Tuesday, August 16, 2011

Tempus Fugit

I am absolutely gobsmacked.

I cannot believe that they are 6 months old today.  Six months.  Time used to be my friend.  Then, one day, I caught her whispering about me behind my back...  Then things got awkward.  Now, we pass like strangers, no longer making eye contact and no longer on speaking terms.

Six months ago today our world was officially turned on its ear.   Six months ago Wyatt decided that he was making a break for it and dragged Zoe, kicking and screaming, into this world.  She hasn't stopped doing either since.

Six months ago I made a decision.  As I lay there after my surgery, in pain and missing the familiar movements in my belly (that were now living in the NICU), I told myself that no matter what the outcome, I would fight for my son.  Make no mistake, I would fight to the death for Quinn and Zoe as well;  when it comes to my children I am like any other Mama bear.  This is different.  I did not know at that time the full extent of Wyatt's heart issues.  I did not know what other characteristics, hard markers or physical deformities that he may or may not have.  I knew that he had Down syndrome and that he was my son.  My grief was so raw then I could barely draw breath.  As the clock ticked away the eternity between me and my pain meds, I made my plan.  I made a promise to my kids and I prayed.  Alone and in the dark, I prayed to whoever was listening to give me the strength to see through what I had to do. 

I would ensure that he (and his sister) had exceptional medical care. I would ensure that he had a loving home and was surrounded by positive, supportive people.  I would do my best to make sure that he had anything and everything that I could give him:  everything ranging from love and support to antibodies and DHA.  He would have all the encouragement that he needed;  we would make sure that he would be the best he could be.

It also meant learning everything there was to know about his "little extra" and what that would mean for him.  What that would mean for us.  What that would mean for his older brother who was not just displaced by a new baby, but two... and one with a disability.  What that would mean for his twin, the only girl in the family.

We would all have to overcome obstacles.  Our own prejudices.  We would have to change our way of thinking in order to fully open our minds to this little boy.  That would also mean distancing ourselves from anyone who was not fully accepting of any of us, not just Wyatt.

I also had just over six months to do this in, partially due to my return to work, but also because of Wyatt's surgery that was supposed to take place around this time.

I look at my son now and I am so very thankful that his heart decided to do a little DIY and essentially occlude the bottom of the AVSD.  He is still cool to the touch and more tired than his sister, but thus far we have been spared the heartache that the onset of congestive heart failure would have brought.  I try and imagine what it would be like for my tiny boy to be in the hospital, fighting for breath, waiting for the surgeons... and cannot.  Thankfully, I cannot.  I am so thankful to the powers at be, the positive thought, the fates, the gods, destiny, the universe, his mothers love, karma... or whatever it was that closed that hole when the experts said it wouldn't.   I used to joke that Karma owed me big time; I'm willing to consider us even.
 
Now, the time has gone and the countdown to my return to work is marching on.   We've met many goals and in some aspects, more so.  Wyatt and Zoe have done exceptionally well in this time;  Wyatt has had his surgery pushed back until he is 3 or 4 and Zoe had an unexpected hernia repair but has totally bounced back since then.  They are still small, but are slowly catching up to their peers.

Quiet Twins
They, and we, have come such a long way...

The next six months will see more challenges;  me trying to balance work and breastfeeding, Sean adapting to life at home, introducing solids to the babies, them learning to sit up and crawl... and so much more. 

On this night, six months ago, reaching this point seemed impossible.  The idea of a future where things became routine, almost commonplace with our family seemed ridiculous.  In my fever and pain, it seemed a distant dream.  Yet we are here.  Together.  Going about our day, much like other families.  The world did not end, I have healed and Wyatt is a healthy happy boy that today of all days, decided to smile spontaneously.  All day.  Non stop.

I am completely and utterly in awe of my life. In that life is a little boy with Down syndrome that has taught me more about living in the six months that he has been on this earth than I learned in the 39 years and two months that preceded it.  In his smile.  In his breathing.  In his little bean bag body that snuggles into my chest.  In the little hand that traces across my arm.  Our time together, however long or short, will not tick idly by.  It's already been six months.  Look how far we've come.


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4 comments :

  1. It has been equally inspiring on this side of the internet. Once again, thanks Jen (and family)xx

    ReplyDelete
  2. Just found your blog today. Have read several of your posts and recognize a lot. Will read more later. Thanks for sharing your story.
    I have 3 girls, my 3.5 month old daughter has DS. She will probably need surgery in a few months for her VSD. Other than that she is doing well...
    Wishing you all the best when you go back to work!

    ReplyDelete
    Replies
    1. Thanks so much! I'm hoping all went well for her surgery.

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