Day Thirteen

What She Wore: Blue jean capris; black and gold striped tee with a square neckline; those damn black strappy sandals.

If I were giving today a subtitle it would be: words people don’t like. You see, there are words that make people cringe–make them turn away or shut down. For many, cerebral palsy is one of those words.

You see, Charlie has cerebral palsy. They told us in the hospital when we deciding whether or not to keep him on life support, that he would have it. They said he could be in a wheelchair. They also told us that he might be retarded. Wow, those are two more words that most people wouldn’t want to hear.

In the hospital, when choosing between that and no baby at all, it was an easy decision–I wanted my baby. Now that I’m home, it’s hard to see him poked and prodded, labelled and diagnosed. Today we got our official diagnosis: spastic quadriparesis, and truthfully, it fills me with tears. It’s a diagnosis that comes with a lot of baggage–having all four limbs affected means a much greater chance of mental impairment. It’s kind of funny because in the hospital mental impairment was the least of my worries. I spent the last few years working with kids of all different IQ’s and I knew that with the right direction a kid with a low IQ could still work, have a family, and be a part of society. Now, I’m scared to death.

The degree to which his muscles have been affected still seems mild at this point: tight hamstrings. Right now, we’ll give him lots of stretches and splints on his knees for when he sleeps at night to keep him from curling up too much. Later on, the doctor predicts an oral muscle relaxer. Cognitively, he seems OK at this point, but babies aren’t expected to do much. I’m trying to take it one day at a time, but today that’s a little hard. I’ll try listing some positives:

He eats great! We’ve moved up on the weight chart.

We finally made the height chart (gosh darn short genes)

Doctor thinks his neck strength looks good.

He’s reaching for his toys although he doesn’t make contact most of the time.

His legs are strong and he stands pretty well if you hold his hands.

He makes his own noises, smiles, and laughs.

He’s putting things in his mouth.

He’s using his vision more and more.

That’s all I’ve got.

PS: If any of you are so inclined, googling cerebral palsy is a pretty mixed bag–there’s a lot of misinformation out there. Feel free to ask me a question if you have one–I’m pretty up-to-date on my research.

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Comments

  1. I would think the not knowing would be the worst. You’ve more strength than I’ve got; that’s for sure.

  2. Lurker here. Just wanted to say that the most recent picture of Charlie is so cute. He’s such a sweet little boy!

  3. Charlie is absolutely adorable!!
    I understand your fears and your concerns, but try not to take his ‘official’ diagnosis too literal…meaning..oh gosh, how do I say this without sounding insensitive…in other words..focus on the fact that you started his therapy early..focus on all his wonderful strides..focus on the fact that you’re a teacher with infinite knowledge and resources under your fingertips..focus that for the next 5 years at the least Charlie will have all of your strengths to himself. I for one, even though I don’t know you very well, would feel very confident having someone like you on my side. You’ll do so much with him!! yes, he’ll have setbacks, yes, he’ll have complications, but I truly believe you’ll get a lot more from Charlie then you may expect (or worry about) right now. Keep your heart open, like you have been doing and EVERYTHING will be possible.

  4. Charlie is just so darn cute! I love that new picture.

  5. yep…I love the new picture to…he’s a doll.

    I’m not very good with words…I liked what Irene wrote. Everytime I read your blog I’m amazed at your strength (yes I’m sure you have weak moments). You are an amazing women and Charlie is just as lucky to have you as your are to have him.

    Dawn

  6. He looks and sounds wonderful. I cn point you in the direction for a couple of support groups if you are interested. I agree 100% with what Irene has said up above.

    Focus on what a wonderful little boy you have. Focus on how gorgeous he is. Take joy in all the little things (I know you already do this).

    The label sucks because it is just that, a label. When D got hers…gosh, it was so upsetting. But, we moved forward. We used it to our advantage. We got the best help possible. All things that you are already doing! Charlie will be the best of his abilities because of you providing him the support and help that will guide him upwards.

    You are already on the right road. Give that baby huge hugs and kisses and a raspberry on the stomach. Don’t worry about the label too much.

  7. That is the most amazingly cute picture. I love that in spite of all of the misinformation, you are so diligent about educating yourself. I really respect people who make an effort to know, even if it is hard. Ignorance is not always bliss… :)

  8. Great post, Katy.

    Your child, with cerebral palsy (yes, it’s okay to say it. It’s what is), is an amazing kid, with an amazing mom! :-) He is so beautiful. Just look at that picture! He is going to do amazing things.

