Celebrating World CP Day!

World Cerebral Palsy Day! 

This day is not just to raise awareness, but also to celebrate the lives and achievements of both those living with CP and the amazing people/ organizations that support and love them. The goal of the day is to create a powerful voice for the CP community in order to enhance their influence on the world and act as a catalyst for social changes. 

The other day, I ran to the grocery store because Ashlynn was teething pretty badly and, of course, I was inconveniently out of children’s Tylenol. I walked up to the entrance of the store and there was a young girl and a severely disabled man in a wheelchair out front. They were collecting for a cerebral palsy camp that was actually right down the street from my parents’ home. It’s funny how when you know the battles people have gone through, you look at them much differently. Before Ashlynn’s diagnosis, I may have looked at him with empathetic, maybe even sympathetic eyes and thought “Wow that is so sad. It’s terrible he has to live that way.” I may have even looked the other way, in order not to make him, (or myself – if I’m being honest,) uncomfortable. But now, I look through much different eyes. I see him as a true warrior; a victor. I now know what it takes just to be sitting in that wheelchair; to be putting yourself out there in front of people who may not understand what you’re going through. I see a true fighter.

People fear and shy away from the unknown. Well, in addition to sharing our story, this blog serves as my way of creating a bridge; my olive branch, if you will.  This blog is my way of closing the gap and showing it’s OK to be different. It’s OK to ask questions. It’s OK to say hello. When my husband and I decided to be public about our family’s journey, it was not only to share our testimony, but also to show others who know nothing about disabilities like CP, that you don’t have to be scared, or look the other way. It’s ok if your child innocently and curiously points at someone using a wheel chair. Instead of “shoo-ing” them away or discouraging this curiosity, I’d like to inspire you to take that opportunity to teach them about differences.  For example:  “Some people just move differently.”  Simple. If we begin to introduce these concepts when they are young, it will just become second nature.

I thought today it would be appropriate to share a few things about what it’s like living with Cerebral Palsy (CP), as a parent and for our daughter Ashlynn Grace.  To understand fully what it’s like, you have to know what CP is. Cerebral Palsy is a brain injury.  It’s not genetic and it does not necessarily mean there are cognitive delays. Every case of CP is very different and that’s because it all depends on the location and extent of the brain injury. Ashlynn’s injury affects the motor areas of her brain. More specifically, her damage is near the occipital lobe of her brain near the optic nerve.  Both her arms and her legs have been affected. She has a generalized increase in tone, which means it’s sometimes hard to get her arms to relax when she tries to move them or when she gets excited. She was born with pretty severe strabismus (crossed eyes) due to the increased tightness of specific eye muscles.  But, ever since she had surgery to correct this, she can see so much better! I can tell because she smiles so much more now at people farther in the distance.  This is just one example of the amazing interventions available to us today to improve the lives of people living with CP.

There are many reasons why babies are born with CP. Some of the reasons have to do with injury due to preterm birth, infection, or brain bleeds.  It’s extremely difficult to pin-point how, when, and where the injury and damage occurred.  Some occur in the womb and others at the time of birth. As a mother, that is a tough thing to think about.  Carrying a healthy baby to term is the mother’s very unique job.  When things don’t go perfectly, there can be immense feelings of guilt to overcome.  For me personally, I still have a hard time letting that part go. We will talk about that more at a different time when I am ready… and besides, today is a celebration day!

Our brain has many neurologic pathways that communicate to our body how we should move.  When those pathways are damaged, you see motor difficulties or delays. The best way to think of this would be to imagine having to use your much weaker, non-dominant hand for everything. As you might imagine, that takes A LOT of thought, concentration, and practice. We knew Ashlynn would most likely receive a CP diagnosis very early on, so we wanted to take full advantage of neural plasticity (this refers to the brain’s ability to “re-wire” itself and adapt).  The amount of work that Ashlynn puts in at this young age will directly affect how she will move later on in life.  Hence, taking her for therapy 5 + days a week, and, hence my new job of “Mommy PT.”

There are many “levels” of CP that range from very severe, to mild, to high motor functioning. For some people, you may never even know they are living with CP.  Others have difficulty speaking, moving, eating, and/or taking care of themselves.  It’s really hard to tell where our daughter lies on that spectrum right now, but a good indication will be if we can get her to sit up unassisted, by the time she turns two years old. A lot of times, professionals use that specific milestone to tell if a child living with CP will be a walker or not. I don’t care if I’m 90 years old, I will always believe our daughter will walk. I will never lose that hope for her. I will never stop fighting for her independence and happiness. Not that she needs to walk to be happy, but it’s just that I want her to be able to do anything she chooses to do.  As of now, she’s doing great with sitting up a little bit here and there. She keeps making progress and that’s a beautiful thing.  Keep going, baby girl!!

For us, living with CP has been all about learning and understanding what we are up against at this point. Taking it day by day.  We find the things Ashlynn can do, and work on the things she cannot do as of yet.  We are always pushing forward. It’s really easy to let yourself get stuck in a tough place mentally. You can be flooded with a lot of “what ifs.” One of the main things I have had to come to terms with is asking myself, “What are you so afraid of?”  I’ve actually written out my fears, only to crumble up the paper and release them. Sometimes the things we don’t say out loud hold a lot of power over us. When we speak them, we can release them and eventually move on. My strong faith is a huge part of our journey as well. I know that no matter what – we can do this. No diagnosis, no name, no condition is more powerful than our God. I also know God only gives us things that we can handle. That’s not to say there are days I wish we didn’t have to weather this… or days that I don’t cry because Ashlynn had a really tough day at therapy. My heart aches for her when it’s hard. And trust me, there are a lot of those times. But, I choose to see all the good. All the success and all the happiness. I am hopeful I can pass this perspective down to her because in the big picture of her life, this is not about me or how I feel, it is about her and how she feels

I think every parent can relate when I say the hardest part for me is seeing her struggle. This is something I can’t fix.  It’s something we have to live through. That can bring pain at times. But it also brings so much joy and perspective for which I am eternally grateful. Every little bit of progress is a small victory. My hope for my daughter over everything else physical, is that she is happy. I want to show her to be proud of who she is. I want to highlight the gifts God has given to her. I want her to lack for nothing. I want to celebrate both her, and my son, for how unique and special they are to me and to this world. So from mother –to- mother, or parent -to -parent, I am not much different from you, it’s just that we will have a different kind of perfect and we will take a different path to get there.

Thank you for taking a moment to read my blog for World Cerebral Palsy Day! If you are interested in our whole story, you can click back to my very first entry “A New Journey.” The entries are written chronologically in a series from that point on. Don’t forget to say hello and let me know where you are reading from! Thank you for stopping by today to help us celebrate World CP Day!