Friday, October 18, 2013

Adding my voice

Dear Readers,

There are many blog posts, news articles, and books about special needs. My heart resonates with many of these articles. In fact, most of the blogs I follow are written by someone affected by disability. 

Yesterday, however, I read a blog post that my heart did not resonate with. It was written by a mother who has two sons, one of whom has Down Syndrome. She has recently published a book on her parenting journey with this child, and her other son asked if she would ever write one about him. She was quite frank that she would not be writing a book about her other child. Why? This is the reason she gave: 

So far, he has hit all the usual milestones. He makes friends easily, has quirky interests and is successful in school. I think he’s brilliant, charming and special. I also know that none of this makes for very good reading. The fact of the matter is that it is unlikely his turn will ever come. (source) (I took out the little boy's name to respect their privacy)

I completely understand her reasoning. Completely. I even agreed with some other points she made in her article. But as the 'other' sibling, the one without special needs, this paragraph hurt. More than that, her words made me want to cry. 

I want to cry for all  the typical siblings out there who think their story "doesn't make for very good reading". I want to cry because her words cut at some of my own insecurities. When I was little I felt as if I wasn't 'special' because I didn't have CP. Does that little boy feel 'not special' because he won't have a book written about him? 

Her words also made me want to write. I don't write much about this sibling thing, because, quite frankly, it's hard. It would be much easier to just not write about it. But if I don't share my own story, how can I prove to other siblings that their story is worth being told? I can't. 

So here I am.

First of all, this writer is wrong. Her other son's story is very much worth being told. His own personal journey with disability is something others could benefit from hearing. Brothers and sisters are affected by their sibling's disability just as much as parents are. 

But there are many other experiences, questions, and fears that come just with being the sibling.

"Why do I not have Cerebral Palsy?"  
I've left the hospital and cried because all I want is my mom back home with us. And then I've cried some more for how selfish I'm being when she needs to be in the hospital with my brother. 

Do you see what I'm trying to say? We are walking this journey right alongside our siblings and parents. 
We come out of those surgeries and struggles with our families. When our siblings come out from surgery able to sit up straighter or walk longer, we come out changed, too. 

Just as we share in the fears and questions, we share in the joy, as well. 

Those who abandon ship the first time it enters a storm miss the calm beyond. And the rougher the storms weathered together, the deeper and stronger real love grows. ~Ruth Bell Graham

We know what real, strong love is because that is the love we have for our families. Often we feel a fierce protectiveness for our siblings, whether we show it or not.

Our stories are worth being told simply because they are ours. A sibling doesn't have to go on to win the Nobel Peace Prize, or find a cure for their sibling's disability, for their story to deserve being told. 

Dear siblings, please know you are so so special. Please know that your story is a beautiful one that the whole world needs to hear. And please never be ashamed of who you are, because you are perfect, and made just the way God intended you to be. 

Your life touches the life of your special needs sibling just as much as their life touches yours. You are their sibling for a reason. 

L to R: Me, Mason, Benjamin

When I got up, they fell over...:)

I wrote this post because I didn't want my voice to go unheard. I wrote it because I needed to hug that little boy who won't ever be getting a book written about him, but couldn't, so this is as close as I'll get. I guess I just wanted to convince you that his story, and therefore my story, are worth being told.

Thank you, kind Readers, for sticking with me to the end of this long post. Please know that YOUR story, whatever it may be, is worth being told. 

Your blogger,