Sunday, February 13, 2011

Expectations

I just read this AOL article about a boy who has no cerebellum.

Maybe you're thinking that this is an article about a tragedy, but it isn't.

Baffling doctors and defying neuroscience, Chase Britton is an active boy who met milestones he should not have been able to meet without a cerebellum. This article reminds me of my own neurological issues.

I was born with Dandy Walker syndrome, a cerebellum malformation and hydrocephalus, an accumulation of cerebrospinal fluid in the brain. It reminds me of how lucky I am to be healthy, to have always been able bodied, to never have been discouraged from doing something or told I couldn't do it.

It is painful, though, to think of the provisions I had as a child. They were isolating. I didn't understand them. I didn't feel like I had trouble with things, but looking back, I know that I did. All I have to do is watch a home video of me walking somewhere or dancing in my ballet class. I remember tiring easily.

There were also provisions I didn't feel I needed, but took anyway, either because I was not given another choice or because I was told I needed it: recess indoors if it was icy outside, the use of the alternate, less steep and lower trafficed stairwell.

There were also optional provisions like the use of the elevator in high school. I never used it. I still have the elevator key on my keyring. It reminds me of how much I could have limited myself if I had taken certain provisions. Stairs are often a bit of a job for me. Always have been. But I can walk up them pretty well, run up them sometimes, and so I do.

It was good that the adults knew I had issues, though, and addressed them. I was young. I didn't know I had issues. When I got older, I started noticing that I was different and opted out of some activities and provisions that made my issues more apparent, like Track and Field. And I avoided telling people about my issues too. I distinctly remember being at the brink of tears when I had to tell my grade 9 gym partner that I wasn't supposed to catch a football to my abdomen. I just couldn't tell her why: I have a tube inside my brain that goes down to my upper abdomen to drain the excess fluid from my brain. I couldn't risk injuring or dislodging it.

It had become hard for me to talk about for reasons I still don't understand. I think it had a lot to do with my dislike for being treated like I was delicate or less capable, something I already had to deal with. I was terrible in gym class, largely because of my asthma.

I was fine with telling others I had asthma or that I had to take a break or sit something out. I used my puffer before and after class in front of everyone. I was such a slow/easily exhausted runner that one of my classmates asked me if there was something wrong with my heart. A few years later I did find out that there was, just a mild heart rhythm disorder, but something I needed and still need medication for. Who knows the degree to which each condition affected my abilities.

I could have tried to get out of gym class or opted out of a lot of activities, but I didn't and it was good for me. I'm so glad no one told me I couldn't do it or told me not to do it.

I'm glad that Chase also has this support, but I worry that people will enforce limitations on him or discourage him from aiming for certain heights. This seems more likely for him as his various conditions are much more serious than mine were/are. I hope that his provisions are well suited to him and that he understands them. I hope others understand them too. And him.

11 comments:

  1. I think, especially as a child, it is hard to feel 'different' from the others. We want to be one of the gang, so to speak, but feel maybe self-conscious about certain things. As a child, I had many warts all over one hand ( a relatively minor problem, and yet...) I was so self-conscious. Childhood photos of me from that period show how I always had that one hand hidden down in my front pocket!

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  2. Your story is so inspiring and powerful. I take from it many important messages but as a parent I am struck by imposing provisions and possibilities. As parents, we are only guessing about our children's abilities...and have to be careful not to limit capabilites. Thanks for the reminder and sharing your amazing story.

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  3. Thanks for popping by my blog. It is Sunday morning here and I am getting ready for church. However, I always check my blog, first thing, every morning and I was delighted to find you. Then I just had to peek and find out who you are...now here I am.

    I am a retired special education teacher and I couldn't agree more with your philosophy. Setting limitations on individuals with any kind of health or learning problems always gives them something to live "down to" instead of "up to". However, it is difficult to find that balance that allows growth but does not cause further problems.

    kt

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  4. What a wonderful post what reminds us of how we just take for granted our health and how we can limit ourselves or we can push those limits.

    Maybe you can write Chase a letter someday--or send him this post!

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  5. You sound like an incredible and very strong person.

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  6. A very moving post. We tend to have a strange, romanticized impression of life - until reality gets in. Your post reminds me of, yes, the fragility and vulnerability of human life, but also the resilience and strength of we mortals. Great stuff; please keep writing!

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  7. I have hydrocephalus, too, and there were several things that I was cautioned against -- mainly contact sports, and all that, but there wasn't really anything that my parents told me I _couldn't_ do, aside from that. (the "don't catch a football against your abdomen" instance caught me unaware; I never even thought of that).

    I hope that this boy is able to lead as full of a life as he is able. I hope that his situation isn't too stigmatizing, and that in a year no one makes judgments of his situation. Here's hoping little Chase is able to do lots of things that they think he _shouldn't_ be able to, for a long time to come.

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  8. You are very brave.
    I am glad that you have overcome so many disabilities with such spirit and courage.

    Here's to all survivors.

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  9. You really are an inspirational lady and with a great attitude to life. A great ambassador for children like Chase and an inspiration to all of us!

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  10. Mythopolis - Yes, this insecurity is usually most prominent in childhood, I think. Sorry about what you went through...

    Laura - Welcome to my blog! Yes, it's a delicate balance and it really is a "guessing" game, I'm sure, as kids probably don't understand or can't fully articulate what they are going through, what they want and what they think is best. Thanks for your comment!

    Out - Welcome to my blog! Finding that balance is so hard, but being educated on the issue and the child makes it easier, as I'm sure you know. Thanks for your lovely comment.

    Bossy - I didn't actually intend this post to help people feel more grateful for what they have, but I'm glad that it had that effect on you. Thanks for letting me know!

    Dom - Welcome my blog and thanks so much for your comment!

    Roger - Welcome to my blog! Interesting that you took fragility and strength, opposite qualities, from this. I think you're right and this complication is partly what makes it so hard to deal with. Thanks!

    John G - Your comment hit me because I admire your writing so much. Thanks!

    John - Welcome to my blog! I think some of the precautions are subjective and I need less now with the scar tissue around my shunt that protects it. I guess every case is different. I hope for all of that for Chase, too. Thanks!

    Friko - I really appreciate your comment. I don't see myself as brave. I think anyone in my situation would also strive to live fully. I have worked hard, though, and maintained my optimism, which I suppose is a feat. Thanks so much!

    Mary - Aw, thanks! I'm glad I inspired you and this attitude is the only way to live life.

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