Thursday, July 25, 2013

The Pain of Disability

One of the hardest things about having a disability isn't the pain that I myself have to endure...it is knowing that I have caused others pain.

Once I overheard my mother sobbing into the phone, "It's not fair....she can't even run." Her tone was wounded, unfamiliar to me, and the pain in her voice was like a slap to the face. I went up to my room and cried into my pillow, wishing that I could somehow take the hurt away. I learned at a young age that not everything can be healed with a pink Barbie Band-Aid.

In another instance, she let slip that there was a time when doctors warned her and my dad that I might not make it. The wounded tone was back. There is an emptiness inside of me every time I think about that, about not being able to experience this world and the incredible gift of life, but even more unimaginable is the anguish of losing a child. It hurts to know that my parents had to face that possibility.

And then there were the countless times that I buried my face in my hands and begged my mom to keep the nurses from poking me with needles, begged her to protect me from the doctors who wanted to cut me open. She put on a brave face    a much braver face than me    but I know that she must have felt so powerless. As a child, I didn't always understand...she was my mother, she was supposed to protect me from pain, she was supposed to fix everything! As she looked into my pleading eyes and squeezed my hand, I know now that she probably felt more pain than I did.

And when the other parents talk about their children being on sports teams, sometimes I feel guilty because I know that this must hurt for my mom and dad. It must be difficult for my mom to drive me to physical therapy appointments while my friends are pulling on cleats and rushing to their sports practices. And sometimes, I hear the echo of my dad's proud announcement to the video camera nineteen years ago that "someday she'll be the captain of the field hockey team."

I think back to all of the times I came to my mom in tears, saying, "It's not fair!" Often, she'd remind me that life isn't fair. I know now that this response was meant as much for herself as it was for me.

Sometimes the pain that hurts the most is the pain felt by those around us. Something that my mom always used to say to me during medical procedures comes to mind: I wish I could switch places with you and take the pain for you. As I'm writing this post, I find myself wishing that I could switch places with my mom, too...but not because I want her to take my pain away; rather, I wish that I could ease some of the pain that she must feel.

But by focusing on all of the pain, I suppose I am forgetting the joy. I am forgetting about the time my mom said that sometimes I am more like a sister than a daughter to her because of the connection we have, because of the way we share advice, laugh together, and talk about life. By focusing on her tears of despair, I am forgetting about the tears of joy in her eyes when I rode a bike for the first time, a moment with so much more significance because of my disability. I am forgetting about the pride in my dad's eyes as I showed him my report card.

I am forgetting that in life, pain is unavoidable, but so is joy. Through the gift of life, we have the incredible opportunity to to leave the world more beautiful than it was when we arrived.

My goal for life is simple. I hope that by the time I leave this world, I can say that I have brought more joy than pain to the people around me. 

16 comments:

  1. Funny how pain can be such a cyclical thing, misery begetting misery.

    But I should imagine (extrapolating from what I've heard said by parents of children with a disability) that they found the lows lower, but equally the highs higher.

    And I bet they wouldn't swap you, for as you say - look at all the wonder, joy and awesomeness they'd've missed out on.

    In the same way that the things you've been through have shaped and formed you into the person you are today, so have theirs.

    We take our pain, face it down, and use it for Good (somehow) - far greater Good than could be wrought without the pain. It sounds as though the relationship you have with your parents is testament to this.

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  2. As a fellow young adult with CP, I can totally relate! Love your blog!

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  3. Oh Kerry, you are truly amazing. Thankyou for writing so honestly x As a Mum it is so hard to know how much to discuss with your child and when Cooper asks me to tell him his birth story I just end up sobbing mostly because he is still alive xx big hugs to you and your Mum xxxx

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  4. Kerry, I just discovered your blog and am reading it voraciously. You're giving a great new insight into a world that I have come to know. You have given a voice to many of the people I work with on a daily basis who don't speak many of these thoughts that I am sure many of them share.
    I am a paediatric physiotherapist in Toronto... Thank you for your honesty, your insights, your perceptiveness, and your compassion. I am learning, and I am looking forward to all your future posts!

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  5. Just found your blog and I love reading your thoughts! Thanks.

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  6. Kerry,

    As a parent to a child with CP, I am going through what your Mother went through with you as a child. I honestly believe that it is harder on me than it is him. I DO want to take the pain away and the needles. It breaks my heart. I would never trade my son for anything in the world but as a parent it is the worst feeling in the world to see your child struggle. I just wish things could be a little easier for him. I really enjoy reading your blog. It helps me understand what you go through with your CP so I can better understand it for my son. Thank you!

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  7. Kerry, this post hit me to the core. Thank you for your candor. I read it this weekend and tried to respond, but for some reason Bloglovin' reader on the iphone app is against responses. So, I sent myself an email with my, in the moment - and very visceral - reaction. After reading that email to myself, I decided to make my response a post on my blog. Here's the link http://aintnorollercoaster.com/to-my-child-with-special-needs/. Thank you for starting a very important conversation.

