Congenital Bilateral Perisylvian Syndrome

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A Letter to Max

Dear Max,

Tonight, I sit alone in a hotel room in Boulder  thinking about you, your brother, and your dad. And I miss you all more than ever!

I made a decision two years ago to come to the city and make more money so that I could help better support our family.  I wanted to be able to give our family more – things like a house, college tuition for you and your brother, a retirement plan, etc.  But I’m realizing more and more that, that probably wasn’t the best decision I’ve made.

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Sometimes I Feel Like I Don’t Belong

Lone Daisy

Sometimes I feel like I don’t belong.  I worry about my looks, what I’m wearing, my teeth, my hair… the list goes on and on.  The point is that I have this battle with myself about not fitting in; not that I don’t, I have plenty of friends, but I still worry about being different.

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Hi, I’m 20 and Have BPP

Stacked Rocks Cairn

A couple of weeks ago I had a 20-year-old gentleman friend me on Facebook.  It was right after I created the new Facebook group page for CBPS, and had one of the members post two other Facebook groups that were Polymicrogyria related.  I friended those groups and posted my short bio of why I was joining, and then came this gentleman’s friend request.

I accepted the request, and shortly after, received an instant message (IM) from him: “Hi, I’m 20 and have BPP.”  I was at a birthday happy hour at the time, so I wasn’t in the mood to IM on Facebook… that was until I saw his message.  I told him that I had never met anyone over the age of 13 with BPP (the other name for CBPS), and was filled with questions for him.  He was nice enough to answer my questions as I sent him post after post.

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Max Has Failed His Hearing Test… Again

School Hearing ScreeningMax has had numerous hearing test throughout the years.  The first one was after he was diagnosed with Cerebral Palsy at 18 months old, but he passed that one with flying colors.  And he always seemed to understand us just fine; so I never questioned his hearing.

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When I Hear Myself Talk, I Understand What I’m Saying

I Understand

I’ve told Max about this blog a few times, and that I write about him and his condition to help educate other parents whose children have CBPS.  I also let him know that when he’s ready, he can write on this blog as well, if he’d like.  He asked me what he should write about.

I said, “Anything buddy, what it feels like to have CBPS, how school is for you, how it’s like to order food at a restaurant, anything that comes to mind!”  He laughed and said, “I just don’t know what I have to tell people about yet.”

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