My 14 year old son was in surgery in a third attempt to correct a 3.3 cm leg length discrepancy when I felt inspired to write this tribute. Neurofibromatosis is the cause of his asymmetry and what makes him a very brave young man who continues to make me a better person every day just by being him.
When you were little you asked me what the spots on your skin
were. You wanted to know why I didn't have them too. I told you that they were
angel kisses and that only the most special people have the kind that stay.
You didn't walk or talk when other kids your age did, but I
always said that you just didn't have anywhere to go or anything to say.
Learning wasn't as easy for you, but that didn't matter because
you always worked twice as hard anyway. Success is always sweeter when it is
earned through sweat and tears and this fact never deterred you.
The doctor visits began early in your life and there have been
many. You've been poked, scoped, imaged, scanned, tested, evaluated,
re-evaluated, cut, stitched, observed, medicated, dilated, screened, diagnosed,
analyzed, aspirated, examined, and treated, but you never once fussed or
complained about it, even though you had every right to.
You learned words ending in "ology,"
"trist," and "ometry" even before you could recite your
ABC's and you knew how to advocate for yourself before you could tie your
shoes. You could even teach some of the "professionals" a few things
about NF!
You've had numerous long car rides and even some plane trips to
get to the professionals who have expertise with this disorder. You treat each
one like a new adventure. You even agreed to be in a study which exposed you to
further evaluation, poking and treatment because you knew that even though you
wouldn't benefit immediately, it would help others like you eventually. Your
wisdom never ceases to astound me.
Your confidence in yourself and in God’s plan has taught me many
lessons about life. I watch you playing ball with kids who weren't born with
the same challenges you were and you have a smile that stretches from ear to
ear. I sometimes worried that other kids would tease you because you didn't
have their skills or coordination, but in the end, your attitude and
persistence made you their hero too.
The teachers, aides and therapists who have been in your life,
almost as long as you have been in mine, all bond with you and form a
connection to you that lasts long after their services end. In our conferences
they will say, "Jesse is such a pleasure..., Jesse is a joy to
have...". They don't have to tell me what I already know, but I'm so glad
they do.
When people pity you for your situation, you say that there are
others with much worse situations and I have to swallow the hard lump that has
formed in my throat. When I share stories with you about the kids with NF who
are undergoing cancer treatments and amputations, you never worry that will
happen to you too; you just ask how we can help them.
Your way of thinking inspires me to do whatever I can to help
solve the NF puzzle. Not long after your diagnosis, I put a blue silicone
bracelet on my wrist and I've since never taken it off. It doesn't matter that
it doesn't match my formal gown, so long as one person asks me what it means.
Every time that happens, I've made one more person aware of Neurofibromatosis
and I've opened one more mind to the idea of a cure.
Fundraising has become my purpose. Every dollar I earn for NF
research gives me an ounce more of hope that a cure will be found in your
lifetime. At our first Walk for NF I made ribbons for everyone on your team to
wear. When I asked you to wear one you smiled and said, "I wear my ribbon
every day." And you do, but not for pity or recognition. You wear your NF
because you don't have a choice, but you don't ever let it wear you.
And that is why you are my hero.
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