Thursday, January 21, 2010

Oh, right, I have a child with cerebral palsy



I don't spend much time thinking about the fact that Max has cerebral palsy. It tends to sock me in the gut at random moments. Like today, when the world's biggest bottle of purple sugar arrived in the mail. Max likes the stuff sprinkled on practically everything he eats, and we were almost out of the container of purple sugar I'd gotten at Target around Halloween. I was so excited to find some online, so excited to see the look on Max's when I opened the package.

He squealed. Then he tried to pick up the plastic bottle with both hands, only he couldn't quite grasp it and it tumbled to the floor. He tried again, and again, but the bottle kept falling.

I felt so frustrated for him.

Mostly, I accept that because of the cp Max has trouble using his hands. I accept that because of the cp he has issues with talking and chewing and drooling. They are part of who Max is, and we help him and guide him the best that we can.

Every so often, though, it hits me that Max has cerebral palsy.

Like last week, when Max cried out in the middle of the night and I ran to his bed and saw that he had one arm pinned beneath his stomach because he was unable to lift himself off it.

Like a few months ago, when Max was walking down the stairs and trying hard to grasp the railing with one hand and mine with the other, only he lost his balance and almost tumbled all the way down.

Like when Sabrina was clambering over the couch recently and Max went to do it too only he couldn't get his legs to lift high enough and he couldn't pull himself up but he so wanted to.

The emotions that wash over me at times like these are a complex mix of sadness, distress, despair, anger. They're fleeting, though, because the very next moment I am focused on repositioning Max in bed or pulling him back so he doesn't fall down the stairs or helping him clamber over the couch and giggling with him.

But, mostly, I don't think about the cerebral palsy.

Only at certain moments like these.

32 comments:

  1. Liam has been crying/wimpering/and arching for the last 3 hours on and off...I have wrapped him up in an electric blanket to warm up the extremeties, given a second sedative, and three ounces of water....I remember on nights like these that I have a child with CP....but this past weekend when DH and I were alone without any of the kids...I forgot altogether.

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  2. I can tell you from personal experience that I appreciate (as I'm sure Max does) the fact that you want the best for us and that you would like to see people with extra challenges be able to do the things that those without them might be able to do, but let me comfort you by saying that Max doesn't know any different, so even though he does look different than Sabrina while doing certain things, I can assure you that with age will come acceptance and the realization that his cerebral palsy has allowed him to see, discover, and learn things from an entirely different angle than that of his peers. As a nineteen year old with CP, I couldn't be more proud of the woman it has made me and the lessons that it has taught me!

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  3. Yesterday Ben said that he wanted to go to the hospital "so they can fix my brain". No sadness, no drama, just point blank. That is where you go to fix things, so why not his brain. There is no quick referance book for this.

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  4. Oh - like this post a lot, an appreciate very much Erin's comment too.

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  5. It is so natural to feel frustrated, sad, concerned, worried, and anxious for your kids, especially when their path is less smooth than their peers and something happens to jolt you into concentrating on that fact.

    All you can do is keep on trucking, and keep on doing the best you can, and try to push those heartachey feelings to the side while cheerleading the successes. Not easy, certainly.

    Purple sugar! Clever way to add calories to your slim little sweetheart's intake! "They" (meaning those internet experts) say you can make purple food coloring out of fresh or frozen blackberries! Sounds like it might work, worth a try if you have the time/inclination:

    http://www.ehow.com/how_2322688_make-purple-food-coloring-from.html

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  6. I guess that would be a sign of acceptance with a dose of painful reality mixed in. I have some of those same feelings, Ellen. But it seems like as she gets older it is a little less painful, I am sure you feel the same with Max.

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  7. Among all the non-usual treatments you have tried for Max, has anyone ever offered you constraint induced therapy? Non-invasive and has solid research support as to effectiveness.

    Barbara

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  8. Beautiful post and natural feelings.