    Yes, labels/diagnoses may stink, and they certainly don’t encompass ALL of who your child is, but they will help get you the services Charlie needs.

    I agree with everyone else–*Singing*…accentuate the positive, eliminate the negative…

    Speaking from personal experience with my Jacob and his autism (another label!), it is KEY to stay positive. And keep making the lists if you need to see it in black and white, honey.

    HUGS!

    Now I’m all caught up…at least until tomorrow! LOL

  9. Nadine Hightower says:

    But think of all the hurdles that Charlie has overcome so far!
    He will have tough days. But you will manage to get through them.

    Hang in there!

  10. I send you hugs and cry tears with you.
    I also say to you that you have a lot of positives and by having a diagnosis allows you to act sooner rather than later. And one other positive that you have ok two. You have strong faith in God AND you have the experience and tools necessary to help your son fit into society.

    Your son is gorgeous and he is doing well. Give thanks

    ( so mush for me keeping it short LOL)
    Oh I just read Irene’s comment and yes yes to all that she says. Also to joell comment (joell both have son’s with labels of Autism)

    Hugs to you again. It is rough, but you know what it gets better.
    Hugs!

  11. Small Town Girl says:

    I agree with Jenn, I think not knowing how things are going to be must be the worst. You’re strong, Charlie’s strong, just look at how far you’ve already come!

    No one wants to think about living life in a wheelchair, but that is my no means a death sentence. My uncle was in a car accident over 30 years ago (I know it’s not the same situation) and has overcome almost all of the doctor’s predictions for him. He shouldn’t have lived through that accident, and he definitely shouldn’t have lived 30 years past it. He has his own home, lives by himself, does everything around his yard and farm himself. Yeah there are a lot of accomodations that he’s had to make to make his life easier, but by doing them he’s been able to have a pretty normal life.

    Positive thinking is key, even when it’s not easy!

  12. What a beautiful little boy! I have to agree with what Irene said. It is a diagnosis, but the range is so vast. For whatever reason, I know several people with children with CP and with early intervention and therapies, it is amazing how far those kiddos have come. I can’t imagine how you are feeling, but reading your blog makes me believe that you are one amazing woman, and so very well educated and that kiddo is so lucky to have you for a mommy!!!

  13. Oy–labels. In some ways they help us know what to expect–a little. The problems come when we use labels as a reason to limit what someone might truly be capable of. Charlie has made more progress than I’m sure anyone in the beginning thought he would, as you’ve pointed out. I love that you’ve educated yourself as much as possible–that takes away a little of the fear from not knowing. I hope you’ll always keep your mind open with Charlie–he probably has a lot of surprises up his sleeve–and you seem like just the woman to handle it.

  14. Labels, are just that, labels. You keep moving forward, and you know, when you are in the middle of life, labels really do not matter. Life and love, and that little boy do. You know that I know what you are going through. Keep your head up and keep the faith in that wonderful little boy and know that everything will turn out how it is meant to be. My thoughts and prayers are with you.

  15. He’s going to have the best possible life because he has such loving parents.

    LOVE, LOVE, LOVE, Charlie’s latest pictures. He brightens my day.

  16. Leucantha` says:

    Katy,
    Regardless of labels that is one cute kid. I have no idea why God chooses these paths for people, it is not one I have been down. However I can’t help but think how lucky Charlie is to have a mom like you with your education and experience.

  17. It’s hard to know what to say, I can only imagine what you and your family are going through. I read that link about cerebral palsy, to tell you the truth, I’m a little embarassed that I don’t really know much about it(aside from what I just read).

    If you don’t mind me asking, will the physical therapy you’re doing now possibly prevent Charlie from getting getting more stiff, or can it actually reduce some of the stiffness?(or can you just not be sure until he’s older?)
    HUGS,
    Antonella

    PS-I know it’s been said but, Charlie is adorable!! I LOVE his pea costume!

  18. Well what does one say. I cannot say I understand, my kids only had ADHD. I do have a nephew with cerebral palsy and he did have some mental impairment. However, at 32 he lives with his Dad but does hold a job and his life is way better than some I know that have no impairment. My kids have a friend with cerebral palsy and his only issues are physical. I am going to keep praying for Charlie and for his Mom and Dad.

  19. big dog mom pam says:

    Charlie is a beautiful boy. I don’t know what to say about the “official diagnosis”. My sister was diagnosed with Cerebral Palsy back in 1954. Back then they didn’t have the stuff to help like they do now. I’ve been a lurker for a long time, but I wanted to let you know that I think you’re doing a great job with all this stuff with Charlie.