I think that’s a pretty good analogy
for my life right now – living in two places at once. On one hand, our life can seem pretty “normal”
to most folks. Just glancing at the
surface, you may not notice anything out of the ordinary. The standard family of four – mom, dad, two
kids. Sometimes, I can almost forget it
myself. We’ve found our new normal,
developed our routines, adjusted our lives to meet the cards we’ve been dealt.
However, it doesn’t take much for us
to be suddenly be jerked back to reality.
Every holiday or special occasion really – because they always revolve
around food. The look on his face when
nearly every gift he received at a party was something he couldn’t eat. Any overnight event – because most kids don’t
have to take along an assortment of medications, bags of their own food, and
various other items needed to survive time away from home. And if we’re all gone more than one night,
you better not forget to check “the list” or you’re sure to forget something
extremely important that can’t be picked up last minute at your local
supermarket. (I can’t even imagine what
will happen if I ever have to get it all onto an airplane!) Then, there are the common, everyday illnesses
that always have the possibility of putting one of them in the hospital. Will there come a time when her body decides
not to bounce back?
And there are other affairs –
concerts, recitals, awards ceremonies, field days, and the list goes on. Will this be the moment that the other kids
notice? Will this be the time someone
says something unkind and breaks their fragile little hearts forever?
A few weeks ago in Sunday School, our
lesson started out with this question:
When have you felt like you belonged?
While I never shared my answers aloud, there were several moments that
came to mind. At the top of the list are
Magic Moments Family Camp and Give Kids the World. That’s because while we generally manage to
travel undetected in the population often referred to as “general” or “normal,”
the kids’ long-term health issues also identify us with the world labeled as “special
needs.” And honestly, this is where I
generally feel most at ease, most at home.
It’s when we’re with this group that
we don’t have to explain the tubes, the gait disturbances, the special foods,
the medications, and need to stop a while to give your body time to
recover. Staring eyes are filled with
understanding and love. If your child
becomes irritable or difficult to manage, they don’t automatically assume he or
she is a behavior problem and just throwing a fit. Because they know - they really know. Because they’ve been there too. And while our lives and situations are all
very different, there is a common pain, a common loss, and common understanding
that the other side of our life - the “normal” side - may never get.
All of this reminds me of another
struggle, a spiritual one. While my body
is here on earth, my spirit longs for the day when I will take residence in my
eternal home. Until then, I have one
foot here on earth and another standing on His promises (2 Corinthians 5). Because only then will my soul be at
rest. Only then will I feel completely
accepted, completely at peace. No more
struggles, no more tears, no more pain, no more “normal,” no more “special.” Just an eternity with my Savior.
“For now we see through a glass, darkly; but
then face to face: now I know in part; but then shall I know even as also I am
known.” I Corinthians 13:12.
Thank you for sharing Janel. I pray for you often and understand so much more about feeling out of place now that I am a bereaved parent. You have done a wonderful job of helping your family participate as fully as possible in "normal" life--but I too, long for the day when we will be free of all constraints and comparisons.
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