Saturday, October 1, 2016

Happy Ten Years 31 For 21 Blog Challenge!!!

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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