Little girls and colors. One step forward, two steps back.

All pink :)

When I first learned I was expecting a girl, I started thinking of all the things I was going to buy her! There are so much more colors to choose for girls! I chose the colors for her bedroom, and I had fun choosing the colors for all her dresses and bows. Sometimes it was impossible to stay away from pink, and, as she grew up, it became one of her favorite colors. At some point it seemed that everything she had was pink. Even her glasses were pink! But I never thought one day I was going to be faced with the choice for the color for her first wheelchair.

We went to that particular appointment to talk about a stroller for her. She had been complaining of pain and willing to walk less. For the past year she had been walking independently, without the walker. We were so happy for all she had accomplished. She still has the contractures on her knees, which are about 20 degrees now, and the ones on her feet, so she walks with her back bent. Doctors had warned us of potential back problems. For about a month she had refused to walk sometimes, and asked to be carried. Many times she refused to walk with the pre-school teacher to the school bus, and they thought she was just being stubborn. We noticed that sometimes she would stop walking and put her hands on her back, or on her knees, and we asked if they hurt, and the answered varied from "No, I'm fine" to "Yes, here (and she would then point to a completely unrelated body part)". She still has a very hard time identifying "pain". I think that for her whole life there was always some level of pain present, and she is having a difficult time judging the levels of pain. But we knew that, even though she couldn't express it, she was in pain. Her behavior changed a lot during that time. She became cranky, whiny, difficult to deal with. And we all just thought it was a "phase" she was going through. Until one day, my husband and I were talking, and we came to the conclusion that, if we were trying to keep up with our peers, be active like them, walk like them, all day long, while having less muscles and nerves on our legs to do that, we would be in a bad mood too. But she rarely complains, so we didn't know she could be so uncomfortable. We noticed that she was getting tired more easily, and at the end of the day her behavior problems were worse. We talked to the physical therapist about that and she agreed with us that she was in pain, and that we needed to have her use her walker again. With the walker she can support her weight more on her arms, and rely less on the legs. We left that appointment feeling defeated. First, it was really difficult for me to get her walker out of it's storage place in the garage, where it had sat for almost 1 year. It felt like we were going backwards. And I didn't think Gabbie would want to use it, because she COULD walk without it, her friends don't use one, why would she? 

The idea behind having her use the walker again is to save her joints. Gabbie will probably not have a surgery to resolve the contractures until she is about 16 or 17, because the surgery will affect her growth plates. We need to get her to that age as comfortable and with less pain as possible, hence the walker coming back. But even the walker can only get her to cover medium distances, such as going from the classroom to the playground, or to the bus. Whenever she needs to walk more, like a trip to the mall, or even just going to the park, we have to carry her or use a stroller. She will be 5 in a couple of weeks, so she outgrew her baby stroller. That's why we went to that appointment to talk about a medical need for a special stroller for her. 

As parents, we always see our kids as our babies, and it's hard to watch them grow. My older kids are now 18 and almost 20 and I still call them "kids"! But the reality that Gabbie is almost 5 and will soon need to be more independent was brought to us at that appointment. Instead of a stroller, she is getting her first wheelchair. To watch my baby sitting on a wheelchair for the first time, while they took measurements was something very painful. Not to her, she was very happy sitting on that wheelchair, as if it was a new toy. I was definitely not ready to have my baby on a wheelchair. In my mind, all I could think was "BUT SHE CAN WALK!". I cried a lot that night, and many times after that, and even now as I write this.

Gabbie and her friend Kinsley, two beautiful princesses

And then, Gabbie was the one to (again) teach me a lesson. When we gave her the walker she immediately started using it. That showed me that she was feeling such relief from pain when using it that she didn't even question it. The simplicity of children is amazing to me. She still forgets the walker behind once in a while, and starts walking away without it, but she doesn't fight the idea of using it. Gabbie taught me that mobility must be practical. It's very difficult for parents to accept the idea of "effective mobility" because we want our kids to do everything the "normal" way. And it is "normal" to walk - but walking may not be key to success. It's definitely not effective nor practical in her case. And I need to come to terms with that. The fact that I'm still crying while I write this post is proof that I haven't. Yet. I'm gonna need some time. 

In 5 weeks or so we will go pick up her first wheelchair. There were not many choices in terms of color, and I was tempted to go with black. Black is classic, it is more discrete, But why should she be discrete? She will be 5 years old, and loves to be a little girl. She is happy, she is an extrovert, and I am sure that she will be as happy with her RED* wheelchair as if we were giving her her first bike. And I'm going to be trying really hard not to shed more tears, and to be happy for her. Because that's what mothers do. But it is still not a bike.

*only the legs of the wheelchair are red, the body is still black. Can you imagine a red wheelchair? ;)