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.