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Bee-worthy Share: Siblings

Posted Jan 28 2013 11:22am


I'm sure I've written here about this before, it's always been a huge concern of mine. Brayden has two older sisters. They were 3 and 6 years old when he was born and diagnosed with hydranencephaly... we have often been criticized for being so open about his prognosis with them, they knew everything that was going on every step of the way. People have told us they don't need to know the details, that they didn't need to know will one day die. How else would you recommend handling a situation where you are told to take your child home from the hospital to die in days? We got 4 years and nearly 5 months of joy. We have no regrets...


Siblings of children with complex medical conditions have a rare set of challenges themselves... oftentimes overlooked. My girls have encountered they same nasty looks and comments that I have as a parent. They have most often showed greater strength than I have in those situations... they have come out on the "other" side, remarkable little ladies.

From those challenges come a greater breed of individual... one that is more caring, compassionate, loving, and accepting. 

Our friend Jo Ashline at " Sweet Dose of Truth " wrote about this very topic a couple days ago. While her son is on the autism spectrum, the relation still rings true
No Pity Parties Please for My Son and His Special Needs Brother
by JO on JANUARY 26, 2013

He hasn’t heard the words yet

but I have.

“I feel so sorry for him,” they’ve said,

right to my face,

their tones casual, as if they’ve just announced their coffee is stale instead of making unsolicited assertions about the well-being of my youngest son Ian.

He hasn’t seen the pity in their eyes, too busy living the over scheduled, exciting life of a 9-year-old boy,

but I have.

It fills their pupils as they watch him interact with his autistic brother, watch him guide him gently across the playground, redirect him in the store, protect him from dangers invisible to their untrained eyes.

But if they knew what I know,  if they saw what I saw, if they felt what he feels for his older brother Andrew, they would not feel sorry for him.

They would feel envy and wonder how it was they never had the opportunity to experience that kind of relationship for themselves.

Brothers.

Theirs is a love unblemished by society’s expectations of what siblings are supposed to be for one another.

Theirs is a bond that was birthed from instinct, and built on trust, and turned into something bigger and brighter than I could ever attempt to describe.

As individuals they are unique, amazing human beings.

Together they shine pure and true and I can just imagine what the moon and the sun must think when they look down, only to be blinded by the light their love creates.

I worry about them both,

my sons.

I worry about them for different reasons, sometimes in different ways.

Ian, with a heart of a lion.

Andrew, with the innocence of a lamb.

I worry about the typical things a mother worries about, and then I worry about the things only a parent of a child with special needs would understand.

But the one thing I will never, ever have to worry about is whether or not they love each other, whether or not they were destined to be together, whether or not one deserves to be pitied because of the other.

Siblings of special needs kids have a unique set of circumstances and challenges to say the least, but their lives are also filled with the kind of experiences and expressions of love that exemplify what human nature could look like if we all stood still long enough to give a damn about someone other than ourselves.

I’m not trying to sugarcoat it or throw confetti in an attempt to camouflage the realities they both live with.

But I’m tired of those pity parties no one asks permission to throw my younger son, parties I will inevitably have to clean up after when he finally catches on that people think his brother is a burden.

They’re brothers; chosen by Chance, Fate, The Good Lord Himself (it really doesn’t matter to me).

They fight.

They share.

They laugh.

They’ve even been known to bug the crap out of one another on several occasions.

They do all of these things and more and I’m often left laughing and crying and blowing snot bubbles out of my nose when I’m in their presence.

Mostly though, I’m left thinking that I’m the luckiest mom in the world and that the most important job I have is to make sure I don’t do anything to screw either one of them up.

And if I ever catch myself wondering if it could possibly get any better between them, all I have to do is watch this video of Spencer Timme and his autistic brother Mitchel, because these brothers are my boys ten years from now.

Seems to me, the best is yet to come.
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