Monday, April 13, 2009

Monday Morning Confessional: I'm still in denial about the cerebral palsy

Dave and I went out Saturday night to see I Love You, Man. It's pretty amusing, and introduced me to the concept of "man dates." We had time to kill before the movie started, so we swung by a new bookstore in town. I'd heard it was owned by parents of a child with autism, and I've been meaning to visit.

I spent the entire time browsing the "Special Needs" section. I felt a little wistful about some of the issues the books addressed—ADD? Wow, life would be so different if Max had that instead of CP [denial]. Tourette's Syndrome? Yep, I'd trade [denial]. Bipolar disorder? Not fun but still, not CP [denial]. Then I found this book.

First, it dawned on me that I'd never even considered buying a book about cerebral palsy [denial]. I stared and stared at the cover, showed it to Dave and said, "Look, it's Max." And I felt a serious pang of sadness [denial].

Book Boy holds his left hand in the same downward position that Max holds his right one. His toes are pointed the way Max's do. He's got that same sweet smile Max has. He's playing with a train, by himself. He has a mop of hair.

It was a sobering moment; they strike sometimes when I least expect them. But they never last. I snapped back, and decided it would be a good book to read.

We bought the book. We went next door to have ice-cream. We saw the movie. And it felt really, really good to laugh.


  1. hay I knwo what u mean somedays I wish for different disablities too since I got ocd.

    I have that book well my mom dose so it might be a little outdated. That means I am old lol. come visit

  2. That was a very moving post, Ellen.

    The funny thing is that there was a time I would have traded for 'just' CP in a shot. I used to go to the bookstore, browse the special needs section, and wish there was a book out there, anywhere, that I could pick up and read about Connor's genetic condition. I'd get mad and jealous looking at the rows upon rows of books about Down's syndrome, autism, heart defects, and yes, CP, because those parents could look at a book and see the list of possible effects, therapies and medications that might help, support groups, et cetera, and here I was with nothing but a whole bunch of doctors who told us over and over again: "We don't know." I guess that's one of the reasons why I blog-- in the hopes that if someday some other child is diagnosed with Connor's condition, they'll be able to sit down at the computer and find some answers. If not that, at least they could find comfort in the fact that they aren't alone.

    I've stopped scanning the bookshelves in the special needs section, though I do occasionally browse through medical journals. We've accepted the idea that we aren't going to find answers sitting on a shelf somewhere, as much as we'd like to. It took a while for me to stop looking, though, and it was a bitter pill to swallow.


  3. Wow. That little boy on the cover looks just like my Buster baby, down to the left sided weakness. The posture is almost exact, so's the haircut and the hair color--like someone drew a little cartoon of him.

    I know JUST what you mean about denial. I have days when I get the "why mes" to be honest.

    I had a surge of anger when we got our diagnosis. This sounds awful to say, but because our oldest (who we adopted from a relative of my husband's who, suffice it to say, will be a guest at the federal pen hotel for a good long stretch, and that is with good behavior, and so will her boyfriend, and that's a good thing) is developmentally delayed, I felt--this is awful to say, but I did feel it--that I had "made my contribution."

    I don't know if that makes sense. I felt cheated when my new baby had "special needs" too. After all, wasn't I raising a "retarded" (they still use that term around these parts) child who would always need some sort of oversight or a group home when I'm too old? Hadn't I made enough of a "sacrifice?" I sound like a selfish and mean old pig but this is how I honestly felt. Once was one thing, and we knew full well what we were getting into with Bubba, so no complaints there, but twice? Who hates me, I had to wonder? And then, when my husband was killed, well, talk about three strikes and you're out! I felt like I aged fifteen years in five years' time.

    If it wasn't for my parents I swear I would have gone nuts and gotten really depressed. What saved me is that I had to work because we had trouble with the life insurance and it took awhile to get it. As it is now, we're OK. We're not "optimal," but we're really OK. We have our little house, it is not big nor fancy but it is in good repair and paid for, we have enough to eat, we have decent clothes and toys for the boys, we are not far from my parents, they love the boys, they have a few cousins not too far away, and my only complaint is I wish I had a little more money for foolishness day-to-day. But we know how to economize and make do, and we make sure that we save a litle bit every month for that rainy day.

