Monday, March 11, 2013

Cerebral Palsy Awareness

Here are some things you might not know about Cerebral Palsy:

  • Cerebral means "relating to the brain" and Palsy means " muscle weakness"
  • Cerebral palsy is a brain injury.  It is not contagious and it is not progressive - i.e., the injury is what it is and won't get worse over time.
  • Cerebral palsy can span the spectrum of slight weakness in one hand to being unable to voluntarily move most of your body.
  • Cerebral palsy is usually the result of an injury before or at birth.
How Cerebral Palsy effects our everyday life:

  • CP is expensive.  It requires lots of therapy and specialized equipment.  Couple that with the fact that it's very hard to have both of us working full-time and still ensure Emma is getting all the support she needs makes us get "creative" in our finances.
  • Having CP requires countless hours on the phone with insurance companies to get therapies and specialized equipment paid for.  This is a thankless job.  And it seems never ending.  It can be exhausting and insurance companies seem to want to make the process exhausting so you will give up and pay for the items out of pocket but I'm not a quitter!  I am, however, thankful for a speakerphone so I can do other things while on a perpetual hold loop.
  • We think about places before we visit.  
    • For friends and family:  Does so and so's house have a lot of steps to get in?  Is it big enough to bring in Emma's chair or should we plan something else for her while there?  Would it be better to meet out somewhere rather than at a house?  
    • For pubic places:  Is there a wheelchair entrance?  An elevator?  Will it be too crowded to roll through the people?  We pre-plan our excursions when we are going to unfamiliar places.  
    • We also have memberships to easily accessible places like museums and zoos and use them often.  Seriously, I know of few 7 and 5 year olds that have been to the local museums and zoo so many times that they ask do they have to go there again????!!!!  Mine do.  One day they will appreciate all the culture they are soaking in at such a young age.
  • It gets easier and harder over time.  Easier because we are better at knowing what we need and ask for it.  We also have friendships with others that are living a similar life and that is priceless.  Harder because Emma is getting bigger every day and that makes it a bit harder physically.  
  • Making adjustments to everything are just part of our everyday.  It takes time, but it's so worth it. 
  • Some people say "I just don't know how you do it."  That gets old.  I hate that.  I usually hear "thank goodness it's not me who has to do it."  I would rather people say "I love that you are doing x, y,z.  Can you tell me how I can help with it?"  Usually the only people who say this are others who are living a life similar to ours.  
  • I have to ask for help quite often.  I hate asking for help.  I'm getting better at it, though.  But, if I don't ask and you see me struggling....please offer some help.  It will make my day!
Stay tuned for more CP Awareness through the month of March.

3 Comments from readers:

Unknown said...

Ha! I can relate! OK! What i am about to tell you is so funny and sad all at the same time! LOL Tracy is about 35 pounds now and her being the youngest of my four children, I am 42 years old (not exactly a spring chicken). Well, I pulled my rotator cuff trying to lift Tracy, so after that started getting better i thought that i could do things to build up my muscles so i could lift her without injury . Well, I decided to trim the hedges with manual clippers for the last couple of weekends. It was kind of nice actually because my mom watched the kids for me and it was the first time in a while that i had time alone (since i homeschool ALL of them). Well, yesterday I went to bring my arms together and had a sharp, hot burning pain right in the middle of my chest! I knew it was not a heart attack because i just had a thorough exam and my heart is is great shape (good thing i had that exam or i would have been in the ER thinking the worst). I pulled my pectoral muscle and had to hold my arms to the side for the rest of the day! I was walking around like an OOMPA LOOMPA, or a penguin the rest of the day! I am such a duffas! LOL! I guess i will have to build up more slowly over time. Take Care---literally!

Kristina said...

Oh, no, Susan! What terrible injuries right after the other! Emma is about 38 lbs. so I can relate. She is lean and super long - she has a supermodel figure!

I hope that's the end of your injuries for a while and you are feeling better now. I do worry about pulling things so I've been doing a muscle workout routine at the gym that the trainer gave me to strengthen certain muscle groups. Fingers crossed it will work - but the truth is my back hurts pretty much every night :-(

Meera said...

I am a mom of a child with CP too. I can totally relate to all that you have said! My daughter is 6 years old and she is quite long and exactly as u said -a super model !