For those who remember the post I was pretty devastated. In one day I woke up with my little girl dressed in her Longhorn cheerleader dress just perfect in every way to suddenly having doctors tell us that she was permanently and severely disabled. The best doctors in the state were telling us things like she might have trouble learning to talk or write. We had social workers having us fill out forms for disability resources and our home became therapy central: physical therapy, occupational therapy, speech therapy, etc. came in weekly to the tune of 40 service hours a month. I had to throw away her cute shoes and get fitted with baby orthotics.
Faced with this reality I amended my dreams for her. Instead of hoping to put her dance and watching recitals I told myself she would find her own path in life. I realized in those days I shouldn't worry what I thought my kids life would be. What matters is giving them the best chances possible. Fast-forward and in time she learned to talk and do a lot of the things we worried CP would hold her back with. She grew out of her orthotics (picture above shows them) and so we decided to try a new type of therapy which is called Kinesio Tape (look closely in the picture below and you can see the pink tape on her legs which is a special athletic tape we apply every three days). We tape her muscles to help strengthen them.
The challenges CP causes are apparent in each milestone. Rachel falls often and has trouble with muscle control. It makes for challenges in learning new things like talking and holding a pencil. What amazes me though is to be quite honest, with good intense therapy we have been able to overcome most challenges. I attribute that too Rachel. Ironically because she has hypertonia (tight muscles in her arms and legs) we noticed she could do things other kids couldn't like hang upside down with her legs on the monkey bars or with her little arms. It was odd to see how something so disabling could also provide unique talents.
I should have known that the doors I closed she would re-open. Miriam and I started a year ago watching a show called Dance Moms. Rachel decided she would be a dancer like Paige or Chloe from that show. She would ask me to record it and than when I would replay the dances she would dance in our living room. Thinking this was just a stage we pretty much let the year go by and we would let her watch the show, she would dance, and she was happy. Than she started choreographing dances with specific steps and movements. It was when I realized that she really did want to do this. She would dance for long periods of time and go over steps: wiggle wiggle, slide this way, slide back, jump, clap clap, etc. She would get mad if she forgot a step. In her informal gym classes she learned to do little cartwheels and loved to do what the big kids could do.
So against the odds Rachel is now officially the youngest at her gym and dance studio. She takes ballet and than gym. She just started this weekend and it is official, I'm a Dance Mom. I'm just so proud. I can't believe she is doing it and the best part is that she loves it. She has been convincing me for a year to start her in class. Her teacher was surprised how on day one she was doing everything the teacher told her to do. She never wandered away like other 3-5 yr old girls do. She didn't want to leave the dance studio when dance was over and than the same at gym.
I don't know if Rachel will still want to dance years from now. But where a year ago I thought the chances of her dancing in New York were impossible now who knows... I am starting to realize every day there is no doctor who can determine a child's fate. There is not a label we can place on kids. It is up to our children to carve their own dreams. I know things are a challenge for Rachel. I see her struggle sometimes with a body and a mind that is just not working together. But it is her heart that doesn't give up or get discouraged. She doesn't think she has anything wrong with her and that the sky is the limit. For that reason I know CP isn't going to stop her. Nothing is impossible for my daughter and no longer will I ever shut a door of opportunity for her.
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She looks so happy!!!
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