October 1, 2016
Today marks the first day of October, the first day of the blog challenge:
31 for 21! It also marks the tenth anniversary of folks blogging for the
month to bring awareness. For me, this is my fourth year, my sweet boy is
only 6, so you know, I am a bit late to the game. Who knows if I will
make it to the big Ten... choosing to get to Day One of my fourth year was
pretty big for me as it is. As the struggle continues to find ways to
integrate our loved ones with Down syndrome into this somewhat crazy and often
times really cruel world, some of take up the challenge to write a blog every
day for a month. Apparently that crazy that runs rampant in the world is
also a wee bit crazy running through me.
Now, it's not hard to come up with topics, it's not hard to come up with the
writing really, mostly that part is the part that flows freely. Often the
flow resembles roaring rapids that takes us all on a wild ride that definitely
doesn't miss the rocks. The hard part I think for me, is always
finding the time to squeeze it all in. I am not the short and sweet
type...well...at least not in writing. I am truth not all that tall and
some would say I am sweet, and some who know me would use terms like sarcasm,
which is quite sweet in some circles I believe. But that doesn't matter
so much... well, maybe a little. Anyway, the true key for me is the
amount of information and the way that I try to convey that information.
I backed out of writing for almost a year. I was muted by a strange
conversation I had with a fellow mom with a child with special needs and an
extra chromosome. I realized something that day that I really had to
learn to come to terms with, and still I struggle with it. Our story is
not the story that would encourage a family that is getting a pre-natal
diagnosis of Trisomy 21. My son is not
the healthiest kid and his story is enough to terrify the usual parent. I have always known that in the moments that
someone leaves, they have their thoughts: “He’s so cute, thank God it isn’t us.” I’d considered being angry or offended for
like a split second when I realized this is probably what most people think…then
I laughed at myself. Why bother, I’ve
been there. I’ve had those thoughts in
another lifetime. I felt certain the
Lord would not give us a child that needed a lot of medical needs because we
were not a rich family. At one income
while overseas, I couldn’t fathom how we could support the needs of a child
that wasn’t all that healthy. That’s why
we will be responsible and only have our two girls and not try for a third
child…oh, wait… hey kids, sometimes birth control fails. And sometimes you help God create a beautiful
little miracle that comes in a bundle of blue, and down the road you will learn
that the extra chromosome he brought with him will bring some medical issues…we’ll
be tongue in cheek here and just call them challenges. Wink, wink, nudge, nudge…
So where does this leave me? Silent, actually. You see once I realized that I could live
with not being the welcome wagon family, I had terrible moments when I read
about a UK couple that had a pre-natal diagnosis and after researching, they
read about a family with a child that had heart issues and decided to abort the
pregnancy because they didn’t want those kind of potential challenges. Challenges again: wink, wink, nudge…never
mind…you get the idea. I felt silenced,
what if someone read what I wrote and used that to make up their mind to end
their pregnancy, all because my little guy has a really terrible GI
system? Hmmm. I then considered my readership, all five of
you…relaxed quite a bit. ;-) Nothing like keeping life in
perspective!
Seriously though, know this. Always I
will choose Bradley. I know the risks
that he faces, I know that his life is not easy and that he will challenge us
medically in the near future not just in the long term. I know that keeping him here and keeping him
in a good life are the challenges for us. I know this.
And I have no choice but to accept this.
And I also know this: Bradley is unique.
From the way he learns, the way he grows, the way he lives, and every
medical issue about him. Other kids may
have similarities, but no one is like him.
He doesn’t have heart issues, some do and the problem, while terrifying
all the way to the bone marrow – is also more survivable today than ever, and
most are lucky enough to go on and live healthy lives. Gastro issues, Leukemia…all the terrifying
buzzwords that we know and watch out for, always on guard for all these
terrible things, what a way to live right?
But didn’t we already? When we become
parents we accept the grab bag of worry that comes with it. When our child comes out healthy and typical,
we sigh with relief and push that bag aside.
And then when our child comes down with some terrifying disease or some
tough GI issues, we struggle to comprehend and get through it all. I know people who have panic attacks when
their kid gets their tonsils out. Good
for you, you dodged a bunch of bullets to get you through until you have to
have your kid put out for tonsil removal.
Guess what, you’re terrified, and in that moment we are the same –
rowing the same boat. When it comes down
to it, you get blindsided a Hell of a lot more than I do. I know what can be, I know what can happen,
and while it may suck…I am researching and learning and I am watching and I am
preparing. Why? So that when the shoe drops, I won’t.
My wish is the same as any other parent’s: I wish my son didn’t get
sick. I wish my little guy would never
again be sedated, pricked by a needle or spend another moment in a
hospital. I don’t wish my son didn’t
have an extra chromosome. His extra
chromosome is the easy part, the non-essential in our life that is more
footnote than anything. Oh yeah, we have
an extra chromosome in our house, almost forgot. I suppose we could talk functioning, I
suppose we can talk about the days when he doesn’t make his goals and we have
to have meetings to talk about it. I
suppose, those aren’t easy days. But
neither are the days when his fourteen year old sister falls into a vat of
political bullshit that overwhelms her and drops her off the Volleyball team,
understanding and explaining that…damn near impossible. And the day you have to help each girl
understand that life goes on even under the dark cloud of best friend betrayal…there
is nothing harder to see than your child in pain: physical or emotional.
I guess if you are someone who fell here by accident and chose to read on
while you make your decision, all I can say is this: The extra chromosome is
only frightening until your baby gets here, or the surprise wears off. There is more love in one look that your
child holds with you than you will ever know again. Every child is a gamble; you never know what
he or she will bring. But the journey is
the best part; it’s the view along the way that makes the trip worth
taking. Maybe your child won’t be in the
NFL, or a Rockstar, or a Nuclear Physicist… and those are the ones with no
extra chromosomes. The odds say they won’t
be, but we love them anyway. Maybe
raising happy children that contribute to society in some positive way is the
best outcome, and guess what – an extra chromosome doesn’t mean they will or
won’t. How great your kid turns out is
entirely on you as a parent, how you treat them and love them. Don’t be afraid, right…truth is we’re all
afraid. Maybe this is better: do not let
fear rule your life, accept that there are parts of your life that will bring
you fear, acknowledged. But there will
also be a lot of love. Loving someone as
much as I love my son can be terrifying.
Loving my girls and my husband as much as I love them is just as
terrifying. Great love leaves you open
to great loss…but the love is worth it.
No matter what, loving this family is the easiest thing I have ever done
and the greatest gamble I have ever risked.
I will roll this dice every day for the rest of my life. Be the person your child believes you to be
and love them for who they are: typical, weird, goofy, extra chromosome or
not.
October is Down syndrome Awareness Month.
The life you get may not be the life you asked for…but sometimes the
best answers are for the questions you were afraid to ask.
So here we go. Day One in the books. Journey with me for the next little while, who knows we all might learn something new!
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