The Most Common Rare Syndrome You've Never Heard Of

Wednesday, October 8, 2014

If Only For a Moment--Heather Cole

The first time I peered into the cloudy glass window, through safety bars and clumps of advertising stickers, I froze.  The American bounty of familiar food filled the shelves—Jif peanut butter, snickers candy bars, ruffled potato chips, Keebler  crackers and the like.  I mentally tasted each and every one.  True, thanks to an import business that sprang to life sometime within the seventeen years I had been away from Kenya, obtaining foods similar to those types of American items was now possible.  Even so, the current plethora of food products weren’t from home.  They weren’t the familiar, comforting tastes I knew so well.  And to make matters worse, the store I was salivating over was ONLY for American government employees (VAT free), not run of the mill missionaries from America.  All those delightful, pretty boxes and crinkly packages were off limits to me, no matter what.  And every time I walked by that store my heart… pulled…hard.   We had been living in a rural area for many months, not to mention sleeping in a spider infested back room of another missionary’s home, subject to someone else’s preferences in food.  Imagining me sinking my teeth into a good ol’ Snickers bar sounded absolutely blissful.

It has been three years since the birth of my son with NS.  As with so many other families the entire first year, and well into the end of the second year, was wrought with extreme sleep deprivation, high anxiety levels, endless hospitalizations, procedures, doctors and emergency visits.  Putting it lightly, there wasn’t a day gone by that didn’t bring something new-- usually unwelcome.  My world spun around a little boy and all his needs, barely making room for two big sisters and a dad always waiting in the wings for any crumb of attention they could sop up.  And spreading all the love around never really felt possible.  In truth Rhyse did get 90% of the attention in those two years, and I can only hope that I haven’t permanently wounded any little psyches because of it.  A ‘normal’ day couldn’t even be contrived.  But I am so thankful for the word, “grace.”  If it weren’t for grace from all family members to allow me to throw my attentions where it was demanded most, everyday life would have been a whole lot harder.

As I lay in bed last night thinking about the past three years, beginning October 17th, 2011, I saw a picture of myself in front of that ex-pat store.  And I realized how much that symbolized where we are today, and where we will always be.  

As parents we don’t see our children as labels, but on paper labels do exist: Leah, the adopted daughter, Leah the moderately cognitively impaired daughter, and Rhyse the son with Noonan Syndrome.   And these labels, even though they aren’t worn around like name-brand symbols on t-shirts and tennis shoes, they do change the dynamics within a family.  And I can say for me that so much like those can’t have  --don’t even think about it—you have no right to them American foods I salivated over every single time, living life as if there were no cognitive impairments, or medical complexities and surprises just doesn’t exist: it isn’t attainable.  And every once in a while I do peer into a world where I don’t have to worry about my daughter’s sustainable future, nor live on the edge of a medical crises, or learn of yet another diagnosis, or be sent to another specialist: that world is out of reach. So I stand and squish my face up against an invisible, dirty window at a more ‘typical’ family—if just for a brief moment.  And then I walk away knowing my life is full, no matter what. I'm happy to say my heart is NOT tormented. And though I would truly make the CI diagnosis and NS diagnosis go away if I could, I don’t for a second lament their labels.  It's totally normal to "check out the other side of the fence" occasionally, and it's OK! And like any other parent in the world, I wish all three of my children safety in school, protection from bullies, success in whatever their hearts desire both now and in their futures, and fulfillment from the inside out!

Heather and Jon are parents to Leah (11), Maggey(8) and Rhyse(3), residing in Allendale, Michigan. Heather is a stay at home mom who enjoys blogging when she has a spare moment at Life Journeys and Such.  Jon works for a local manufacturing company.  


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