Cerebral Palsy Awareness Month through his eyes

As Cerebral Palsy awareness month grew near this year, it was something I thought about often.

As an adoptive parent and specialized foster parent, I have cared for a number of children who live with Cerebral Palsy to all different degrees.

For some of them, it is a slight condition that barely affects their daily living.

For others, it is a much stronger force in their lives.

As I pondered what I could share for Cerebral Palsy awareness month as a mother and caregiver, I kept coming back to this idea that if I truly want to grow awareness in a new capacity.

I must find a way to place the awareness megaphone in front of those who are more aware than any: Those who have been diagnosed with Cerebral Palsy.

I presented to idea to my eight-year old son who has Cerebral Palsy and he was thrilled.

While he lives with a long list of medical conditions, Cerebral Palsy is one of his diagnoses and something we speak of often.

He—more than anyone else I know—can give us valuable insight into what it means to live with Cerebral Palsy.

Using his eye-gaze operated communication device, he and I came up with and talked through a number of questions that he answered beautifully and thoughtfully.

Some of his answers surprised me. Some of them didn’t.

All of them were fully, completely his and worthy of being listened to. The bold words in the writing below were spoken by my son in response to my questions and prompts.

I am: funny

I am: Important

I am: Smart, and (his name)

And I also have Cerebral Palsy.

Cerebral Palsy makes me feel: hurt, lazy, alone, trapped

Cerebral Palsy cannot take: My voice, jokes, God—talk to

Takes friends

I wish people were aware that Cerebral Palsy: is bossy, join (I want to be included), pain, my body not my mind

I don’t like it when people: Baby (talk to me), rude, (comment on the) Noises I make, ignore me

People say you are brave a lot. Do you like that? Do you think you are brave?

Yes. Yes. Yes. Yes.

Do you think Cerebral Palsy is part of what makes you who you are?

Yes.

My son is made up of a million wonderful, unique, incredible aspects.

He has Cerebral Palsy. He is so much more than only Cerebral Palsy.

He also knows and wants others to know that his Cerebral Palsy—as well as his other diagnoses—shouldn’t be ignored, overlooked, or avoided, as they are huge, important parts of him just like his favorite movie or his sense of humor.

He feels many things about the conditions he lives with.

He also knows they are just one piece of the incredible human being he is.

Thank you, sweet son, for writing this post with me.