    That book looks interesting. I had never heard of it, and I do like to "peruse the titles" too. I may see if the library has it. If not, they may be able to get it from a neighboring one.

    It's good to laugh, Ellen. We need to do more of it. We had Easter Dinner at my folks' house (I am still stuffed up on on that DAYQUIL for flu) and then we watched a DVD that daddy/grampa got from the store called UNDERDOG. It was the stupidest and funniest movie that was based on the UNDERDOG cartoon, except in this movie the dog was real (not a cartoon) and he got adopted by a security guard and his little boy. We all laughed ourselves sick. It had Jim Belushi in it, but the star was the dog, no question. Definitely a kids' film that adults can enjoy too! If you haven't seen it and your kids like dogs, it's a winner, I think!

  4. I play the trading game in my mind sometimes, too. Sometimes all kids with a normal size head, whatever their special condition, trigger this comparing process (mine has got microcephaly).

    Speaking of denial and getting over it, my son just got a haircut. He previously had this thick bush of long locks that sometimes hid the shape of his head. The short haircut really brought out the contours of his pear-shaped skull, which made me sad for a while. I had to give him extra cuddles just for that which made me even sadder because shouldn't I appreciate him for what he is. Every now and then there are moments when you bitterly realize your kid IS different and if that makes the other moments "denial" then that's fine.

  5. Maybe a bit different but yesterday I indulged in a game of "What if?". I don't play this often because it's not fun at all and basically just reduces me to anger and tears.

    I think I go through moments of denial - times when I think everything will be ok - that Bennett's CP isn't a big deal. And then I realize things will be ok - just not within the "normal" range of ok. But ok for us. I hope that makes some sense.

  6. That is a good book. I flipped though it at the library last year. It didn't have what I was looking for (obviously) but it's good for parents.

  7. I think I may look into that book myself. We're new at this game.

  8. Sounds like you needed to get out, and hopefully this will be a good read for you, I'm sure it will answer some of your most burning questions.

  9. Wow. How true. Denial can hide a lot of feelings. It has kept me from planning all that much for the future.
    It is nice to see that although it might not ever go away, it is easier to deal with.
    Great post.

  10. Thanks for this post. I was surprising to read that someone that's been dealing with this so much longer than I have (Ben was just diagnosed 6 months ago) is still dealing with denial. I guess it probably never ends...especially when it comes to our kids. I am definitely going to look for that book.

  11. Hhmmm, interesting. I haven't thought much about this before, but now I am thinking about it, I realise I never went down the denial path. I think in fact, weirdly, I was very grateful for the CP diagnosis.

    Before that we were in this land of infinite possibilities. I think I appreciate the concrete nature of the dx. It meant that I could start reading, googling and find out more about what we were dealing with and what we could do to help BC.

    I haven't read the book that you found. I will look out for out next time I am in a book shop.

  12. Denial...I'm not in denial (yeah right)...

    So glad to hear about Max and recognizing letter! YEAH MAX!

  13. The first time I saw the Babies with Down syndrome book in this series I cried my eyes out, and it doesn't even have a child on the cover. I think we all experience the denial factor.

    Denial seems to hit less frequently around here these days, my girl will be five in July. Thankfully my heart has made all the necessary adjustments.

  14. p.s. Max is adorable! and I happened this way via 5 Mins for Special Needs.

  15. I know, it's hard to believe that after six years I still have some denial, but it's there and it bubbles up from time to time.

    * Jess and Dianne, I can only imagine the whole other kind of hell of not knowing what's wrong with your child. We knew from the get-go what had happened to Max (even if we didn't know why), and I felt that we were lucky in that regard.
    * Felicia, wow. What you have been through. You are lucky to have had such wonderful parents, and I'm glad you guys had a fun Easter. Thanks for the movie recommendation. I still think you should do!
    * Rebecca, I love what you said about your heart "making the necessary adjustments." And Barbara, what you said about a new kind of OK. So true.
    * May, Max also has microcephaly, which I used to worry about so much when he was little, until the doctor encouraged me to pay attention to what he was doing, not his head size. It was good advice.

