The Future?

As I sit here holding my little boy the horrifying thought that seems to continually return and haunt me is: "what about his future?"  Is there a future?  Better yet is there a good future in store for him?  When I read the prognosis for kids with Infantile Spasms it is never good.  In fact it is generally down right terrible.  This problem of Infantile Spasms only seems to create more problems.
Even if you DO stop the spasms and the crazy brain waves, which is crucial, your child still has the chance of developing even worse seizure types by the time they are 1-2 years old.  Anywhere from 6%-33% DIE by the age of 3.  If they don't die then at least 30% of them are autistic or 70%-90% of them are intellectually and developmentally delayed.  Is it any wonder why I fear the future for him?  The odds don't seem to be on his side.
Several times at my job (hopefully this isn't a HIPPA violation) I see patients who are mentally delayed.  It breaks my heart.  They lay there in their beds and stare blankly at the ceiling, often times restrained because they try to pull out the essential equipment that they need to survive.  They are alone and have no family. They are taken care of by the state.  I can't fathom that one day that might be my little boy.  It happens though!
There is a theory called the Socieoemotional Selective Theory (SST).  The theory is basically based on people learning to use their time more wisely.  Living for today instead of the future or the past.  It is certainly something I could learn from.  It is easier to imagine a horrible future for my little boy then to live day by day only seeing a question mark in his future.

              

The future is unknown.  What I have learned through all of the studies, our neurologists, and doctors is that they honestly have NO idea what to do or what the future holds.  They are as lost and confused as we are.  Your kid could turn out severely mentally damaged, just a little bit, or not at all.  It is a gamble.  Maybe I should take the SST more seriously.  

I do need to live more for today.  Which is difficult because I am a die hard pessimist.  Instead of worrying about what he may not be able to do I could remember all the things that he CAN do.  Like smiling.  He has always been a smiler.  Or that he is coordinated enough now to suck his thumb, once even with his left hand!  That my friends is a miracle.