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  8. I hope Boo understands that my tears, my asking why is this so hard, my wondering why she has to suffer is not that she is bringing pain to me. But that I, her mom, the one who is supposed to "fix" everything, heal every boo boo, kiss away the tears is unable to stop her pain.

    I don't know your mom, obviously. But speaking as one I can say that every time I have broken it has come from a feeling that I am the one causing my daughter pain. I am the person who is not understanding why she needs to bang her head. I am the one failing this miracle of a girl.

    Moms (and dads too) are supposed to be the strong ones. When we see our children struggling (even Allie) we take it upon ourselves to think we are doing something wrong. Not that the child is, in any way shape or form. But that we have failed some how.

    We failed to give them what they needed. Or in cases like you and Boo we have to hold them down for tests, to make them better or to find out what is causing them pain. And every time we do hold them down we know that WE are the ones causing them pain. And yet as they cry they hold onto us. Forgiving us.

    This is a wicked long winded reply. But I want you to know, that from a mom, YOU never caused your mom pain. And not even the CP did. It was her own feelings that say I'm the mom. I'm supposed to do better than this.

    And sometimes it gets too much. Sometimes we feel so inadequate that we break a little.

    But we never blame our children, or wish they were not here.

    We only wish we could take away their pain.

    xoxoxoxoxoxo

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  9. I adore you. Hugs, friend. And hugs to your mom. This is such a beautiful post and I will say again what other moms (Tatum and Kerri) have said. Know that your mom's pain is because she wants the very best for you. I would do anything in the world to make life easier for Tucker - if I could take away the struggles that he has to communicate, that he will have throughout his life - that he will be different and possibly be made fun of, I would in a minute. FOR HIM. For ME, he is perfectly perfect exactly the way he is and I am so proud.

    I'm proud of you, too. You're such a great writer. And I guarantee that you've already accomplished your wish - you bring great joy. Gigantic amounts of joy.
    XOXO

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  10. As the parent of a daughter disable by brain cancer I am certain that you've brought infinite more joy to your mother than pain. You are a wise and beautiful soul! I know without a doubt that the world is a better place because you are in it!

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  11. Thank you -- all of you -- for your beautiful comments.

    Considerer: Your words are always so profound! And I love that last part of your comment. I am a big believer that pain does indeed make us stronger individuals.

    Laura: Thank you! I can't wait to check out your blog as well!

    Bron: Thank YOU, and hugs to you as well! I feel like I say this constantly, but I love reading your blog...Cooper is amazing, as is the rest of your family. xo

    Kathleen: Thank you so much for reaching out! Your comment made my day. It's always wonderful to know that I've made a difference in my readers' lives, even if it's just a small one. And thank you for trying to gain insight into your patients' lives. It sounds like you really go above and beyond your job description.

    GreenGirl: Thank you so much for taking the time to comment! I took a peek at your blog as well, and I can't wait to read more! Claudia is awesome. :)

    Keri: Your comment means so much to me. Thank you for being such an amazing mom, and I love reading your blog as well!

    Tatum: Thank you so much for your response! I read your post multiple times and it moved me to tears.

    Kerri: Thank you so much for your long and thought-out response...wow. I loved, loved, loved reading your take on it and it really made me feel better. I am so thankful to have the privilege to connect with you.

    Kristi: Thank you. I really appreciate your words (each and every one!), and I just want to say that YOU bring gigantic amounts of joy to ME! xoxo

    Sylvia: Thank you. That means so much to me! Hugs! And thank you for sharing Bethany's story. Your family is amazing.

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  12. This is great. I am having a photo call for those with CP. I hope u subimit some photos.

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  13. I just discovered your blog and I love this post. I'm a mother of a 7-year old with special needs and I can relate. This was a beautiful post; thank you for sharing!

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  14. I have read other posts of yours but never this one. I am so thankful that you wrote about this subject. As a mother, it gives me peace knowing about your relationship with your mother.

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  15. I'm still on the thought-train of disabled parents raising disabled kids: I wonder how different our childhoods might have been if our parents KNEW what it was like to be where we were? (I know it is likely not possible, as even as late as 1990, parents of medically fragile/potentially disabled babies were advised to institutionalize them) but still. What messages might we have gotten? It makes me think of the few disabled parents I do know of: Jeni Stepanek, who fully informed her child about his medical status and let him make the call regarding his life and medical interventions that he thought were necessary. I think about Jen Arnold, who asked her kids, "What can we use this step stool for at school?" not, "It's such a shame you have to use a step stool." Not, "poor you, you are medically fragile." Night and day differences. Such differing messages. Wow, your posts make me contemplative.

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