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.
Thank you for following Madison’s journey!
She would not be progressing and doing so well without all of your words of encouragement and everyone who has supported her over the past few years.
Here is Madi working on her falling and standing up, something that she wasn’t able to do two weeks ago before her PERCS surgery.
Her rehab program continues on – we are making a big push from now until Christmas to give her as much opportunity to access all her therapists and programs as much as possible. We will be able to do so thanks to the support of The Mike Gregoire Memorial Golf Tournament.
Registration for golfers and dinner guests is open!
We are in our final few weeks planning towards the golf tournament to help Madison with her post op rehab and we are looking for family and friends who would be interested in helping us out by donating items for the silent auction – big or small, we would appreciate any support.
Madison is working hard, but is finding time for some fun before back to school!
Madison was super excited for the theme at camp today…. princess dress up! She packed 6 different dresses because she couldn’t decide. She ended up choosing Ariel and later told us she hates that she can’t swim right now while her legs are healing, so she wanted to pretend to swim. Being at March of Dimes Camp has been an amazing way for Madison to get back on her feet and work hard, while having so much fun!
After camp, Madison headed home for some quiet time before heading to the basement for some more work. Claire was over today to do some work on Madi’s walking, balance, getting up from the floor, core work and some stairs. Madison was excited to show Claire the newest thing she has been working on… standing up from the floor! Every time she did it, it got easier and easier for her and she was thrilled, laughed, kept asking to do it again and again and wanted to show Jack. It was such a powerful and rewarding moment to witness Madison being successful with this skill.
It’s 11 days after PERCS and she’s up from the floor and walking! Madison has never been able to do this…she has attempted this skill hundreds of times over the past two years and today was the day it clicked for her.
In that moment all I could think about was her team of people….her specialists/therapists/cheerleaders/family… a group of 6 who have been with her along the way…they have supported us, challenged her and taught her everything needed to be able to rise up from the floor today and look Jack straight in the eyes and laugh. We are so grateful for the team of people Madison gets to work with each week. I don’t know where we would be without them.
After the kids went to bed, the first thing James and I did was sit down on the couch and talk about our amazing Madison…the second thing we did was email her group of 6… her amazing therapists, to thank them and share this video from today.