Day 1,136: “Mommy, I Hate Cerebral Palsy”

Madison is now 3 weeks post op from PERCS and she is shining! Everyone who works with her is thrilled with the growth she has been making, but most importantly Madison is happy with her new abilities… happy with her new glasses… and happy with her new haircut hahaha…and Jack’s too.

With new abilities, comes new awareness. Madison is very aware of how hard she works and how difficult things can be for her. We have always talked to her since she was very young about CP, why she needs certain mobility equipment and how she does things just a little bit differently then others. Now that she is almost 5, some of our answers to her questions just aren’t enough for her anymore…she wants to know more and she has an awareness about things not being fair in her eyes.

Tonight a conversation happened that I know was the first of many to come. It was gut wrenching difficult and bottom line…sucked. Madison was getting dried off after her shower and getting her pjs on for bed, while Jack was running all over the place trying to get calm for his bath. Madison looked at me and said “I’m mad” I asked her why and she responded “why doesn’t Jack get to have cerebral palsy too”. I then corrected her by saying “do you mean, why doesn’t Jack have CP like you?”. Madison then asked why She has it and Jack doesn’t. I then started the good old blanket statement “We’re all born differently and all do things in our own time” which was clearly not good enough for her from the look she gave me. She then asked again to explain why Jack and Nate can stand with bare feet and she wants to with them. So I decided to give her as much as I could without loosing it. I told her how all babies want to stay in their Mommy’s tummies to the magic number of 40 weeks and how sometimes if the babies can’t stay in that long that their bodies are still growing and arnt ready for the outside world so they can get sick and need help and sometimes end up with different challenges later down the road. I explained to her that she was born at 32 weeks and that something happened when she was born where she didn’t have enough oxygen and that’s why she has cerebral palsy. She asked me if she did something wrong to be born early (almost lost it here) and I told her no, that she was perfect and that it was out of our control. Madison then told me again how she wants to stand barefoot like Jack so I re-assured her that we want that for her too and believe in her that she will be able to do that one day and that’s why she goes to so many appointments because there are lots of people who believe in her and believe she will achieve her goal for standing barefoot like her brother. She then started talking about how so many things are hard for her and that she hates cerebral palsy and doesn’t want it anymore. I decided to switch gears and celebrate all the other parts of her. We talked about how smart she is and caring to her brother and how she makes so many people smile when they hear her laugh. We talked about how she is allowed to be mad that she has CP and how some days it makes me mad or sad too. But one comment she made was so amazing to hear…. she wanted us to know that things are still hard for her but since she had her “big surgeries” things are getting easier and that she really likes her “new legs”. We will continue to be open to these conversations (as hard as they are) so that Madison feels she has time and space to share her feelings about CP, both good and bad.