Madi Moves

Madison is 5 and she wanted a donut theme for her party with all her friends…. so here is her donut party!!!! Happy Birthday Madi!!!

Five years ago we became parents.

I was getting ready for work when my water broke. I was 32 weeks pregnant, went to the hospital in denial thinking they would tell us a solution to stop labour, send me home and rest. We stayed.  18 hours later Madison was born. 4 pounds, 4 ounces – tiny and mighty. Madison stayed in the NICU for one month and then we got to bring her home!

Madison has brought more joy to our lives then we ever thought possible. She is beautiful and brilliant and knows how to make you laugh. She is a loving, kind big sister and is always wanting to be by her brothers side. We are so grateful for how determined she is to move every mountain in front of her.

She was thrilled to spend her birthday at school today. She heard her name over the morning announcements, got to pick a prize from the treasure box and had cupcakes with her class.

After school Madison went to Crockadoodle to make a birthday hand print tile. She then spent the evening playing with Jack, having a special birthday dinner, eating cake and opening presents!

Thank you for all the messages and well wishes

Madison had a great day at March of Dimes today. She loved exercising with her friends and today they went outside to have a teddy bear picnic.

After conductive ed, Madison spent her afternoon with Janine and Suzanne and visited Great Grandma Gregoire.

The golf tournament is only a few weeks away. While Mommy went to an organizing meeting, Madison and Jack had a super fun visit with Pam and Medford for pizza night! They made their own pizzas with lots of toppings and loved it!

The theme of Madison’s weekend was walking & relaxation. Saturday Madison had a fantastic session at Smile therapy with a focus on walking and then roasting marshmallows at Nate’s house. Sunday Madison did some walking practice and then had a nice dinner at Nana & Papa’s. All the other in between time was spent playing and being silly with Jack.

Madi had a great second day at school. She said her favourite part of the day was playing the octopus tag game during gym class and practicing her writing during centres time.

After school, Madi and Nana braved the heat and went to get smoothies and then off to physio! Madi worked on strength building and walking with Kate while Nana cheered her on!

After physio, she went for a checkup with her doctor to check her incisions and go through a general physical to check her growth… everything was all good!

Madi had a great first day of SK! She loved how so much is the same as last year (teachers and classroom), she loved that so many of her friends are still in her class and she loved sharing about her summer. Her summer memory she shared with her class was spending time with Nate at the cottage and painting rocks. Madi is excited to go back tomorrow and is super thrilled Nate is at the same school.

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.

 

 

Madison had a blast at conductive ed today – she got to dress up like Moana and do all sorts of activities around the theme of Moana while working on her standing, walking while carrying things and continuing to build strength!

This week with Mommy back at work and Madi with one more week left of summer, she is doing her own mini intensive from now until Thursday. Each day she is doing two therapies consisting of conductive ed, physio at Grandview or Variety Village and work with Jo-Anne at Smile Therapy for Kids. Thank you to all of our family who are helping Madison with her week of work while Mommy is back at work.

Today Madison had some fun being Belle the princess at March of Dimes while walking, practicing standing up and working hard for her 1:1 class. Thank you Fruzsi!

After some lunch she headed to Smile therapy where she did lots of great walking and working on her balance and weight shifting when taking steps. Thanks Jo-Anne!

After dinner she wanted to practice more walking while sneaking up on her brother to tickle him.

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.
Golf Website

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!