  16. Hey, this post is really interesting as an ADD Dyslexic who is raising a child with CP.

    I had a very hard time excepting that my daughter had something wrong. When my wife realized our daughter wasn't keeping up at 6 months I thought she was crazy and then I got very upset with the therapist when after another 6 months Haley hadn't made enough progress and the therapist sent us to a neurologist. But when the neuro said it was CP I made up my mind then and there that she would be able to be successful. I was lucky enough to grow up with one of my best friends having CP. He was actually in our wedding and is a Lawyer today. Haley was 1 when she was diagnosed. She has spastic diplegia which impacts her legs mainly. That was 5 long years and 1000's therapies, 100's of doctor's appointments, and a hell of a lot of paperwork ago. But now she is doing so well and excelling in school. I actually just posted a blog of our date yesterday where we went to the playground. Check out the video of her climbing here.

    She is an incredible kid and has taught me that it's okay to fall because you can always get back up.

  17. Max is a cutie and my heart goes out to you. I occasional catch up w/ Max on 5 MfSN. My little guy has Ds. I don't know much about CP, but I have heard an incredible young woman w/ CP speak powerfully about her life and her "gift of CP". Have you heard of Gianna Jessen? Her story brings tears to my eyes.

  18. I forgot to say... As a kid I used to always wish I could change my disability. I know my friend who has CP did as well. It's the thing I'm most terrified about for my daughter. I don't want her to have those feelings so my wife and I make a conscious effort to let her know how perfect she is as she is.

  19. I don't thinkI am in denial myabe I would be if we had an ACTUAL diagnosis. But I do get angry (momentarily) when I see a child walking effortlessly, I want to tell the parents how lucky they are and that they should never take a moment like walking to the store for granted. They would probably call the police about some crazy lady. I have never bought a book either, I hope I am not in denial.

  20. I hear you too! I can say that I'm ok with the CP, but then something happens and I get all bummed out. I use to make deals with God in my prayers. Kind of went something like, OK, I'll take the fact that he won't talk, but can you please just make sure he can walk? Ok, I will accept the epilepsy but you can't give him the brain malformation, I just won't have that. How much can one little boy handle?" "Dude, you're not being fair right now....give us a break!"

  21. In the beginning I sort-of longed for Down's Syndrome because it seemed so much more predictable than CAP. I was an idiot,though. Down's is no more predictable than any other thing.

    I have moments where I suspect I'm still in denial about my kid's special needs, but I had a friend in college who said denial makes the world go round.

  22. Ellen, I can't even begin to tell you how much I loathe "that" book. It was given to us shortly after Regan's diagnosis....and it sent me into complete freak out mode. I was searching for signs of all kinds of things that didn't even apply to her.

    I think the main problem is the spectrum of diagnosis that is CP. It is true that each child with it is completly unique and no two children have it to the same degree and effect. After I panicked about that book for the first year...John Mark threw it out, and said Regan will not be defined by that book....and she hasn't.

    Use it as reference, but don't let it define Max. He will carve his own way.

  23. Eek. I will read with caution! And burn, if necessary!

  24. Ellen, thanks. I needed that.

  25. That was one of the first books I bought.

  26. Ellen, I really needed this post. It told me that it's okay to live in denial sometimes. That in five years, I may still have my moments where I feel that pang of sadness that things *should* have been different. And that's okay. It really is.

    I go in and out of denial it seems, partially since Elijah is doing so well (just like Max!). He's walking, which I know is a miracle in and of itself. But, when I think of what he can do with his hands, I get so sad when I realize that a four or five month old can do more. And there it is...that denial. Sometimes I think denial might be the only thing that gets me through the day. I'd rather think of it as being positive.

  27. Our kids in cartoon, strange. You'll have to let us know if the book is worthwhile. Maybe a little acceptance at a time is the mind's way of NOT overloading.


Thanks for sharing!

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