Wednesday, December 14, 2011

8 things I want you to know (cross-post)

In the past 3-plus years since Ben has been diagnosed with CP, we have learned a lot. Not only about CP, but about the world we now live in. The world of disability. And since I have your attention, I thought I'd take this opportunity to share some of it.

1. First of all, I am not super-mom. Nowhere near it. I am just like other mom's out there...except I ended up with a child with a disability. I am doing EXACTLY what you would do if it happened to you.

2. Our life is the same as yours, but different. In some ways, I don't want you to think that we are any different than you. We have the same joys and struggles that you have. Most days, we are just like you. We get up in the morning (way too early in my mind), go to work,. take the kids to preschool, get groceries, do laundry and make dinner. We watch cartoons (probably too many) and play with lego and play-doh and Thomas. We go on vacation and then have to deal with paying the credit card off later. But then again, I do want you to know that our life is different than yours. Harder. More complicated. We have appointment upon appointment. We have to think about wheelchairs and walkers. We have to schedule therapies and surgeries. It sucks. We also have to think about accessibility whenever we go somewhere new. That's probably what I hate most. Every time we go somewhere new, it's such a struggle to figure out if (or how) it'll work for Ben. Sometimes we just don't go. Sometimes we do go and end up leaving because it just won't work (and usually tears ensue). And then sometimes we go and it works wonderfully.

3. Everyone has their THING. I have to believe this. Life sucks sometimes and sometimes it feels like it only sucks for us. Then I remember a friend who lost her mom WAY too early. Or another who lost a sibling. And another who has had a miscarriage or two or three. I have friends who have actually lost a child. I now know many, many people just like us, who have a child with a disability. So yeah, I believe that we all have struggles and problems and loss. We just happened to be the ones that has a child that can't walk.

4. Don't jump to conclusions. A six-year-old in a stroller may not be able to walk. A child having a meltdown at Wal-mart may have Sensory Processing Disorder.

5. You already know that your child is not the same as the next child. Your child is unique and special. Well, it's the same for children with a disability. One child in a wheelchair is not the same as the next. One may be able to speak, the other may not. One may be cognitively-delayed, the other not. Remember that just because a child (or anyone) cannot speak, that doesn't mean that they can't hear or understand you. Treat everyone with compassion.

6. It's not OK to stare. OK. You probably already know that. But maybe you don't know that it's OK to say "Hello". Especially to a child with a disability. It's even OK to ask questions. Really. Please teach your children that those with disabilities are the same as anyone else. And are just as worthy of your time.

7. Statistics are (almost) meaningless. Especially to people dealing with a medical condition of some kind. I remember when the boys were born at 30 weeks. The statistics seem so good for 30-weekers so those on the outside assume everything will be OK. For example, 90% of premature babies turn out OK. That seems like a great number. But that means that 1 in 10 are not. 1 in 10 develop a permanent disability such as cerebral palsy, chronic lung disease, blindness or deafness (and yep....we ended up being the 1 in 10). Imagine being told that your child had a 1 in 10 chance of having one of these disabilities. Would you think that everything is OK? This applies to anyone in your life. Many (or most or all) of you will at some point have someone in your life that is diagnosed with cancer. Perhaps this person will be told that the survival rate is 90%...sounds first. Remember that they have just been told that 1 in 10 people with their condition don't make it.

8. And finally, no one wants to be pitied. Please do not pity us. Have compassion for us, but please do not pity us. Our life is good. More than good. We are blessed. We have two wonderful boys, good jobs, lots of help and support, a beautiful home and really more than most. We are happy. In some ways, I feel like we have MORE than you. Does that seem strange to you? Probably. But it's true. We have learned what is really important in life. Every night when I go in to the boys' room and see them sleeping, I am full of gratitude. Because I have two healthy, thriving children. We could have lost Ben. But we didn't. Aren't we lucky?

(I struggled with whether or not to press "publish" on this post. I'm hoping it doesn't sound preachy. My intention is only to share what we've learned as parents to Ben.)


  1. I especially love number 5. There are many people that don't speak to Mason because he can't respond with words. But he understands every single thing that is said to him and I wish people would get that. Thanks for posting this.

  2. I love that you shared these things... As a mom of former preemies, one with mild Hypotnic Hemi-CP, SPD and PDD-NOS, and another that had a trach for over three years, as well as another who went to be home with God, I have many times thought of the same things you shared.

    I've looked at some of your posts, and you're doing such a great job with your boys!

    I hope the SDR treatment helps Ben!

  3. I live and die by number three. Whenever I feel like life has handed me too much I remind myself that we all get more than we think we can handle--we just deal with it whatever way we can.

    Ben and Charlie's disabilities sound so similar these days. Although Charlie is clearly a little more affected. We really struggle the most with the legs--they don't do much for us! I do wish Charlie could talk like Ben, but I've realized now that I have the twins that he makes very little noise. I really believe that the speech center of his brain has been effected and talking just might not be possible. Thank goodness for the iPad and augmentative communication!

  4. This us remarkably un-preachy, Carrie. Both practical and sensitive. Also glad you hit publish. Barbara

  5. I found your blog through a comment you left on Love That Max and I LOVE IT and I am SO glad you pressed publish on this post. I've added you to my blogroll and I'll be reading!