Utah Family Voices

Utah Family Voices

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Cerebral Palsy: A Poem
Written by Wendi Jager and Rylie Jager

Born on time,
First boy to come.
Not quite enough,

Cerebral Palsy,
Is what they say.
Will be what you live with,
Every day.

Low muscle tone,
Floppy and slow.
Lots of therapy,
As you grow.

So much learning,
To be done.
But not by you,
We are the ones.

A Letter About CP from Christine

CP from what I always understood is sort of a “umbrella” term.   When you told you child may have CP, you may think of someone you have known that has CP, I thought of the girl who used to star on “Facts of Life” (WOW, I’m dating myself!).  That may be true and that may not be true.  Cerebral Palsy can be anything from a mild learning disability or maybe a behavior problem to the other end of the spectrum, a person that is confined to a wheelchair and is totally supported by a caregiver, or anything in between.  Hence the term umbrella, most kids that have delays in their development may get the diagnosis CP, whether it be moderate or sever, they would all fit under the same CP umbrella.  I feel my daughter fits somewhere in between.

Let me tell you a little bit about her.  She is in a wheelchair, but also is able to walk in her specialized walker.  She is able to communicate to me though sign Language and say a few basic words, like mom and dad.  The one great piece of advice I received in the NICU was not to treat her like she was “fragile” or “special” but that she is my child and to treat her just like any other person would want to be treated.  It’s tough, don’t get me wrong, it takes a lot to deal with a special needs child on top of everything else that we feel like we need to accomplish.  I have had to make some sacrifices in my life to do things for my daughter, but her smile makes my life and everything I have to do worth it!