day thirty-one/ silence and noise
Have you ever experienced a day that seems profoundly quiet? Compared to the noise in my head, the jags of crying when it is completely inappropriate, the sensation of floating along from one place to the next, the outside world seems relatively quiet and somewhat surreal. I just expect something to explode or fall apart or die in front of me because that would match what this feeling is.
I expect this change because in two weeks so much has changed inside of me. I remember the day I got married, I didn't think things would change much between Peter and I but I woke up the next morning feeling completely different. I thought it was a matter of semantics, the difference between dating someone seriously and being married. It also reminds me of the time I was in "The Twelfth Night" in high school and the director said, "you have to be in love. You know what it is to be in love, don't you?" I nodded my head, convinced I had really experienced love because I thought having a huge crush on someone was love. Turns out I was wrong on a lot of fronts... the way all of this is defined does matter. I guess I finally am at the point where I can accept it.
Ok, well, that is not true. I don't accept a lot of it. I don't accept the fact Henry has a severe intellectual disability. There is so much we discover about him on a daily basis, so much that he knows. He knows his alphabet and that is not something I could say about one of my other children when he was five. Last night I was looking through a number book with him and he pointed to each number and then looked at me and said "un (for one), oo (for two), ee (for three)". When I told his speech therapist about this, she said "I didn't realize you had a French baby!" (to which I laughed very hard). There is so much we are unlocking with the assistance of his iPad- so much he knows and his amazing sense of humor. I don't accept where this is going because it leads down a very specific road.
It is a road that means he will always live with us, always need tremendous supports, and never find an independent life. As much as you don't want your child to grow up, you certainly never want this. This road in the past has lead very different directions. It used to mean that your child was placed in a separate classroom from others (that is what it meant at my school). Before that, it could mean your child was institutionalized because your family could not find the necessary therapies, assistance or more importantly, education. The history of disability is still very hush-hush, but it is a story so many families share. It is a story that often treated like a secret and sadly, still is so. Because of this, I feel blessed to be a mother in 2012 to a child with special needs. The supports are incredible and I can only believe they will get better by the time Henry is 10, 15, 20 and beyond.
This is one of the things that gives me such hope. The fact that I can find necessary services for Henry and educational programs means that so much development is possible. The ability to identify what is taking place means that research is possible. In fact, it is already taking place for Pitt Hopkins syndrome. A possibility of finding a therapeutic is very possible and would be so miraculous. It would change our life tremendously. It would also change the lives of so many others on a dramatic level. It would mean therapeutics for genetic conditions are possible. It could possibly mean treatment for children with autism as many kids with Pitt Hopkins and other genetic conditions exhibit autistic-like symptoms. The world is opening up and this makes me so hopeful for Henry's future.
I try everyday when I am overwhelmed by this noise and sadness and expecting the word will react accordingly to remember that the world has changed. Things have improved for my child and others like him and based on what children with disabilities faced 20 years ago, Henry's story is not known and can't be written. Just like your typically developing child, the future is unpredictable, sometimes scary, unknown and very, very bright.
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| one of my favorite photos of Henry ever |
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