Wednesday, August 1, 2012

I'm not wanted

It’s been a while since I wrote a blog. I am swamped with life and it seems to be catching up with me a little more each day. But I guess that is the way it goes for a newly remarried mother of two who is also a full-time graduate student and freelance writer—did I mention it’s summertime and my school-teacher-husband and both kids are still out of school?

I also slipped away to Texas for a week to take Veronica to Camp Just Like Me. The camp is sponsored by Texas Scottish Rite Hospital for Children in Dallas and it is just for children and teens with Arthrogryposis. Yes, it's also the same camp where she fell and broke both legs last year. But she loves that camp and wanted to go back. I agreed that she needed to go back, too. That camp seems to bring out the very best in her and it’s always a life-changing event.

But this year was different than previous years. I had this weird feeling from the moment we got there that things were “off.” After the first day, I thought the difference was the change in ownership of the camp.

The family that used to own the camp is no longer there. It left a huge hole that was obvious from the moment we walked in the front door of the lodge—no big hugs from Scott and his family and no dogs running around outside. And not only were they not there, but there was a new group of camp counselors and a new group of staff from Texas Scottish Rite Hospital.

By day two of the camp, I began to realize that the change in leadership and counselors didn’t seem to make that much difference. We did pretty much the same activities. Everything was still fun. All the kids and parents had smiles on their faces. I thought maybe I was just tired, and for the first time ever, I was homesick. I finally had someone at home who missed me, and I could tell he missed me. I just wanted to be at home with my husband.

By day three I finally realized why camp didn’t feel right. I realized that there was no reason for me to be there this year. This was the first year when I didn’t need to dress Veronica. She didn’t need me to push her wheelchair. She didn’t need me to bathe her or fix her hair. Quite frankly, she made it very clear that she didn’t want me there when she asked me to not sit with her at dinner.

At first I was hurt. I mean, I spent all this money for travel and I took an entire week away from home and I had to use every free minute we had at camp to finish homework and keep up with my classes. I thought this trip would bring us closer, but I never felt more useless as a mother as I did sitting alone in the cabin while she was playing at the pool with her camp friends.

I’ve noticed that life has a way of slapping me in the face with reality just when I need it. On day four of camp, I went for a run before breakfast. I came back to the cabin to take a shower. The cabins have a large bathroom with 2 toilet stalls and 2 showers that face each other so that you are facing the toilet stall when you step out of the shower.

As I finished my shower, I pulled open the shower curtain to reach for my towel and dry off. I noticed a typical scene in the bathroom—4 feet showed at the bottom of the stall. At camp, it is rare to ever see the children in the bathroom stall without an adult helping them. Most of the children cannot use their arms very well, and they need help pulling their pants up and down or wiping themselves—some of them cannot get on and off the toilet without assistance. When you're a toddler, it's not that big of deal. But when you are a maturing young lady or man, it's uncomfortable at best.

Instead of feeling sorry for myself, I realized that I should be down on my hands and knees thanking God for helping my little girl to get to a place in her life when she doesn’t need me to do those things for her any more. Last year, I had to pick her up and place her on the toilet and help her with her pants. A lot of times I had to help her wipe herself, too. There is no privacy for these children. Nothing is sacred when you are disabled—you don’t get the privilege to say, “I want to go to the bathroom by myself today” or “I don’t need help putting on my panties.” Puberty makes things even more complicated--especially for girls.

I spent the rest of the day keeping a lot of distance between Veronica and me, and I felt great about it. And if I wasn’t smiling, it was because I was too emotional. I cried on and off all day long, and I didn’t try to hide it from the other parents this time. No one asked me why I was crying—most of the parents cry at some point during the camp because it is such an emotional feeling to see your child “acting like a normal kid.” And for some of us, this camp is the only place we ever get to see that.

On the flight back home to Savannah, Veronica asked me if we were going back to camp next year. “Probably not, sweetie,” I said. “What? Why?” she asked. I leaned down to her face and whispered, “Because you don’t need me to go to camp with you anymore.”

She didn’t seem too upset by this. I know she doesn’t want me to go to camp with her anymore either and she can’t go to Camp Just Like Me by herself until she is 13 years old. “How about we find a camp for you next year where you can go by yourself and then you can go back to Camp Just Like Me the next year?” I asked. The thought of sending her to a “normal” camp made my stomach churn, but I know it is the next step in her journey to become independent.

She shook her head and thought about what I said. “I guess so, but where could I go?”

And quite honestly, I didn’t have an answer to that. I don’t know what is going to happen each year—I never know what new obstacle will be thrown at Veronica. I know that she will never be “normal” and I’m okay with that. But for the first time in my life, I know that she is going to be okay. She is going to be able to live in the “real world” and survive without me. Life is always going to be hard for her, but I know she can handle it.

She will always be that sweet little baby who smiled and played despite the long leg casts and painful therapy. She will always be that sweet little girl who stood in front of her first grade class and said, “Hi, I’m Veronica and I have arthrogryposis.” But most importantly, she will always be that young lady who got up one morning at camp and dressed herself while I was in the shower and said, “Mom, can you please stay in the cabin today?”

And trust me; staying in the cabin alone is just fine with me now. I couldn’t be happier.


  1. Great post as always. Just remember, Kim; "Normal" is nothing but a city in Illinois...

  2. You GO 'Roni! I've always believed, and always will! Even the little girl that I knew back in Indian Hills, Colorado was MUCH stronger and MUCH smarter than "normal". Carry on, do great things, and remember you are blessed!

    Much love, Ms. H.