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, 
 Claire









26 comments:

  1. Really well-written, Claire! Thanks for sharing your thoughts so eloquently! (And I love the pictures of you and brothers!)

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    1. Thank you so much! Your comments have encouraged me so much.

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  2. This gave me chills. I completely and one hundred percent agree with you. In my case, I am the "special needs" sibling, but my two brothers have a story to tell as well. EVERYONE has a story. Everyone. Thank you for speaking up...you are amazing. xoxo

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    1. Thank you for being so encouraging of my writing. It means so much to me!!

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  3. As a fellow Sib, I just want to say thank you. You really summed it up beautifully. I also read the article that you quoted, and shook my head because to be honest no one can speak for our experience except us. This was a great response.

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    1. Thank you so much for visiting my blog, and for your comment!!

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  4. As a fellow sib, I can't even express how much every single thing you said resonated with me, and I agree with you completely. I've tried to write about being a sib and I have a little bit, but it does take a lot out of me. As hard as it must have been, thank you for adding your voice.

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    1. Thank YOU for your words of encouragement. I appreciate this so much! If you do share your story someday I would love to read it.

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  5. Thank you, Claire! I am a fellow sib and I read the article your blog is referring to yesterday and I felt the same way you did. I felt so much anger at the mother who wrote it and I wanted to cry for that little boy who was going grow up with his emotional needs being discounted and neglected. I also wanted to respond to this mother...I wanted my voice to be heard and to stand up for her little boy. I loved what you wrote about it! Thank you so much for sharing it!

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    1. Thank you so much for commenting! I love all these comments from fellow siblings...y'all bless my heart!! I'm so thankful to belong to these ranks of incredible people.

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  6. You are a blessing to so many. Thank you for being brave and having a voice and an opinion. Your family is so blessed by you.

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    1. Thank you so much for your words of encouragement!!

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  7. This was beautiful, Claire! My family is so blessed by Susannah and, soon to be, JJ. Disabilities or not, my siblings are beautiful. And I am not one of the 'other sibs', either. Even though I wasn't born with mine, I have a disability and Susi and I actually have similar scars on our backs from spinal surgeries. Anyway, I appreciated this. And the pictures made me smile. Y'all still, look the same, too! Thanks for sharing..xDD

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    1. Thank you so much, Savannah!! I really appreciate your comment!!

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  8. I agree. This post describes a lot of my feelings over the years.
    You should really share this with the woman who wrote the original blog post. I read her post as well, and I think she might not yet know how to breach that subject with her children. That little boy needs to know that he is not alone. I'm glad you posted this. He might stumble upon it someday. (:

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    1. Thank you so much for your comment--I appreciate it so much!! I have been seriously considering sharing it with her. It is a sweet thought to think that little boy might stumble upon this, isn't it?

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  9. What a lovely post, Claire! So heartfelt and eloquent! These pictures are so sweet, too... thanks for sharing them and your voice. If Sabrina had a sibling, I'd want her to be as compassionate and beautiful (both inside & out) as you!

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    1. Thank you so much for your kind encouragement, Stephanie!! Your comments are always so heartfelt and kind they move me to tears. I'm so thankful for you and your friendship!!

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  10. My husband's brother has autism. And, on his behalf (he doesn't do things online) I want to say: Thank you thank you thank you.

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    1. I can't even tell you how much this comment means to me. Thank YOU and your husband so much!

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  11. As a sib myself I have never heard anyone say that I am my brother's sister for a reason...wow that line really touched my heart! Thank you for sharing your thoughts

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    1. It is the absolute truth, my friend! Thank you so much for your comment--it meant a lot to me.

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  12. Claire, I really appreciate your blog about being the sibling of children with special needs. My older son was born with a perfect heart but his little brother was born with a very serious, life-threatening heart defect. The first book I wrote was about my younger son's heart defect. The second book was called, "My Brother Needs an Operation" -- because I saw how much Joey was affected by Alex's condition. It is now 19 years later and I'm the Host of a new Internet talk radio show on VoiceAmerica. I'm about to tape Episode #4 -- Siblings in the Congenital Heart Defect Community and while your experience is with cerebral palsy, I believe your feelings completely mirror those of the siblings I'll be interviewing. Nice job on your blog. Keep up the good work!

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    1. Thank you so much for your comment! I am so glad you were able to write books about both of your amazing children. I will be tuning in to your radio show from now on!

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  13. Oh my precious friend, I adore you. You are SO special and I don't know a single person who doesn't think so. You amaze me daily with your cheerful spirit and your love for serving your family. And I'm sure your family would agree with me. You truly inspire me; I could never be the incredibly godly sister you are!! I pray that someday I might be more like you. I just love your entire family so much!!!! <3

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    1. Oh, Bethany, you are so kind. Thank you so much for reading my blog and leaving your encouragement. You should know, though, that I still fight with my brothers and almost never meet my goals for "being a great sister".
      I want to be like you, dear friend!!

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