So what?

Timothy has spent his weekend on the computer.  I turn it off and try to distract him and just when I think I’m successful I hear windows8 chime in the background.  Its all he wants to do.  You Tube videos.  Sometimes Starfall (its a school program online).  So yeah, I let him.  He flaps.  ALOT.  I don’t even notice it anymore.  You know that old kitchen scale?  Its been leaning on the awesome side way heavier than the crummy one.

IBI starts tomorrow.  I”m cautiously optimistic.  Throw in a little scared as hell too.  What does this mean?  I’m not sure yet.  I guess “they” (the treatment team) will decide how good of a candidate Timothy is within the first six months.  Then comes the scary part.  IF they deem him inappropriate.  Then what?  Is he beyond help?  Can’t be fixed?  Nah.  He is what he is what he is…….and so on.  Whatever he is, I will love him.  If I change his diapers for the next twenty years(hope not!) I will love him. 

“What kind of life will he have?” I was asked once by someone.  At the time, I had no answers.  I excused myself to the bathroom and sat alone in anguish.  Now is a slightly different story.  I still have no answers, except the difference is that I have hope.  Hope gives me fuel to keep going day after day.  Tiny success takes us a step forward and the same day we can go back five.

I want everyone reading to know that I am not writing these journals for your sympathy.  That’s not it at all.  I’m documenting our story.  I want people on the verge of giving up to sit down and read and know that there is more.  That hey, someone else is going through the exact same crap I am.  That throughout the darkness of diagnosis there can be joy.  You just have to find it.  I promise you, its there.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s