The impact of disability on the children

I wonder about this a lot. Will my children grow to resent my disability? I'm sure the day will come when they will wonder why they had to have the mom with a disability. Most kids go through that stage of wondering why they have the parents that they do. My kids have my disability added to the mix. Will they hate me for having them when I'm not the "normal" parent? What's normal anyways???

My oldest daughter, Kierra, is turning four next month. The other day my husband, Michael, brought up an interesting observation. He noticed that she tends to prefer the "broken" or "not whole" toys and things. For instance, she has a Rescue Hero figurine that just won't stay standing up. It has become one of her favorites and she will use the other figurines to prop it up. It made both of us wonder if this is because of me. Then I think further and wonder if my disability will increase her empathy, or if she will just eventually resent all of the things that she can't do because her mom can't do them.

I'm reminded of last summer when we decided to take our girls to a local fair. We parked the car and started walking. I had Ali (Alessandra, our now 2.5 year old daughter) in a stroller so that I had something to push and lean on. I struggled to get as far as we had gotten, and was quickly reaching the end of my rope. We were most of the way to the park when I looked up and saw we would have to go uphill even further once inside. I just couldn't do it. Yet there was no way that I was going to ruin the fun for my daughters that were looking forward to a pony ride. So I told Michael to go ahead and take them in and I would go wait in the car. I pushed the empty stroller back to the car, fighting back tears the whole way. Once I got inside, I let myself cry. Cry in anger - that I had to miss out on seeing my daughters have fun. Cry in frustration - that I couldn't do a thing about it. Cry in guilt - that my husband had to take over the task and do it alone. And cry in loneliness - that I had to sit alone and couldn't be in on the fun. I thought a lot in that time until they came back. I wondered what the future held and whether or not my children would ever understand the love I had for them - how I risked my health to have them. Or if they would just view it as selfishness on my part and wish they didn't have to deal with my disability.

Such dark thoughts....

Then I see Kierra and Ali playing with my leg braces (AFOs) like they are the coolest things ever. Kierra asks about when I was little, and is fascinated about when I tell her that I used to be able to run and jump and play just like her. I can tell this scares her even though she can't put it into words. If it happened to me, couldn't it happen to her? Truth is, it could. No one knows. Yet I can't live every day, afraid that I'll be worse the next day or that one of my daughters will become sick or disabled. I have to enjoy the now...and remind myself to take things one step at a time. My husband and I do everything we possibly can for our children. All we can do is hope it's enough.