has garnered the amount of enthusiasm generally saved for a Stanley Cup Win, simply for learning to hold his head steady.  For laughing.  For pulling himself into a sit.  Once.  Each new feat is as sweet as the monk's strawberry. You appreciate the effort, you delight in the simplicity, you savour the flavour.
 
These are indeed the best of times.  Yes.

8 comments :

  1. He will not be behind his siblings but ahead of them leading the brave new world of acceptance with blogs like yours (I've read two posts but I KNOW). Plus we have to cure and mitigate early onset Alzheimer's but he will lead the way to independence and driving or whatever his goals are with help from many friends and resources. He will help build his future For him and his friends and we will watch and marvel.

    Optimistic and hopefully after reading YOUR posts. Keep them coming when you can!

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  2. What a great post! So many emotions.

    Right on!

    Be gentle.

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  3. As the parent of a 15 year old with Down syndrome, let me say welcome and congratulations on your new babies. Sounds like they came into the world with a bang! I just wanted to let you know from a few years downline that you're not living in a bubble, you have a great attitude and that attitude will help you experience this kind of parenting as enriching. And, we have been fortunate that our son has not experienced much discrimination and no mistreatment as far as we know. That is really a function of your community, so hopefully you live in a good town. The point is, the things we fear often do not come to pass. Enjoy the holidays and your children - and hopefully a calmer 2012! All the best to you.

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    Replies
    1. Same to you! Thank you for sharing your story!

      Delete

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