Tuesday, July 19, 2011

If a tragedy happens and nobody cries, is it still a tragedy?

Lately, I find myself annoyed at how damned gracious and accepting of Malachi's disability people are being.

My close friends and family have totally taken it in stride. They shrug off his inability to cope with frequent loud applause at a graduation, while I fret about how it might mean he can never attend sporting events, rock concerts or fireworks displays. They smile with a "well, of course, we knew he could do it" attitude when I tell them with tremulous relief of his latest achievements. They love and accept and make fun of him just as much as they do with Jaden, while I watch for the slightest sign that he's being treated differently.

They are treating him as if he were born with the differences we all have that make our lives a little harder, like being bad at math or having brown skin or being butt-ugly.

Damn them.

I just want to scream: "Don't you get it?? This is a BIG DEAL!!"

But then I think: "You're being stupid, Shasta. Would you prefer it if they looked at Malachi with pity? Do you want them to treat you like a leper? If anything, you ought be more like them. If you didn't treat it as hard work to have a special needs kid, maybe it wouldn't be."

It's a nice thought — mind over matter and all that — but it's simply not true. Other new parents don't have to spend hours researching treatments, filling out zillions of applications, dealing with social workers, reading books and blogs, doing physical therapy, positioning him appropriately, spending extra time at feedings, massaging his tight muscles, etc., etc., etc.

And the worrying. Good grief, the worrying. All parents worry, but when your only mental defense — that such things are remarkably uncommon and the vast majority of babies turn out just fine — has been completely shattered, then there's not much left between you and the howling winds of uncertainty.

But then, if I just thought of CP as like having green eyes — a unique but judgement-neutral trait — most of that would float away, wouldn't it? All of that work and worry is focused on getting him the most functionality possible, i.e. to not be so different. When the "different" part is stripped away, what is left?

Would this no longer be a problem I have to fix? Could I just throw in the towel, not care if he never learns how to eat solid food or walk, because who cares? We have wheelchairs and blenders, so what's the big deal?

How much of my pain and my perception of Malachi's future pain is based on actual problems and how much is based on comparisons to other people's lives? In a hypothetical world void of judgement, would Malachi even be bothered by his deficiencies? Sure, all of us have wanted X-ray vision, but I don't think it's the defining disappointment of anybody's life.

But we don't live in that hypothetical world free from prejudice, and even if we did, Malachi's disability isn't like having green eyes. It's hard work, for him and for us. It dominates my daily existence. It clouds my mind and makes it difficult at times to think of anything else. It threatens his life with too-close-for-comfort complications like a startle response that could land him in traffic and the inability to swallow food correctly that could lead to aspiration pneumonia.

So, thank you, friends and family, for being so accepting of Malachi's cerebral palsy. It really means the world to me that I don't have to deal with prejudice on top of everything else.

But it is still cerebral palsy. It is a disability. It is not like having green eyes.

16 comments:

  1. It's nice to have the support of our families, but it's hard when it feels like they don't get the struggles. My family is the same way, which I am so grateful for, but sometimes it feels like they don't "get" what it means for us. The therapies, the exercises, the way it consumes our days. I don't think that anyone who hasn't been there will ever really get it.

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  2. Definitely. It's almost impossible to walk in someone else's shoes, no matter where they are going.

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  3. Get noise cancelling headphones. We found some kids' ones online. Julia's always been scared at loud noises, so it's hard to go to outdoor events (though she's totally fine if one of us carries her, so I think it's part scam). We got some for our flight, because we thought she'd freak (of course she didn't). But, we brought them with us to the 4th of July festivities this year - when she started to freak, we put them on her, gave her a package of fruit snacks, and she was good to go for the rest of the time.

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  4. I so get what you are saying here. Totally. When having an honest conversation with friends or family about Ben or our life with Ben, I tell them that the preferred reaction is in between pity and thinking that our life is "just like theirs". Because, yeah, I hate pity...but I do want people to understand that life is hard over here. We can't do "typical" things and we spend alot of time doing "atypical" things like appointments.

    And yeah, sometimes most of the hard stuff happens when I compare our life to others or compare Ben to Daniel or compare my twins to other twins....so I try really hard not to do that...but you know what? I'm not perfect and I need to feel, really feel the sadness some days.

    Love, love, love your post!

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  5. Amy: Great suggestion. Thanks!

