The American Way...

I have such a migraine today... full blow need to lay down and sleep migraine... As I lay here with my little cute side kick... talking my ear off non-stop!!

I reflect and wonder..

Why oh Why

• why do I measure him based on what he doesn't know... when clearly he knows so much  ??
• why do I constantly focus on how far behind he is... rather then how far he has come ?? 
• why do I focus on where we need to work harder... rather then the strengths we need to nourish ?? 
• why do I need to find what others judge to be "the perfect program"  rather then the "right" program for what he needs ??
• why do I need to get every service to try at achieve what is the "normal"... when this 7 year olds life is so far from normal ??

At First...

• All I needed and wanted was quality and quantity..
• Then I needed him to make it to transplant...
• Then I so desperately begged and pleaded for him to survive his life threatening event..

Somewhere, somehow I have completely lost focus.. Always wanting more and more.. Always pushing harder!!  Losing site that life can change in an instant!! and the time I have spent stressing over the unending list of what he "needs" to accomplish will mean absolutely nothing!!

We laid in bed this afternoon for an hour or so and he cracked me up!!  As I laid listening to him I thought... this is the boy who has survived UNBELIEVABLE ODDS,  had NO speech at 14 months, did not crawl or walk but sat and rocked until 18 months, survived NUMEROUS GI surgeries, and NEVER ate by mouth... and here he is today ALIVE, HEALTHY, talking in complete sentences, spelling, beginning to read, running, jumping, eating everything he can get his hands on, and knowing exactly how to order it in a restaurant..  NO, he is NOT perfect but we have come a LONG way!!!

Tomorrow is my meeting with the board of education pray that I can keep this in mind as I try and advocate for what is best for Devin!!! 

PS Thank You Tina!! ;)

Our Meeting


Our meeting went extremely well!!  I believe we have put into place everything Devin needs to make his transition to school a success..  Now the impatient mother must sit and wait for a letter to come in the mail in board of education time for his specific placement... :(