Dec 1, 2011

CP Connection-The Dreaded Comment

Stumbo Family Story

We finally got Mark's official CP diagnosis two weeks ago, although unofficially we've known for a year and a half. Today I'm linking up with CP Connection to share a CP experience with you.
The Dreaded Comment-He seems fine to me.

Brett and I hear the dreaded comment now that Mark is walking quite a bit. Normally it's after I say something about Mark's progress and I hear "well he seems fine to me." I know that people mean well but the thing is, he's not fine. But if they witnessed the following, they would never say it again.
  • Mark's legs cramp up and get so tight that he can hardly move. We have to massage them while he screams and cries to loosen them up. It normally takes 45 mins to a hour. That is not fine to us.
  • Mark can walk, but you missed the year of therapy to get him there. That is a miracle to us.
  • Mark doesn't learn any motor skill on his own, he has to be taught.
  • Mark doesn't have enough muscle control in his mouth and he drools all the time and constantly chokes on his food.
Mark's progress is amazing and we are so blessed. But people including our own family never see his daily struggle. So when we hear "he looks fine to me," we feel like they are discrediting all the hard work Mark does. And that's why it's the dreaded comment. As his parents, we are so proud of his hard work and determination that it hurts us to hear it downplayed.
I am so amazed by my son and his strong character. He fights so hard to do the things his twin does without effort. But he almost always has a smile on his face and he is such a happy little boy. I love my little tough guy!


4 comments:

  1. Hi Allison! I so get what you are saying. I really think that most people just don't want to believe that bad things happen to good people...so they say something like that to make themselves feel better! Mark is adorable!

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  2. Thanks for joining the CP Connection. Make sure to add your link, I think I found you through a comment on a different blog.

    As for "the comment" I am sure it must be so difficult to hear, especially because you know and see the struggles. The diagnosis is so new, how are you doing? And I mean, really doing? dealing with our children's diagnosis can be so very difficult. Although I did not experienced it with Nina at the same degree (because we adopted her knowing she had CP) my expreince with my biological child born with Down syndrome was very difficult. Dealing with her diagnosis is one of my greatest "down" moments in life.
    I recently blogged about what it was like to receive her diagnosis. It took me 24 blog posts to be able to really share what it was like to hear "your baby has Down syndrome"
    Anyway, so glad you connected. So glad we have other moms that "get it."
    And if you need to talk, shoot me an e-mail!

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  3. I can only imagine how difficult that must be for you to hear. I know Mark works very hard and so do you. I am inspired by the great mother you are and I'm proud to call you my friend.

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  4. First off
    Happy b day Molly and Mark

    Seconed i love your blog design


    third Mark reminds me a lot of my self I have mild CP as well. i can walk run and stuff but speech continues to be a problem, which could be a factor of my bad spelling, I am in college and am 20 come visit my blog lifeofnldcp.blogspot.com
    mark will b ok he does not need to be cured he will have a good life

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