The other side of hope

It’s not like there was an “aha” moment when I knew. It was a gradual realization “normal” wasn’t in cards us; the realization this wasn’t a temporary situation. We would not be one of those families whose child had “recovered.”

Maybe the realization came from finally having time to think. The early years were a complete blur: A whirlwind of doctors, experts, and therapists. It was an immediate immersion into a foreign culture with a new language and new concepts to learn.

A time when everyone had an answer; everyone had a program, there were endless anecdotal stories of success. Six weeks of this therapy or maybe that. Have you tried a sensory diet? Auditory training? Restricting gluten? Neurofeedback? Interactive metronome? Vitamin B? There was a seemingly endless list of interventions. 

For a thousand or two, we will "fix" your child. Hope was on sale and I was buying. Some helped a little, most not at all. At the end of each therapy, improvement was reported. Like the boy in the Emperor’s New Clothes, I didn’t see it. I didn’t say that out loud, though. I wanted to be wrong. I didn’t want to admit my hope was showing signs of tarnish.

Dozens of therapies later, I watched countless younger children acquire skills and pass us by. They did with ease what my child could not. I continued to hear stories of kids who bridged the gap and wondered, why not Sam? Were we doing something wrong? Kids develop at different times, I told myself. We’ll blend by kindergarten. Well maybe by first grade… or will it be second? It will happen.

Or will it?  

Now in his 17th year, Sam is beginning the transition process into adulthood. That includes guardianship at 18.  This legal act effectively proclaims Sam is incapable of managing his life alone; the unspoken words that this is forever.  

With that legal document, I will officially transfer to the other side of hope. And I ask myself now what? What happens when hope is gone?

I will remember to breathe. Cry a little. Regroup. Rebuild expectations. Search again for a place to fit in. Maybe redefine the word “normal.” Take another deep breath and move on. Find the joy in each moment and stretch it to a lifetime. Look for balance and hold tightly to my sense humor. Find a new star to reach. I will look into Sam’s eyes and know this is the same boy I have always loved and will always love. The boy who has made me and countless others smile.

I will build new hope as I close the door on one dream and open the door to another.

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