Today is World Cerebral Palsy Day.
World Cerebral Palsy Day is a social movement, of, by and for the CP community. The vision of World CP Day is to ensure that everyone with CP has the same rights, access and opportunities as anyone else. Through World CP Day, we will join together to combine our resources, energy and knowledge. We will share our stories and best ideas. We will tell the world … I AM HERE!
I know it has been a year since posting. I really feel bad about not keeping up with this page. Life has been busy to say the least. This year for World Cerebral Palsy Day, I wanted to share with you some thoughts on access and opportunities for kids with CP, mainly my kid.
Last year Mattie’s school had a Fun Run as part of their fundraising program. Having a “Fun Run” school fundraiser with a kid that can’t walk, let alone run is… a challenge. It’s always difficult to figure out how to make sure Mattie is included; this however might have topped the list. What else can you do but embrace it, come up with a game plan and make it happen. I could not be more proud of Mattie for walking her lap. (Side Note: I am thankful that Mattie’s school has opted for a Walk – A – Thon this year).
There was a time when I dreaded having to go to the grocery store with Mattie. Mattie had gotten too big to fit in the grocery cart. A trip to Publix consisted of having to push a cart and her in the wheelchair at the same time. This is not an easy task to accomplish. I finally decided to ask our local Publix if they would be willing to provide a Carolyn Cart (special needs grocery cart) for the store. The general manger was more than happy to put in the request. Several months later, Mattie and I head into to Publix and as we are walking in, I am greeted with a shiny new Carolyn Cart. I almost cried. It’s the little things.
I have always believed that we would figure out a way to make things happen for Mattie. I never want her to be excluded from anything just because she is in a wheelchair. Sometimes we have to get creative…
Even if it means carrying her on my back in a baby carrier to get down to the beach, holding her up so she can jump up and down in “muddy puddles”, walking her around so she can find Easter eggs like her brother and cousins, researching what parks have special needs swings since she is too big to fit in a baby swing these days or carrying her on the subway when it is too crowded to sit or have a stroller out. With some planning, creativity and determination we have succeeded most of the time.
Recently, Mattie has decided she wants roller skates for Christmas and wants to go ice skating. When she said this to me I couldn’t decide if I wanted laugh or to cry. I told her what great ideas those were as my heart broke a little. I love that she thinks she can do things other kids can do, but the reality is… there are going to be things Mattie can’t do because of her CP. I am not entirely sure how we can make either of these things happen, but I do know that we will try our hardest.
Throughout the first few years of Mattie’s life, everything seemed so difficult. There was so much worry about how best to help her, what therapies she needed, which surgeries were necessary, how would we find the time and how would we pay for all of it. Then things got a bit easier as we settled into a routine, formed a team of doctor’s we were comfortable with, and began accepting our new life with a special needs child. But now things are starting to get difficult again. Mattie is getting bigger and with that comes new physical challenges. Her wheelchair is bigger now, making it difficult to lift into the car. Some of her caregivers are starting to have difficulty picking her up, leaving a shrinking list of people capable of caring for her. As Mattie gets bigger, we as her parents are getting older, making it more and more difficult for us to physically support her as well. Knowing this trend will continue brings new uncertainties. We have held off buying a house or getting a new car because we aren’t sure what we will need. Do we need a handicap accessible house? A car with a wheelchair ramp? We’ve been saying let’s just wait and see. But the time has come to really start looking into making her life more accessible and in turn, maybe ours a little bit easier.
Cerebral palsy (CP) is the most common physical disability in childhood and is also one of the least understood. Cerebral palsy affects each child differently – no child is the same. As such, Mattie rolls to her own beat. It is not always fast, it is not always smooth, but one thing’s for sure, we will continue working to ensure she is able to continue to roll with the rest of us.
Want to help me build a global movement to change the world for people with cerebral palsy?
Here are a few ideas:
-Come join us as we host the 5th Annual Hope for Mattie Charity Golf Tournament on October 28th. We still have spots open for players, sponsors and volunteers. For more information click HERE.
-Help fund the desperate need for research for treatment and prevention. Some US based organizations that are funding research and leading national advocacy efforts for the CP community are:
-Make a direct impact on Mattie’s life and help fund her next round of therapies by making a donation HERE.
Help us celebrate World Cerebral Palsy Day and take action for the 17 million people across the world that are here, living with cerebral palsy. Thank you!