    I can't believe you found purple sugar! :)

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  9. I hear you, sister. Love that purple sugar! :)

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  10. I forget my daughters limitations sometimes, because I am so amazed by her ability to persevere and overcome. When I assume she will be frustrated or unable to do something. Then she does it and I am amazed all over again.

    Sarah

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  11. You said it sister. I love your post and what makes it even better are the comments, so reassuring. Thank you everyone.

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  12. The great thing I've noticed about kids is that they are so very resilient. Even kids without disabilities advance at different rates. My daughter is 13 months younger than my son and she's taller, and much more coordinated. It worries me sometimes, but I just remind myself that they will each progress in their own way and in their own time. I can only help so much, the rest is up to them and God.

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  13. I'm like that--the other day at the playground this chubby-legged one-year-old was taking the place by storm and I got wistful--I want that for Charlie. Whatever will be, will be.

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  14. I really relate to this post, articulated beautifully. Although my child has autism, the feelings are the same. I usually see the great progress and how happy he is, but just sometimes I get a glimpse of him through another persons eyes and, depending on the person, it can hurt, a lot!! I am in awe of your purple sugar hunting ability:) Jen.

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  15. I hear what you're saying, about watching Max try to pick up his purple sugar. And it makes me think of those "hidden" pictures, where there are actually 2 pictures that can be seen in one. Like the one of two goblets together, or 2 old men's profiles. Or is it a young woman's profile, or an old lady's face?

    We see what you see, as Max's mother, the frustration at not being able to pick up his sugar. There is also the "other picture". The blessed moment you're in, right now, where glee can be had, with just a shake of the purple sugar container.

    A therapist I had long ago, early on in my fresh, new-to-this mothering of special needs gig began, helped me so much. As I sat on her sofa, totally flattened with the sight of my child and all his meds that he needed to just do the basics that other kids do, she asked me, "so, instead of seeing how all his equipment enables him to participate, you think he's weighed down instead?"

    Aha. Aha.

    Thank you for the glorious picture of Max and his pure joy seeing his purple sprinkles. You just sprinkled glee on my day.

    Thank you.

    Alexandra

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  16. Amazing post, Ellen. And I love Alexandra's comments at the end -- the "other picture." Max looks absolutely adorably joyful in that photo. :)
    —Amy

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  17. Oh, Ellen. I cannot totally understand, but the love that emanates from your home to the world is marvelous.

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  18. Ellen,i am soooo proud of you and your hard work and determination. Your inner strength and tenacity never cease to amaze me. what a fine job you and Dave are doing raising such a beautiful boy and a lovely young lady. I am so touched by your blogs and so proud to call you my friend.........

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  19. It hits me hardest when my baby niece is doing things leaps and bounds more effectively than Max. But like you said...it's fleeting.

    And love that purple sugar!!! I guess you could make just about anything purple with food coloring...mashed potatoes...rice...bananas...pancakes...whipped cream!

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  20. Oh, darlin. You love him just as he is. Doesn't mean you have to love the CP. I HATE the CP, but Max? He's a doll. A purple loving lady's man.

    xo

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  21. Great post!

    I have a 4 year old with Down syndrome. I'm sure those who aren't in my little club think that my world would revolve around that fact. But it doesn't. It revolves around laundry and lunch and the fact that no matter how hard I try, I will never master such seemingly simple tasks as drawer organization.

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  22. I'm so right there with you. My (almost) 3yr old is developmentally delayed. I say that because we still have yet to get a real diagnosis. He does have a genetic abnormality but they say that it doesn't explain his delays. I forget sometimes how far behind he is. How much he'll struggle thru the rest of his life. And then there are times when there is no avoiding thinking about it. But when it comes down to it he's my boy and life goes on. I'm glad to know I'm not the only one who has those roller coasters of emotions sometimes though. Being in this "special needs" boat can seem pretty lonely at times.

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  23. A beautifully written piece. It brought a few tears.

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  24. Very well said. I feel like I am still new to the CP roller coaster. So I think I have more days when CP is obvious. It gives me hope to know that down the road that won't be the case. Thank you for sharing your heart about stuff like this. It really helps to know that we are not alone and that others have gone before us and lived to tell about it.

