A Relationship with Cerebral Palsy

In light of March being Cerebral Palsy Awareness Month I wanted to give you glimpse into some of the challenges and frustrations we face living with and loving someone who has CP.

  • Getting Gavin dressed is like trying to put a coat on an octopus. He doesn’t always fight it, but when he gets upset or excited his muscles contract (tone) making it nearly impossible to get him to bend an arm or leg.
  • Going out to dinner is rarely a spontaneous event. I need to review menus to determine if there’s something on there he can eat (not from a taste perspective but he eats stage 3 consistency foods) and if not bring something I know he can/will eat.
  • Trying to make his 6 year old sister and 4 year old twin brother understand why he gets (in their opinion) all these “cool” devices, when they don’t understand that he actually needs them to function – not to play.
  • Simultaneously making his siblings feel special as often as we can because he does need so much of our time and attention.
  • Going on vacation – significant amounts of time and energy go into planning a day trip – a vacation? I don’t think I’m strong enough for that just yet.
  • Watching him work so hard to do the smallest task that comes so easy to everyone in his world.
  • Specialists/doctors/therapists defining him by his diagnosis and not realizing he is soooo much more than that – and can do more than his diagnosis suggests.
  • Not always being able to understand what he wants/needs.
  • SLEEEP (or lack thereof). Kids with CP typically have sleep disorders. Their muscles spasm even while sleeping and for a lot of kids they can’t change sleeping positions. While we have Gavin on sleep meds to help, it doesn’t fully fix the issue.

I know it sounds hard to believe but there are also a lot of good things that happen or that we get to do and that aren’t impacted by the fact that Gavin has CP.

  • Being graced with a smile and laugh so bright that you’d think the sun was shining only for you.
  • Playing in water (pool or bath tub!). The only time Gavin doesn’t have to fight his body is in the water and the pure joy and excitement that brings him.
  • Tickle time and dance parties.
  • The special bond he has with his siblings.
  • Watching him experience something we were told he never would and showing up those “by the book diagnosis” people.
  • The interesting people we get to meet on a fairly regular basis.
  • Lots of service dog love anywhere we go.
  • Experiencing life outside the “norm”.

These lists are only a small look into what we deal with on a near daily basis. Some days are much better and some days are much worse – just like any family.

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