Day 91 – