My Life with Cerebral Palsy

Did you know that March is National Cerebral Palsy Awareness Month? Me neither, and I’ve had cerebral palsy my whole life!

My Life with Cerebral Palsy

Having cerebral palsy isn’t something that I usually write/talk about and I’m not sure if I’ve even mentioned it on this blog (and I’ve been blogging here about 5+ years). However, because 2017 is my year of courage, I am kicking fear in the butt and sharing a little about it.

What is Cerebral Palsy?

The Oxford Dictionaries define cerebral palsy (CP) “as a condition marked by impaired muscle coordination (spastic paralysis) and/or other disabilities, typically caused by damage to the brain before or at birth.”

I remember being told years ago that my CP was caused to a lack of oxygen to the brain either before, during, or after birth. However, it is now believed that only a tiny fraction of people get CP from a lack of oxygen. Most people get CP from some type of abnormal brain development or brain damage while the brain is still developing, again, usually before, during or shortly after birth.

One thing about CP is that it is not degenerative. In other words, the condition does not get worse over time. Particular symptoms related to CP may get worse over time but the brain damage itself doesn’t get worse.

How Cerebral Palsy Affects People (Me)

Cerebral Palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.” (Cerebralpalsy.org)

The effects of Cerebral Palsy can range from the very mild to the very severe. A lot of people with CP have other conditions and/or complications related to having cerebral palsy. Some people with CP need total care and help in functioning and some do not need any help at all. In fact, cerebral palsy is as individual as the individual who has it.

Cerebralpalsy.org explains cerebral palsy perfectly. It is NOT contagious, curable, progressive, hereditary, or life-threatening. It IS chronic and permanent but it is also manageable.

As for me, I have a mild case of CP. At first glance, no one would ever know that I have cerebral palsy, until I start walking. I have a deeper arch in my spine than most people and my right leg is turned in at the hip all the way down to my foot. It is not as bad in my left leg. I walk “funny” and have balance issues. Sometimes my leg gives out and I fall. :/ Besides this, my muscles are weak, I don’t have the best coordination, and my muscles contract and spasm a lot, especially at night or if I sit or stand for any length of time. I also have other issues related to the cerebral palsy but I won’t bore you with the details!

The one thing I want to make clear is that people with cerebral palsy are not “retarded.” I hate that word on so many levels. It is true that cerebral palsy is a neurological condition caused by damage to the brain. BUT, that doesn’t mean a person with cerebral palsy can’t think for herself, or is “stupid.” Even people who have more severe cases of CP can be very smart.

The other thing I want to make clear is that people with cerebral palsy aren’t to be feared, avoided or ignored. Or mocked and made fun of. I can’t tell you all the names I was called growing up. We are people just like everyone else. We have feelings. We have our own feelings, gifts and challenges just like everyone else. And we deserve a chance – just like everyone else.

Living with Cerebral Palsy

I am not going to pretend that life with cerebral palsy was (or is) easy. From being sent from one doctor to another, the exercises and therapy, and everything that comes with it, life was a struggle. I was (and to some extent still am) almost always in pain, especially in my legs. I was almost constantly bullied school which made me terribly self-conscious and lonely. By the time I was in high school, my self-esteem was virtually non-existent. I have struggled with anxiety and depression.ย  Truly, the only place I really felt safe was at home (or Church, but that’s another story!).

Having said that, I am not going to pretend that life with cerebral palsy was (or is) that hard, either. I was blessed with a crazy, loud, and close family with lots of aunts, uncles, and cousins! My parents gave their all to us, and to me. They are the ones who dragged me to all the doctors appointments. My mom had to deal with my screams and resistance to the eye patch and exercises I had to do. Best of all, they didn’t treat me any differently than my sister and brother. I got in trouble and they put up with my *very* stubborn streak (I prefer the term persistent)! They made a good life for my siblings and me. I AM normal and I WAS normal to them. It didn’t matter to them that I walked funny or had no balance or couldn’t see well or any other issue I had. I was me and that was enough. And, although I didn’t have a lot of friends, the ones I did have were GOOD friends, and I am still friends with them to this day.

And guess what? I am stronger and better for having cerebral palsy. I have the faith in God that I have now because of it. Cerebral Palsy has made me who I am today, and that’s a good thing!

Why I am Sharing All This

First of all, like I said at the beginning, March is National Cerebral Palsy Awareness Month. I want to bring awareness to CP, not just because I have it, but because it is important. Everyone wants to be “known” or “seen” for who they are and not what the stereotypes or what misguided perceptions say they should be. People with CP are no different. Well, I can’t speak for everyone who has cerebral palsy but I know what I believe to be true.

Secondly, I wrote this for YOU. I want to encourage you. If you are going through struggles, no matter what they are, you can and will get through it. If I can, you can. I have come out of my struggles a better and stronger person and you will too. There is no doubt about it. Trust in God and trust in yourself!

Never forget: YOU matter. YOU are necessary. YOU are a gift. Don’t let anyone ever tell you differently.

UPDATE A great resource: Cerebral Palsy Guidance. I was recently contacted by the editor of this site and as soon as I started reading it I knew I wanted to share it. It has tons of great information plus personal stories that are so inspiring! Definitely check out this website. ๐Ÿ™‚

Another great resource is the Cerebral Palsy Group. In particular, it gives a good overview of the history of cerebral palsy and causes of cerebral palsy.

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P.S.

