Loving Cerebral Palsy
March is Cerebral Palsy awareness month. I usually don't participate in awareness months just for the simple fact that it's an everyday for us. However, this year I decided to do a couple things. One is to write this blog post, the other is private reflection throughout the month. It's been awhile since I have taken some time for reflection. I think it's important though. Look back, not to dwell on the past, but to see how far we have come overcoming hurdles and challenges. Look back at all the memories we were able to make that we never thought possible.
I had a lot of misconceptions about cerebral palsy before I researched it and then lived it. For example: I thought there was only one kind, therefore, I immediately thought that Andrew would be in a wheelchair. I had no idea what caused CP, I thought it was just something people were born with. I also thought that it only affected the arms or the legs, not the inside of the body, not the brain and certainly not learning. Here are a few things that I learned when researching it.
1. Cerebral palsy is caused by abnormal development in the brain or damage to the brain.
In Andrews case he had a stroke sometime around birth. The stroke happened on the right side of his brain, therefore effecting the left side of his body.
2. There are many types of CP but the three main types are:
Spastic - Tight muscles of the affected limbs
This could be either side referred to as hemi, both arms or both legs or all four limbs.
Athetoid - Affects the ability to control limbs
Ataxic - issues with balance and coordination
For each of these there are a broad range of symptoms and severities.
3. Having CP does not automatically mean you have intellectual impairment.
Unfortunately, Andrew does but not all kids do.
4. CP doesn't get worse. There are secondary conditions, such as swallowing disorders, speech issues, and others that are caused by CP but the CP itself doesn't get worse over time.
Some of you may have already known this. Some of you may not have. I did not know any of this when Andrew was diagnosed. Of course, I googled CP for HOURS, I cannot even tell you how many hours. This is just the tip of the ice berg of what I learned. I was so relieved when I read and the therapists confirmed he would be able to walk and not be in a wheelchair.
But you guys, here's the thing, when you research something try to remember that may not be what happens in your situation. I believed the research when I read that he would walk and that worked out but there are so many other things I read didn't work out the way I wanted. Each and every time I was let down. Research is great for creating a guideline but it doesn't give real life situations. It doesn't give you the real stories of people who are affected by this every single day along with their families. That is what blogs are for, that is what talking to people is for, that is what support groups are for. Believe it or not I had to learn this. I had to learn this. Sad to say it also took longer than it should have because I wanted my child to be "normal." Don't do what I did and let research determine how to live your life.
Finally, I want to say, I am grateful. Tears are flowing right now but I am so very grateful for our journey. I am grateful to CP in so many ways I can't even begin to express on here. That might sound strange to most of you. I understand, when I realized it, I thought I was crazy. So often the plans we make in life don't work out. We want an answer. We want to know why. We will not rest until it is answered. But trust me when I say, no. No answers and no why you guys are not going to run my life. I will live life with my family and we will be happy despite our challenges. I will live life and accept my child for who he is not what he has. I will love and be loved. I will find joy. I will rest.