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.
DISCLAIMER:
The article above was written by a guest blogger. The opinions and ideas written belong solely to the guest blogger. Noonan Syndrome Foundation DOES NOT endorse political candidates and religion or religious preferences.
This blog is provided for moral support purposes only. This blog is not a substitute in any way for medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have learned from this blog.
The Foundation does not recommend or endorse any specific tests, treatments, physicians, products, procedures, opinions or other information that may be mentioned in this blog. Reliance on any information provided by the Foundation, Foundation volunteers, staff or guest blogger/s is solely at your own risk. You should not rely on information you receive from or through the blog for any personal, medical or health decision, but should consult with a qualified professional for specific information suited to your family member’s case.
