Wednesday, June 5, 2019

The Not-So-Normal Life

I got my #9 Spinraza dose last Friday!

I think I've got the formula for successful blood-drawing finally figured out: 1) Drink A LOT of water beforehand, 2) Keep my hand VERY warm (wrapped in a heating pad!), 3) Stay SUPER calm.  It's worked for me the past three times - one-and-done stick, in-and-out in 5 minutes. So if anyone else out there has a lot of trouble in that realm, maybe you can try my formula and see if it works for you!

We're still working on finding the most efficient/least uncomfortable way to dose. I think we figured out the best position for me to be in this time, and we may have found the best size needle to use... though we'll do it all next time and see if it works again. Tenth time is the charm!

I've been thinking about prognoses and predictions lately, especially related to kids with disabilities. It's come up several times in the past week, because people say that now, because of Spinraza, kids have a chance at a "normal life," which kind of makes me sad. Let me explain...

Often a doctor or caseworker or someone "who knows things" says that a child with a diagnosis (like cerebral palsy, spina bifida, Downs syndrome, or SMA) or who has been through horrible, traumatic experiences will "never have a normal life." This news is broken to family very solemnly, usually with sad eyes or a shaking head, like it is a shame and a tragedy. But I want to respond to that by saying, "Amen, and praise God!" Who wants a normal life anyway? Seriously, that sounds so... boring. Why would anyone expect (or even hope) that a child who has faces extraordinary adversity, obstacles, challenges, suffering - pick a word, any word! - will at best move forward in an ordinary way?

These are the people who have the potential to make a dent in the universe!
They have incredible insight, creativity, and resiliency when problems arise. They have the unique super-ability to notice, relate to, and speak into the pain and suffering of others. And they are the ones who can inspire and encourage and challenge those people in the world who are unfortunate enough to be living "a normal life."

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Some quick examples of amazing people who had a challenging childhood are Helen Keller, Nick Vujicic, and Jean Driscoll, Joseph (from Genesis), Malala Yousafzai, and Bruce Wayne... but I'm sure if you think about it for a minute you will think of more, whether from the history books, story books, or your personal life. Imagine what our world would be like without their leadership and influence!

So many people in our world have a backward perspective. They think "normalcy" is a dream to be achieved and suffering is a nightmare to be avoided at all costs. But I know that isn't the way God sees it; every life is valuable and precious to him, and he can take every weak and broken piece and transform them into powerful and beautiful things.

Whether a child ever speaks a word or takes a step, their lives can speak volumes and have a butterfly effect that touches hearts and shakes the world.
Don't despair for the children in your life who endure painful and difficult things; help them to be courageous, strong, and full of hope. Remember - and remind them often - that this is evidence that God has BIG plans for their lives and there is EXTRAORDINARY work he wants to do through them.

And thank God for every child you know who is not "normal."