Sick and tired of suffering

I will never know what changes from one day to the next.  All I know is I go to bed with a smile on my face after a good day with Ty.  Every single time, I think to myself, "Today was such a great day.  Every day should be like this for Ty.  I hope this is the first day of his continuous improvement.  Maybe every day will get better and better from this day forward."  Then I wake up to screams and agony in the middle of the night, or in the morning, and my head spins because I don't know why.  Why one day he eats like a champ and the next day has less than 1/4 cup of juice all day.  Why one day he doesn't wince in pain at all, and the next day requires morphine just to get him comfortable.  The good days and bad days just blend together now, and it's become part of our everyday life.  We never know what kind of day it's gonna be.

We are sick and tired of it.  Lou and I are getting more and more upset during the bad days because we just can't watch Ty suffer through these headaches anymore.  This started two years ago.  Ty has been in suffering for TWO YEARS!  We are helpless when he is in pain and it makes us crazy.  We spend so much time talking about why.  About what we want for Ty.  About what  physical limitations we are willing to accept for Ty as long as he is happy, versus what our greatest fears are.  In the end we both agree that as long as Ty is happy, as long as he still smiles and there is an end to his pain sometime in the future, then who cares what it is doing to us now.  Everything will be okay if Ty is okay. 

I was so deflated this morning because I was sad for Ty, and then I saw this picture from over the weekend and it turned my whole mood around.  What am I going to do with these two goofballs?  I couldn't be luckier.  I couldn't be more in love.  I have to thank Ty's beautiful speech therapist at Blythedale for the laugh this morning - she gave him these glasses in a gift.  We will be switchng hs therapies to at-home services by the end of the week and she will be missed.  It is a welcome transition because our schedule won't be so incredibly brutal, but we will miss all of Ty's therapists and teachers at Blythedale. 

Fingers crossed for a good day today.  Thanks to all of you that have joined Ty's team in the upcoming 5K, and for all of the generous donations.  I will continue to post that information every few days and appreciate everything you're doing for Ty and kids like him.