Day 415: To Cure or Not to Cure, That is the Question

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So March is Cerebral Palsy and I feel like a total slacker. I meant to spend this month blogging about my disability so of course, depression reared it’s ugly head on top of the news of another school shooting and predictable inaction from most of our government because it wasn’t their child who was involved.  When I’m dealing with my depression actively as opposed to doing the maintenance required to live my life with it as part of my reality I’m less likely to want to put the effort into educating others. In an effort to do something constructive and take advantage of a day where my depression isn’t too bad here are some things you probably don’t know about Cerebral Palsy in general and my particular experiences with it specifically. All statistics and numbers come from a fact sheet that you can find at the Cerebral Palsy Alliance website and refer to the US unless otherwise stated.

General Facts

  • A baby is born with Cerebral Palsy every hour.
  • It is the most common physical disability in childhood. (I believe the second most common is Spina Bifida but don’t quote me on that.)
  • Cerebral Palsy is an umbrella term for a group of disorders. It is a condition that is permanent, but not unchanging. (The permanent but not unchanging thing was always one of the hardest things for me to wrap my head around. What that meant for me was that I used to be able to use a walker at least some of the time when I was younger. I  haven’t tried recently but I’m betting I wouldn’t manage more than a few steps now.)
  • Cerebral Palsy is a lifelong physical disability, due to damage to the developing brain.
  • In most cases, brain injury leading to cerebral palsy occurs during pregnancy. (It can also occur during the actual process of birth as well if there are complications, such as the umbilical cord being wrapped around the baby’s neck, for example)
  • Cerebral Palsy, except in its mildest forms, can be evident in the first 12 to 18 months. (It is worth noting that children who sustain a brain injury after birth can be diagnosed as having CP  as late as 5 years old in some cases.)
  • Motor disability can range from minimal to profound, depending on the individual. (I am classified as a having a severe case of Cerebral Palsy, which is the step before profound, more on that later as well as why I  find these labels problematic)
  • It can range from weakness in one hand to an almost complete lack of voluntary movement requiring 24-hour care.
  • Children with cerebral palsy are likely to also have other impairments in addition to their motor disability.
  • Spastic hemiplegia, where one half of the body has difficulty with voluntary movement, is the most common presentation of cerebral palsy. Approximately 40% of people with CP have hemiplegia. (I have spastic quadriplegia which means everything’s affected in some way)
  •  There is no known cure. (People wonder why I struggle with self-acceptance. This statement right here.Why do we need a cure? Treatments and equipment that help us reach our full potential, yes. Services that take stress off our families and give more independence to the individual) yes. A cure to take away the damage as though it never happened? Personally, I’m not entirely sold on the idea for myself anyway.)

 

And Now Some Numbers 

  • 1 in 323 American babies is diagnosed with cerebral palsy.
  • 1 in 2 is in chronic pain.
  • 1 in 3 cannot walk.(Raises hand, this is me)
  • 1 in 2 has an intellectual impairment.(Honestly, this is the thing I would dread most about the possibility of having a disabled child I am much more comfortable with dealing with physical issues.)
  • 1 in 3 has hip displacement.
  • 1 in 4 has epilepsy.( I heard that comes out to about 80% and have known people with both CP and seizures, glad I  missed out on that one.)
  • 1 in 4 has a behavior disorder.
  • 1 in 5 cannot talk.( I can talk and language classes were always some of my favorites.)
  • 1 in 5 is tube fed.(This is the first time I’ve seen this particular statistic but I’m not surprised that it seems to dovetail with talking.)
  • 1 in 5 has a sleep disorder.
  • 1 in 10 has a severe vision impairment. (I wear glasses because I’m very nearsighted.)
  • 1 in 25 has a severe hearing impairment.( Nope, in my case my hearing is creepy good.)
  • Of all children with cerebral palsy, 40% were born prematurely and 60% born at term.(2 months and 10 days early, 4lbs and one oz weight at birth)
  • Globally, approximately 17 million people have cerebral palsy.

Me & CP

I want to talk directly to the parents raising children with Cerebral Palsy for a minute. Thank you. Parenting is hard, parenting one of us is in many ways something different altogether. I remember when I  was small and the therapist was trying to teach me how to crawl on my hands and knees it hurt to put weight on my knees. I’m not talking ouch this is uncomfortable, it was blinding tears in the eyes immediately kind of pain,  I remember begging the therapist not to make me do it anymore. I also remember mom and dad making gummy bears and those tiny Reeses peanut butter cups appear out of thin to get me through those therapy sessions, sometimes it’s the small things. As parents you watch us grow up and you see us as the strong ones.The truth is that we are strong as you made us. No one asks for a child with brain damage or birth defects and there isn’t shame in that, parents just want things to be easier for their children then it was for them and a disability isn’t easy. We are not the children you expected and yet you love us through hell and back every single last time. Whether our families are formed through blood or love our strength begins and ends with you.As long as you have our backs we can take on the world.

Author’s Note: This post isn’t as detailed as I would’ve liked, so feel free to leave any and all questions in comments and I will add more posts with more information.

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5 thoughts on “Day 415: To Cure or Not to Cure, That is the Question

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  1. What I know of CP came from knowing a mother with a son born prematurely. He needed to use a wheelchair and, of his four limbs, only had use of one arm. He was far from intellectually disabled, but ended up living with his mother. When she died suddenly, he found himself homeless because his mother and he were living in senior housing – it is where they ended up because it is so hard in this area to find housing that will accommodate someone who needs to use a wheelchair. I knew his mother, really didn’t know the son all that well. I was humbled by your tribute to the moms and dads.

  2. I’d heard of the term before but I didn’t know what it was exactly. For someone like me, this has been very informative and eye-opening. You mentioned that talking about it is hard and I cannot even imagine what it must be like for you to write this. And I loved the last bit where you addressed parents of kids with CP. It’s very sweet of you. ❤

  3. Thank you for this post.

    My daughter is 18 months old and has cerebral palsy affecting all 4 limbs and tone in her trunk. It seems to be a never ending round of physio, OT, speech and language therapy, etc etc at the moment and there are days where I wish I had a magic wand to take it all away, but that’s not because I don’t love her exactly the way she is, because I do. I just wish I could take away the pain and uncertainty.

    I find it helpful to read blog posts by people with cerebral palsy as I still have a lot to learn and it’s good to hear direct experiences. Thank you for providing this and for your kind words to parents like me.

  4. You will become familair with things you never knew existed, welcome to the ride. The biggest advice I can give you is trust your gut. You are ALWAYS entiteked to a second opinion if sometthing a docter oe therapist doesn’t sound right to you. Hugs to you and your baby girl.

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