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7 Quck Takes: Random Stuff Edition

— 1 —

I accidentally missed the voluntary blackout to stop SOPA/PIPA on Wednesday. ๐Ÿ™ Are YOU familiar with SOPA and the possible consequences it could have for you? For your blog? For your freedom of speech? Or your access to many different sights on the internet, such as Youtube, Wikipedia and popular mainstream sites?

— 2 —

If not, I URGE you to take a look at the following sights. Or, do your own research. Consider writting to your representatives and ask them to STOP SOPA or PIPA from passing into law.

Stop Online Piracy Act

PDM Editorial

Video ( A little over the top, but explains SOPA very well.)

— 3 —

Another thing weighing on my heart is the plight of this little girl. Apparently she is being denied a transport to save her life because she is disabled. I don’t know all the details. I don’t know both sides of the story. And know that many people are denied transplants for many different reasons. But, if what this girl’s mother is saying is true, than shame on the Children’s Hospital of Philadelphia. To deny a person the chance to live or to to have a better life because he or she has a disability is sick.

— 4 —

I think I’m a little over sensitive to the above because I am disabled. I have mild Cerebral Palsy. I’m fortunate. My condition is more mild than most. At first glance, you wouldn’t even notice that I have CP. But I do, and Iย  have physical issues that I have to deal with. So, I guess the thought of any disabled (or “challenged” person – be it mental or physical) person being denied care strikes close to home.

— 5 —

On a happier note, I got a Kindle Touch for my birthday! It arrived on Tuesday and I couldn’t be more thrilled! I’ve been wanting a Kindle for a while now. I’m having a blast finding books upon books to download. It’s going to take a lot of discipline NOT to snuggle in a corner to read all day! ๐Ÿ™‚

— 6 —

My son starts back up with karate tomorrow. Well, if we don’t get the freezing snow and sleet we are supposed to get. I hate driving as it is and I won’t drive in snowy, freezing weather unless I.HAVE.TO. And with karate, I don’t have to! In any case, it has been hysterical listening to him practice: jumping around the house “karate chopping” everything within reach, and screaming “KEEYI!”

Karate stance

Taken a few months ago after one of his Karate classes

— 7 —

Finally, I’d like to wish one of my closest friends, Terry, a happy birthday today. ๐Ÿ™‚ We have been friends since the summer of 1982. (Yep, that’s almost 30 years we’ve been friends, folks!)ย  She is a great gal and I am blessed to have been her friend for all these years.

Terry & Jen

Terry is on the left and my other friend Jen is on the right

For more Quick Takes, visit Conversion Diary!

10 Random Things I Want to Learn Before I Die

Just for fun I thought I would share some things I’ve always wanted to learn. Most of the things on the list are crafty things. I don’t consider myself crafty by nature, but I do have a desire to try! For more fun top ten lists head on over to Oh Amanda’s.

1.Fillet a fish. You’d think since I grew up in New Jersey, I’d know how to do this. No can do. I’ve caught my share of fish, but never had to fillet one, so I didn’t. Why would I want to learn to fillet a fish? No reason, really, just because I don’t know how!

2. Sign language. I’ve always been fascinated with sign language. When my son was a baby I got a baby signing book out of the library and he learned to sign some basic words before he could talk. Once he started talking, he wanted nothing more to do with sign language. Still, it would be fun to learn if I had someone to sign with. ๐Ÿ™‚

3. Latin. It turns out that I will be learning this sooner rather than later. My son and I practice a few prayers in Latin a few days a week, and recently he told me he wants to learn more Latin. If I can find a program geared toward young ones, I’ll probably get started with it.

4. Ballet. If you knew me, you might not be surprised about this, but you’d might laugh. You see, I have mild Cerebral Palsy, and so I don’t at all have the leg strength or flexibility for ballet (BUT, I can walk, Yay, me!). I absolutely love Ballet, though and can watch it for hours. The music, the costumes (most of them, anyway), the dancing, the story; it’s all magical to me. So, even if in reality I won’t ever learn ballet, I can still want to learn. ๐Ÿ™‚

5. Irish Step Dancing. The chances of learning how to do Irish Step Dancing is pretty much nil; but, I’m adding it to the list anyway because it’s so much fun to watch!

6. CSS (Cascading Style Sheets). I know enough CSS to be dangerous. lol! Mastering CSS would be very beneficial for my business, so I really want to make the time to learn this soon.

7. Drawing and painting. Some day I would love to take a beginner’s drawing and/or painting class. People who are creative and can use a brush to create beauty amaze me. I would love to try my hand at playing with colors, textures, etc.

8. Quilting. Quilts are so beautiful – and comfy! I love how some of the patterns seems quite intricate and detailed. That’s right up my alley! I have a good eye for detail and think I would enjoy the labor of creating a quilt.

9. Sewing. A few years ago, a friend of mine helped me sew a baby’s hat for someone and I loved it. It would be so much fun to be able to learn to sew my own clothes or curtains or whatever I wanted. I think I just may put down a sewing machine on my wish list for Christmas. ๐Ÿ˜‰

10. A Musical Instrument. When I was with the sisters, I started learning to play the organ. It was a lot of fun but I never got comfortable enough to play in the chapel. As a matter of fact, whenever I had to play with someone watching I’d freak out and not be able to play at all. After I left the sisters, I did have an organ for a while before I was married, but I never had time to practice. The instruments I would most love to learn to play is the harp (Yep!) or the clarinet. Who knows, maybe Andrew will want to learn an instrument and I can learn with him!

Your turn! Why don’t you share in the comments some of the things you’ve always wanted to learn?! Don’t be shy!