Day 188 – Grayson’s Journey

Dear family and friends,

What a beautiful day to drive to Bakersfield and what an even more beautiful smile greeted us when we arrived.

We thoroughly enjoyed spending the day with Grayson. He was his usual quiet and affectionate self. We dined together on the sunny yet cool outdoor patio at Chipotle. Every couple of bites Grayson would stop eating and listen to us talk or watch the birds scramble for crumbs underneath the tables. He would chuckle or smile at amusing stories and then eat a bite or two if we encouraged him. He looks even thinner than before and as of his last weighing two weeks ago he had lost a couple more pounds.

One of the errands we ran together this afternoon was shopping for a new blood pressure monitor. In one store the monitors were locked in a glass display case. Above the case was a large red button with the words "Press for service". It was very similar to the Staples big red "Easy" button you may have seen in ads. Grayson's eyes lit up, a mischievous grin came across his face, and an extended index finger slowly inched its way directly toward the button. It was as if we were watching a five year old.

After ice cream at the locally famous "Moo Creamery" we spent a long time at a local park. Here we encouraged short dashes to get his heart rate up and lots of time passing, kicking or bouncing a big, blue ball among the three of us. We are trying to work on his sense of body timing and reaction time.

Later in the afternoon we spent some time listening to more recorded chapters of The Hobbit and reading some of the cards and letters from family and friends. Tonight he is attending a production of the classic Shakespearean comedy, Merry Wives of Windsor at Cal State Bakersfield.

This day so perfectly describes Grayson - curious and happy, childlike yet enjoying literature and live theatre. What I miss most is his lively, intelligent conversation. It takes more effort to communicate with him now – more questions, learning how to read the facial expressions and shoulder shrugs, guessing his needs and encouraging him to verbalize his desires, thoughts, and choices.

Grayson is relearning much of what we all take for granted in our lives. Brant and I are learning how to slow down our own lives and walk in slower step with Grayson. I think we are all making good progress.

Grace and peace,

Regina