Saturday, November 9, 2013

Just Admit It: The Thing we "Don't Talk About"

The Dress that I didn't Know She'd Wear
Today's assignment for WEGO Health's National Health Blog Month 30 Day Challenge is to "write about something that people do but don't like to talk about or won't admit doing."  My spin on this topic is that there is a question that people hate to ask when they learn our daughter has WAGR/11p Deletion Syndrome, but we know that it's the proverbial "elephant in the room."  What is Evie's life expectancy?

I'll answer that right upfront so I don't prolong the anxiety any longer than necessary.  We don't know.  WAGR/11p Deletion Syndrome  hasn't been "around" long enough to know that, and there aren't enough cases to provide a statistically significant answer.  I CAN say that we know of people with WAGR who have lived into their 40's.  And, I can say that with continued awareness and research we will see that life expectancy grow, just as it did with Down Syndrome. 

But I'll share today the feelings and thoughts that I personally experienced when Evie was diagnosed with WAGR.  We had been given a cute little 18-24 month sized dress with matching hat when Evie was born.  It was brilliant gift, because we know that one receives lots of newborn to 6-9 month items at the birth of the baby.  I loved that dress; but when we got the WAGR diagnosis and began reading about cancer and kidney failure, I thought to myself, "Will I ever see my daughter wear this dress?" 

We found the International WAGR Syndrome Association on-line ( through our wonderful general practitioner.  When I finally got the courage to sign up for the on-line support group, (I just wanted life to be as "normal" as it could be while I was on maternity leave), I was thrilled to receive an e-mail back from Kelly stating, "My daughter Caroline is 22."  Hallelujah; I found a ray of hope.  After joining the support group, and "meeting" all the families; sharing the joys, the frustrations, the heart break, the challenges and the victories, I realized that our diagnosis was the not the end; it was just a beginning. 

Joining the host of families around the world who love and care for their children, their nephews and nieces, their grandchildren with WAGR has been one of the most rewarding experiences of my life.  Each time a new family joins our groups, we each have to face our fears all over again; but what we also are able to share is the overwhelming joy that people with WAGR seem to exude in every smile, every laugh, every dance, and every song they sing.  We have our own language, our own unspoken understanding that we all face the same fears, but we also all face the future together. 

So, admitting that we don't  know how long we have; that doesn't really mean anything to me anymore...we don't know how long ANY of us have.  What matters is how we spend the time that we DO have.  I sometimes spend it in tears of frustration over the number of appointments we have to take Evie to, or over the thoughtless things that some strangers might say.  More often though, I spend my time in awe of how far we have come, what we have experienced (including LITERALLY modern-day miracles like not having a heating bill for two months while Evie was on chemotherapy), and how God continues to bless us THROUGH Evie and WAGR.  It's God's goodness to us that moves me to write, to volunteer, to sing, and to continue to live one day at a time.

For those who know us, they know that we never really stop going.  The question  about life expectancy is likely why.  We will never take one day for granted because we realized that each day is a gift.  As a man once wrote for Carlton Cards (poor guy signed away a gem when he wrote it for a greeting card):

Life is not measured by the number of breaths we take but by the moments that take our breath away

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