finding a voice

day thirty-two (and seemingly a very long way from just a week ago)

I would like to have a very open discussion about this.  Receiving a diagnosis was heartbreaking.  I cried for several days straight. Pete spent many days crying as well, but he needs to go to work.   I didn't think there was any light.

I joined the support group for Pitt Hopkins.  I saw others were fundraising and knew there were people in my family and my husband's family who were very capable of doing just this.  I signed up to do fundraising.  I sent a letter, my parents sent a letter, I started a facebook group, I created a webpage for Henry.

A little over a week ago, I was miserable.  Earlier this week everything changed.  With donations coming in and people sending us notes, things started changing not just gradually but immediately.  I felt more happiness than I've felt in over four years.

Some things just melted away with the definition of our experience.  The guilt went away.  I've blamed myself this entire time.  I think as a mother you always tell yourself there is more you can do even if there isn't.  The heavy load of not knowing too went away.  There is something about being in the world and everyone telling you there is something wrong with your child.  You know it too but they want a word and you don't have it.  Now we have the necessary words as heavy as they are.

The most important part that has made me joyously happy this week and lifted me above it all is there is really, truly hope.  There are research trials.  There is interest in finding treatment.  The fact I can put my energy towards a definite cause has lightened this load considerably.  Don't get me wrong... I am still very worried for Henry's future and the fact we seem to be regressing with potty training and behavior and other parts of his life.  The fact he is always the most delayed in every classroom setting and he clearly has so much going on behind the scenes, the fact I have read about other children with his condition as teenagers and adults, the fact I am not really ready for any of it...

I want to fight.  I am raising my fists against this diagnosis.  Part of the blessing of not knowing what Henry had for so long is the fact we always believed he would walk and talk.  We believed he was and is capable and still do.  Although clinical research will tell us differently, I don't believe any of it and neither does Henry.  We will still raise him as if he will be capable of being independent.