Saturday, May 11, 2013

I like grey.

I've been reminiscing recently- it's been nearly a year since Wyatt was in room 8 on 3F, our second home, at A.I. duPont Hospital for Children. That day in June he, and all his equipment, was carefully and strategically moved onto a transport bed. I became nervous as they discussed what would happen if he began to die en-route to our home. They loaded him into the ambulance, I climbed into the front passenger seat and held back tears as we drove away from the hospital that we've come to feel so comfortable in through the years. We arrived home from the hospital a little more than an hour later, for what we believed would be the last time. Can you believe it? Almost a year.

Clearly this year has yet to play out like we thought- which is difficult to wrap our brains around some days. I remember last July emailing Dr. R feeling confused as to why this process wasn't happening like we all thought, feeling awful for questioning it, but wanting to know if he saw it too before getting my hopes up too high. It's now May 2013, which means July is not that far away. July 23rd will be our boy's 11th birthday. We are closing in on his 11th birthday when we didn't expect him to make it to his 10th! A miracle. A blessing. It could be considered both of those things. I do know it's unexpected, unimaginable, unexplainable and so amazing all tucked into one really cool kid. He knows he's proving us all wrong! He's proof of his own words- "anything is possible!"

I'm unable to put into words the actual feelings we've experienced within this year- it's been so different than any other. The highest of highs to the lowest of lows. But I can say it's been the richest year for our family. The actual hospital life that encompassed our daily lives was put aside. We left the hospital in June not expecting to return with our son. We have returned for visits, but not to stay. Though we dearly miss those that we came to know and looked forward to seeing, we have come to accept that they can no longer help our son with medical interventions. We're doing everything here, at home, that they would be doing there. And we have such respect for the honesty and love that was shown to us. It's not easy as parents to hear the news that your child is dying, but know it must also be very hard to come to the decision and deliver that news too. I trust his team more now than I've let myself trust any other doctors. And that's been life changing for me. I'm not sure he realizes it (or maybe he does), Dr. R has changed our family's life. He's changed my life, as Wyatt's Mother. And hospice has given us the ability to be together, to do "this" as we carry on as a family. Are they all perfect? No. Do I get frustrated with each of them at times? Oh, yes. And I'm sure the feeling is mutual occasionally. But I don't believe there is any better team for our son.

This year Wyatt's care was centered around comfort and quality of life. The worry of what was to come faded away, as we now know. This year he has been living on the brink of death- the questions don't linger overhead anymore. My focus began to shift to making memories, to fully embracing a moment, and not repeatedly swallowed up by medical research, advances and terminology. Wyatt's body is much like a puzzle, one that is missing a few key unsolvable puzzle. In 10 years he has made me second guess everything I've ever learned, everything I ever thought I knew. I emailed a similar sentiment to Dr. R and I received a simple reply back: "You and me both." So, at least I know I'm not alone.

Living in the moment has been taken to a new level- there has been more than a few times that I've said out loud "His heart is beating, he looks comfortable- we're doing good!" The thought, 'it is what it is' sums up a lot.

Oh goodness, and let me tell you, this year Bryan and I have become uninhibited, having no shame, completely silly and ridiculous even, just to get our son to relax, smile and laugh. There have been times we succeed so well in our antics that he laughs so much his oxygen levels drop and his alarms start blaring. And then Bryan begins his "victory dance", which makes Wyatt laugh a little more (You should ask Bryan to show you sometime.)

Quietly singing a fake song, in our own phony "french" words, in a key that one of us should not be singing, in the middle of the Ophthalmology clinic of the children's hospital is not beneath us desperate parents hoping to lighten our son's mood. It did happen- I can't deny it! (The door to our exam room was closed, at least!) Being in the moment and not caring what the people on the other side of the door, the wall or building was thinking when hearing us sing our fake song in our made up language- those are the moments I actually love. Happy to be able to sit in that exam room with our boy, with the feeling of being carefree when our life is anything but, just to see his shoulders relax and hear him try to hold back a laugh. We now just might be as crazy as we seem!

In some ways knowing and accepting what his future holds and what our family is facing has been freeing. It's difficult not to feel the need to cram in a lifetime of experiences in an unpredictable amount of time, but really just being together feels perfect, complete, right where we are all supposed to be. Some of the most simple moments of hanging out in the living room watching a TV show together can be the most comforting. We have found a "normal" and even happiness (at times) in spite of the difficult circumstances. We've learned a different way of life this year. And though it may not be desirable, it's one we can call our own. And it's been so special in so many ways.

 I've learned very little is black and white- thankfully, I like the color grey.
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  1. Have I said it before?

    Straight to the heart

    the words you write
    the care you show
    the hope you live
    the Wyatt you love

    all of it

    straight to the heart

    and straight from the heart


    xoxo CiM

  2. Happy Mother's Day!
    You seem to be the TRUE definition of "MOM".
    Please know you have people out there that are hoping for many more happy days for you and your family.