    I really appreciated Erin and Alexandra's comments. Gotta love this blog stuff - where people from all walks of life come together to share. It is wonderful!

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  25. Barbara from BostonJanuary 21, 2010 at 5:22 PM

    Big hug for Ellen and Max. He's learning to control his world the best he can, with you and Dave right by his side to keep him safe, to laugh with, to cry with if it becomes necessary. You are all so lucky to have each other.
    At least you have the diagnosis of cerebral palsy and you understand his limitations for now and can help him understand. I think of another little girl 50 years ago, who had trouble with left and right, jumping rope, riding a bike, tying shoes... and there appeared to be no reason for it all. It was not til I was 40 that they diagnosed head injury and brain damage causing a learning disability. It was just before Christmas and no one could understand why I was so elated with the news. I was not stupid after all. Max will have knowledge on his side.

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  26. These comments are awesome. Welcome, Wani, Super Frugalette and Emma, and others. Erin, I know that Max does not know any differently, and that he does not feel the pain that I, as his parent, do. But that's just it: I'm his parent. I can't help feeling the way I do at times. I love what you say about how his cerebral palsy will let him see things from angles that other kids don't get to experience. Therextras Barbara, we have not done constraint induced therapy, but it is something to consider. Max CAN use his right hand, to some extent, when he wills himself to. He just often forgets that hand ever exists. The most commonly heard phrase around our house is "TWO hands, Max! TWO hands!" (That is, aside from "Ur-ul!") Barbara, that is unbelievable that you were not diagnosed till you were 40. I know that, ultimately, having a diagnosis is better than having no diagnosis at all. And that the words "cerebral palsy" don't actually tell you much at all about a person's condition. It is such an umbrella term. Alexandra, you are SO very right—it's all in your perspective.

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  27. One of my most amazing students is a little man with CP. He is a real 'goer'! Nothing gets in the way of him trying to do everything the other kids do. One of my most memorable moments as a teacher, was the day he stood up in the local swimming pool for the first time ever ( without any kind of buoyancy device)straight as a pin and shouted out 'Look Miss Sue I'm standing up like the other kids, I've never done that before!'
    That's when I remembered he had CP and I had to battle to hold back tears. The rest of the time, just like you, we just get on with living :)

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  28. Barbara from BostonJanuary 21, 2010 at 8:45 PM

    OK, I am so curious I can't wait. Who are the winners of the Burt's Bees baskets. Its January 21 - who are the lucky readers?

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  29. That is exactly what happens to me too. I'm so used to Queen Teen's disabilities that I forget she is "Severely Disabled" until it comes up during an IEP or there's something she really wants to do and is having a hard time. Then it hits me. "Oh yeah, she's severally disabled." Sometimes I'm shocked, other times I want to cry.

    I'm glad to see you are seeing him as a kid, not just "disabled." That's great.

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  30. I look at little girls who can run and climb and swing and dance - and wish that for my child. Two years ago I could forget for a little while that she was disabled - at times she looked just like one of the preschool children sitting together on the mat. Now she lays in bed, or in her tilt wheelchair; she cannot sit, or belly crawl any longer, and when she asks can she dance with "Stephen" I would love to know that she could. So we dance with our arms, and our hands, and we "dance" together in the spa, because I know that one day soon she will not be here to dance any longer.
    I love to read about Max - I cared for a little boy with severe CP once - a beautiful boy, with a beautiful smile, and a heart of gold. God bless your family.

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  31. I just came upon your blog and find it very interesting. I don't have children (yet) but I know I can learn a lot from you for when I do. I look forward to following your story. Thanks for sharing it.

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  32. I can relate completely. It really doesn't hit me most of the time. Until they fall for no real reason and get hurt, until they choke on something all the other kids are eating with no problems, until they can't put their own shirt on and their peers are fully dressed, or our new fave: until they go potty alone and get stuck (butt in the water) because they can't support themselves on the full-sized seat. But mostly I don't ;)

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Thanks for sharing!