The Race is Over?

The race is over.  He made it to the finish line. All the training, blogging, planning, talking came down to a 4+ hour run up a mountain to the summit. It was a beautiful day, no snow storms to turn the runners back this year. No freezing winds to sit in for those of us waiting at the top. It seems ironic that we come home to begin another school year and the planning and talking shifts to the coordination of schedules with work and therapy and school activities. The truth is the race is never over.  For parents of kids with special needs, the race against the developmental clock continues every day and it seems the course and the training changes without warning. After yet another meeting with an “expert” to go over how much their program helped Katie and how much more they could accomplish with more time (and money) I told Todd in frustration that we need to sell our house to live in a hyperbaric chamber with our therapeutic listening music and only come out to tend to our organic garden and to spin around.  It is an ongoing struggle to balance the programs available to help our children with the available financial resources and still plan for the future.  It takes courage to have hope, but it also takes hope to have the courage to demand better for our children who need our voices to speak for them.  The rate of autism has exploded in this country and yet it still feels like an incredible fight to get therapy visits approved and biomedical treatment options covered. Our public educational system cannot meet the needs of our kids and yet the system will not change unless we demand more.  The race is not over. We don’t even know where the finish line is.

Sometimes I ask to seek a closer look

Skip to the final chapter of the book

Then maybe steer us clear of some of the pain it took

To get us where we are this far

But the question drowns in its futility

And even I have got to laugh at me

No one gets to miss the storm of what will be

Just holding on for the ride

Indigo Girls, “The Wood Song”

-Beth