Archives for September 2008


I’ve been struggling for about a week to write a post on the topic of “Healing.” Barbara over at Therextras is doing a blog carnival on the topic and I SO badly wanted to participate.
I’m not really a writer, though, and I struggle to write on an assigned topic .
I’ve probably written two pages on the topic—trying my best to put into words the feelings I have about my child’s birth and how I coped with it. This is not my best, but it’s what I’ve got.

I know that Charlie’s birth changed my life dramatically, but I have no measuring stick to compare it by. Every person’s life changes when they have a baby (except maybe JLo—the woman just ran a marathon—clearly she has a staff). I have no way of knowing whether or not my feelings were that different from the average person’s.

I do know that I had a lot of anxiety about Charlie’s future—would I be able to take care of him? How bad would his disabilities be? In some ways, just moving forward into the future has changed that. Some of my greatest fears came true—like epilepsy and vision problems—but many did not. Charlie is responsive and smiles and laughs. He loves toys and eats like a horse. He has a personality and preferences. Also, however, by having some of the worst happen, I found that I would survive. My husband and I talked honestly about Charlie’s future; we weighed some worst-case scenarios and decided that we could live with them.

We did what we could not to wallow in the grief. We watched John Stewart and allowed ourselves to laugh. We went out to eat and watched funny sitcoms. We invited people over to eat dinner. In short, we went on with our lives.

I think it’s important not to let your child’s disability define who you are. We are all more than one thing. I am a wife, mother, Christian, sister, daughter, teacher, and friend. It is always important to remember this and it is just as important when you have a loved one with a disability. You will inevitably feel resentful if your life is being lived for someone else.

I think that it’s important to realize that having a child with a disability is the same as so many other things in life: It’s not what you wanted, but it’s also an opportunity. When I took a job teaching inner-city kids, it wasn’t something I thought I could do. I’d been warned that it would be difficult and being a young, privileged woman didn’t help my cause. But I did it. I took that job and I am SO proud of the work I did there. I grew as a professional and as a person. I changed in many ways for the better and found out things about myself that I didn’t know before. I became stronger.

Being Charlie’s mother has been like that. I am a better person, and I don’t mean it in that bitter way that I sometimes see people writing about. I don’t mean that I’m a better person because I had to give up my selfish lifestyle and live for someone else. I’m a better person because Charlie inspires me. He ignites my passion and fuels my determination. I’m not a better person because I take care of my child—that just makes me a mother. I’m a better person because knowing Charlie has enabled me to grow and change in ways that I am proud of.

I’ve come to realize that perfect healing probably isn’t in the cards for Charlie or me. We will go forward carrying the scars of our journey. That doesn’t make us less, and hopefully we can use what we learn to become better than we were.

I have this obsession with teen dramas and most recently I’ve been on One Tree Hill. Today one of the main characters gave a speech and one of the things he said really rang true, “Maybe you’ll get everything you wished for. Maybe you’ll get more than you ever imagined.” I think that about sums it up.


So, remember how I said the other day that I really wished Charlie could get one of those walker/treadmill combos?

Well, today Charlie’s OT came, and she actually works for an agency in the ARC family. She said that a family was getting ready to donate a Walkable to the facility where she works. If you clicked on that link right there you might be saying, “Holy crap, that thing costs three grand.” You’d be right about the holy crap part. So, our OT immediately thought of Charlie when she heard about the donation. We’re probably going to buy a treadmill somewhere (classifieds/Craig’s list), but HELLO??? I think the universe heard me. I don’t want to get my hopes up until I actually see the equipment in my home, but this would be so awesome.


Progress and Stuff

Charlie and I have had head colds this week, so I’ll use that to explain why I haven’t been posting. Truthfully, I feel pulled in a lot of directions and it’s hard to organize my brain enough to put together a meaningful post.

Charlie is making some progress and I thought it was worth noting. Charlie is drinking from a sippy cup by himself (on occasion). He’s understood the concept for a while, but hasn’t been strong enough until recently. Feeding is going well. He’s been eating two full meals and either a snack or a third meal every day. It’s getting to the point where he complains if we’re all at the table and he’s not getting something to eat. He’s also getting more than twelve ounces of liquid every day. He hates to drink, but we’re getting pretty close to twenty ounces on some days. He’s chubbing up nicely and my back is sore as a result.

We continue to work on the commando crawling. He’s getting better at it, but he does seem to drift to one side–I’m assuming that this is because one side is tighter than the other. The most exciting part is that he seems to be needing less and less input from me to go–hopefully, he’ll be going without me one day.

Supposedly we have a new speech therapist and I’m just waiting for her to call. I hope this is a good fit for us because I HATED the idea of “firing” the other girl.

We’ve started doing “math” with Charlie and he really enjoys it. I enjoy it too since math is always easiest to plan for. I have lessons plans plotted out from now til the end of the year.

The final bit of news is that I think that Charlie is ready to begin learning how to walk. My family was pretty incredulous at this–how can a child learn to walk when they can’t crawl? The thing is, when your child has a host of issues, you need to begin early and not necessarily after the completion of the last developmental stage. I am hoping that ABR will improve things, but I can already see that his right arm may inhibit true crawling. Anyway, they make walkers that have little sling seats and I think that something like this might be the key to getting Charlie up. He loves to stand with his Daddy and he’s pretty good at holding himself up with his arms. I’d love it if we had a place around here that had a treadmill and an overhead support system, but I’m not sure they exist in my area.

So. . . that’s what we’ve been up to.

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