finding a voice

day thirty-three/

As is usual with thinking too much about one thing, I am up later than I should be, pondering what I shouldn't. I've been reading books and support group threads and other sites.  Tonight, as I pulled the blinds to protect my husband and my sons from the morning sun, I was thinking about a family I met very recently with two daughters who might have a diagnosis of Pitt Hopkins.  They are new to the diagnosis and their girls are 21 and 23.  Many years ago, they purchased a former convent to convert into a home for their daughters and other girls like them.   It was a beautiful gesture to make certain their girls have a future that they envision as opposed to a life in an institutionalized setting.

I am girding myself against this reality.

I want to provide a shelter.  Its not just for Henry.   I want to build a shelter for my sons that will give them strength and courage and the right amount of love for a brother who will be different than they expect. I want to build a shelter that will protect my parents and my husband's parents from too much knowledge and too much pain.  I want to build something that I can give to my sister and my brother that says this will never happen to you.  I want a haven for myself and my husband that will give us solace in the years to come.  But most importantly, I want to shelter Henry from this world.  I want to protect him forever from bullying and teasing and names and labels and being outcast and neglected.  I also, above all, want to make sure he is loved and lives in a place that values him.  Perhaps this part is a bit far for me to go today.  It is a statement that I don't feel is completely real.

I took Henry with me to the dentist today.  When the hygenist came out to get me, Henry did his typical "I don't want to go" action in the stroller:  he spread out his arms, shifted his body weight down and planted his feet on the ground.  All I needed to say was, "Henry, mommy is going to the dentist.  You won't be hurt," and he lifted his legs.

I placed Henry in his stroller facing me.  I brought his iPad and thought he would just play his games.  As the hygienist asked me questions about brushing and flossing habits, Henry furrowed his eyebrows and watched me intensely.  I kept reassuring him that I was ok.  The hygienist gave him a toothbrush and for a little while, he occupied himself brushing his teeth.  Then the cleaning began.

Again, Henry furrowed his brows and watched me intensely.  Then he took my hand in his.  Instead of me holding on, he held onto mine.  A few times during the first part of the cleaning, he said, "Mama? Mama?".  As soon as I was able, I would sit up and say, "I'm ok.  I'm not hurt.  Everything is ok" and he would give me a giant smile.  Once I needed to lay down again, I would see him scrunch up his eyebrows and grab my hand.

This continued for an entire hour.  Although he had his iPad in his lap with all of his favorite games and apps, he didn't once turn it on.  He just sat there and held my hand.

I don't know if I ever wrote about his emergency root canal in the dentist's office just a few months ago but it was a very traumatic experience.  The fact he went into the dentist's office with me at all after only a very small fit was incredible to me.  I was amazed by his behavior while I had my teeth cleaned.  The level of compassion in this little child was simply overwhelming.

I've always expressed that he knows far more than he is able to communicate.  But today, I feel like his behavior is far beyond his years.  I don't think my other sons at the age of five would have held my hand for an hour at the dentist. 

I am in a deep sense of awe this evening and not feeling like I want to sleep.  I want to savor this feeling.    I just want to appreciate it for being so exceptional and not think about the fact that he has a specific syndrome. It was so beautiful and he knew that he was helping me.  Like Thomas delivering flowers to all of my friends or Parker singing me lullabies, it is a memory I will always cherish and I am glad to have it.