Monday, March 19, 2012

It's Not That Bad

I think I have written and rewritten this post a half dozen times in the last few months. Things keep popping up in the media that make me feel like I have to speak up but the words aren't coming out right. There is far too much emotion attached to this one.

Life is random. The mantra we are fed as children gets repeated endlessly: life is not fair. Indeed it is not, nor is motherhood. There is no fairness in some women's ability to conceive children while others cannot. The sweet, angelic babies are not doled out to the single women with no support system, nor are the high needs colicky babies reserved for the most patient new moms with eager grandparents near by and a supportive partner. There is often no rhyme or reason to children who do not get to live long. Babies with disabilities or diseases are not given only to parents who are strong and who can handle it. We did not ask for it. We did not choose it.  No one hands us a list when we are deciding to have children so that we can run down the options and check off what we want. Blond hair - check! Blue eyes - check! Athletic build - check! Social personality - check!



I am not a supermom.

I didn't choose for Kingsley to have spina bifida. If given the choice, I would have politely declined that option, would not have checked that box. I wouldn't have checked the autism box either. Or the one with the third chromosome. Or any of the boxes that would lead me to being a 'special needs mom'.

I did choose to have a baby though. I chose him. I chose him and whatever he was coming with, I chose to take it. I don't mean that I made this choice when we 'found out', I made this choice the day I decided we were ready for number three.

It's not fair that I did everything right and this still happened. It's not fair that some women do everything wrong and it doesn't happen. It's not fair when us mothers are told things about our children that we did not expect, did not want to hear, and yes, even feared hearing above all else. It's not fair. But as a mother, we know that life is not fair. Things happen, but we now must accept that it's not just about us anymore. Deal with it.  No matter what we had hoped for, when that little baby is handed to us the other rule of childhood applies: you get what you get and you don't get upset. The checklist is gone. Your baby is here. You have one job - love them.


Because what is most unfair is the lie we tell ourselves about how accepting we are of differences. The lie we have deep down where we don't want to admit. The lie that comes out the day you are looked in the eye and told that life really is not fair. To see how unaccepting we are of people with disabilities we only need to look at the termination rates after a prenatal diagnosis or the reaction an adult has to learning that they now will be switching teams from able-bodied to disabled. Life is over. A life with a disability is not worth living, apparently. That decision is not fair.

We have such a double standard going. We pat our kids on the head and tell them that they should be nice to the little kid in the wheelchair. Don't stare at the little girl bouncing on her toes trying to fly. Don't point at the little boy who looks a little different. Be nice. Be friendly. Just don't you dare be my child.


I'm told often by the amazing community that I find myself in that living with a disability is not that bad. I have many friends who tell me that having a sibling with a disability is not that bad. Having a partner with a disability, a coworker with a disability, a neighbour with a disability, a friend with a disability... All not that bad. Most would say not bad at all. I can tell you in all honesty, having a child with a disability is not that bad. Not at all what I thought it would be. We have had a few rough patches, yes, and a few awkward moments, but that goes with having kids, no?


Six years ago today, my incredible daughter Rachel was born and I was forever changed in ways that there are just no words for. What I wanted for her in that moment was the same thing I still want for all of my children: to know in every second of their lives how deeply and madly they are loved, just as they are. It does not take an extraordinary woman to feel that love or an extraordinary child to receive it. And though I do happen to think that my three are quite extraordinary, Kingsley is not more or less worthy of such adjectives than the other two. He's just a kid. I'm just a mom. His disability isn't his whole life anymore than its mine. It may not be fair, but it certainly is not the end of the world.

If you ever find yourself in that position of discovering that your child is not going to be who you thought: relax. It's not going to be that bad. You are strong enough, you are amazing enough, you will do just fine. There's no need to panic. Remember that people with disabilities are people. They love, they laugh, they play, they communicate, they live. If you can get over yourself, you will do just fine.



34 comments:

  1. This might be the very best blog post I have read, ever, on this subject. Ever.

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    1. I was just going to say almost that exact thing. This post was amazing!

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    2. I 100% agree. Well written my friend!

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  2. Jill, what a remarkable post! I have tears streaming from my eyes. I'm not a Mom, but sometime in my life hope to be one. Thank you for sharing your story.

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  3. This post should be copied to every single person out there who finds out they are going to have a baby with a disability. Beautifully put and exactly how I feel. It's not that bad! Brilliantly put Jill. Oh and Happy Birthday to your Rachel :)

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  4. Fantastic post about what it means to be a mother and you are right on. I did sign up to have a baby and ultimately whatever comes with that baby. Your boys eyes are remarkable in the first photo. So gorgeous and full of life.

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  5. wow im so glad i read this...great post.

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  6. Perfect. How do you take all the jumbled thoughts floating in my head and write them all out and make it sound good??!?

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  7. Thank you for writingthis. So perfectly said.

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  8. What a great post Jill!!!!! So well said! You make such a great point here that many moms could benefit from in reading.

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  9. Do you know why King is such a rockstar??

    Because his mama is! :)

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  10. I think this is one of the most perfect things I have ever read. Perfect.

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  11. This is a wonderful post. Thank you.

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  13. This is the most touching post ever! I love it! So beautifully put! Thanks for being able to write out what I've been feeling as well!

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  14. You have put into words what I have always thought and felt. As a person with a disability, I'm so happy to hear this from a mom. Thank you! So perfectly said.

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  15. Very Touching, I got diagnosed with a form of spina Bifida 8 yrs ago, as well as arthritis in the spine and knees, and if that aint enough, Bladder problems too. I see them all as hurdles we get over in life. You have a beautiful child hun, Blessed be xxx

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  16. Jill that is most amazing post. I'd love to steal it from you!
    This is definately something to share and share and share again!

    I think of what you say every single day.

    And Nick kept pointing to all the pictures of Kingsley!
    Happy birthday Rachel!

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  17. Love this. Love the words. Love the heart. Love the wisdom. Love the honesty. Love the LITTLE BOY! Love you. <3 Just awesome sweet momma.

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  18. And no sure why I'm listed as "penny" now - but this is Joanna. :) Aka - Jet's momma. lol.

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  19. Sing it sister. :)

    Happy Birthday Rachel!!!

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  20. Thank you so much for putting into beautiful words what so many of us feel.

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  21. Thank you for this post. My husband and I are expecting a son in May and he has been diagnosed with spina bifida. Reading this gave me comfort.

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  22. Beautifully said, thank you for sharing!

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  23. Lovely and perfect. Needs to be shared!

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