    Cary: We seem to be on the same wavelength a lot! I wish you lived closer! And yeah, somewhere between pity and "oh yeah, me too" sounds about right. But, man, I don't envy them. I *still* don't know how to talk to people about *their* special needs kid.

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  6. I think maybe part of what we feel each day is the struggle to accept life as it is, altering (not cancelling) our wishes and dreams for our special babes. It leaves us with the desire to smack anyone who dares look at our brave/strong boys & girls with pity as well as resent those who can't see the struggles we have.

    We don't want to be alone shouldering our loads, but we really don't want any company. It's no wonder so many marriages become troubled when special children arrive.

    It really makes my day feel better when I come across someone who is caring enough to offer to hold a door or pick up something I dropped or share a comment about a beautiful day, but accepting when I say Ben & I are fine & we'll work out what ever problem we're working on. Something I've marveled at over the years . . . Strangers are often more helpful than family . . . I wonder why that is?

    Faith

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  7. Annon6:05 AM

    I'm pretty sure having green eyes is a disability as well. Nah, Just kidding. Hang in there supermom, you're doing great.

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  8. I think of our emotional life as a special needs parent as being on a rollercoaster. How can we possibly want our child to be treated as normal and appreciated as special at the same time? Our family, parents, siblings, in-laws, etc. will never understand our lives or our minds and don't really want to get in our heads... it's too hard and too close. They have the luxury that they don't really have to get it. Unfortunately, I do get to live in your same reality... this is a very thoughtful and important post. Thank you for sharing.

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  9. There's nothing wrong with Malachi he is NOT lacking in some way everybody has something that cannot do and for us - people like me and Malachi - that thing just happens to be walking and I mean this in the nicest way possible you're his mother for heaven's sake stop pitying him because you send me a reply saying I don't pity my son I understand that you don't do it conciously but there is some part of that thinks different equals bad

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  10. Looks like I've touched a nerve, Nisha. Good! I want to understand better.
    Maybe you don't want pity, but I guess I'm saying I do sometimes. I want people to give me credit for having a life that is harder than average.

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  11. Anonymous5:38 PM

    I am a pediatric PT and got turned on to your blog by a CP parent. It has been incredibly helpful for me to hear your perspective. It is hard to know as the therapist what a family does or does not want me to tell them and how to express it. Especially as a non-parent myself. Some people seem to want pity. Some want me unemotional and honest. Some seem to want me to gloss over the hard stuff. You do make me remember that every time I explain what that extensor tone, or that clonus, or that abnormal synergy is, it is another little punch in the gut to a parent. I realize that you are not representative of all parents, but hearing your experiences helps none the less.
    Thanks!

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  12. Hello and welcome! I think you should know that everything you say is a punch in the gut...
    ... but you should also know there's really no good way around it. The best you can do is to try to punch us in the gut as lightly as possible, but the truth hurts and the truth is that our children are not going to be the way we thought they would be. Sheltering us from that will only make us feel worse later.

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  13. @Shasta

    Shasta, it may help to change the word in our minds from pity to mother's heartache.

    Pity seems to represent looking down on someone. Every mother has a heartache when something hurts her child, even if it's just a bee sting.

    But a heartache is our own pain (we have a right to it and need to express it) and doesn't "down" anyone else. Heartache can lead us to look for answers and find solutions.

    Heartache makes us drive our children to be the best they can be, even if it means causing pain by stretching stiff muscles, even if it means being a drill sergeant making our children try to do the impossible (move a limb they don't even know is there).

    When all you want to do is hold them close and never let life hurt them again, heartache makes you send them out to fight their own battles in a sometimes cruel world giving them stepping stones and moving as many stumbling blocks as possible out of their way.

    You're doing a great/tough job with your boys. Trying to balance the needs of the "typical" & "non-typical," rejoicing differently for each milestone for each boy . . . You, and other moms & dads doing this, are remarkable.
    Faith

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  14. I so get this, and so many of the other comments as well. To prevent me from crying more than I already am, I will leave it there. Well said!

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  15. Interesting post - I think I've been swirling around in different stages of grief all the time, and this is really part of it - trying to make peace and learn to live with things as they are and as they change and as our lives adjust. Totally normal to feel contradictory sometimes!

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  16. I think I'm like the accepting relatives. But like the other pediatric PT (although I am not anonymous) reading blogs has helped me understand parent perspectives enormously. Barbara

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