Not Not Ok

I made the almost three hour drive in two.  Scott and I continued the ride to Boston together in his car. I’d been away at a writing residency in the White Mountains, and we hadn’t seen each other in almost a week.  We chattered catching each other up on what’s happened in the previous several days spent apart. The conversation slowed the closer we got until we sat side by side in silence in the waiting room.  Both of us lost in thought wondering how what the doctor revealed would change things.

We got the official diagnosis.  It wasn’t like we didn’t know or expect what we heard, but hearing the doctor say out loud what you’ve been thinking for so long causes a reaction.  Describing the reaction is difficult.  It wasn’t fear or sadness.  It wasn’t happiness or expectation either.  I expected to feel relief and validation, but that doesn’t accurately describe the thoughts that coursed through my mind while the doctor summarized the results of their 2 ½ hour evaluation.

In some ways it was overwhelming. We received a lot of information and guidelines for standards of care.  We could no longer excuse or avoid what we knew.  It was made clear and official during a 40 minute appointment at Children’s Hospital.  When he confirmed that our Princess has an Autism Spectrum Disorder (ASD) I sucked in my breath and held it.  I looked out the window at the world that continued to move around.  I pushed my breath out hard and remembered all the mistakes I’d made.  Maybe if I refused the H1N1 vaccine while I was pregnant.  Maybe if I’d skipped the flu shot.  Maybe if I’d eaten healthier.  Maybe if I’d nursed for longer.  Maybe. Maybe. Maybe.

I returned to my writing residency after our appointment.  I had about two days left in the “bubble” and was eager to postpone immediately acknowledging the results of Princess’ evaluation. I know that when the residency bubble pops, I’ll be back in the full swing of amending the draft IEP and augmenting the IFSP with Early Intervention.

I’ve shared the diagnosis with friends and family.  People keep asking if I’m ok.  I’m not not ok.  I’m not ok either.  I’m in the gray area of the spectrum and ready to take Princess’ hand to face what comes next knowing that I can handle this and that together we can be successful.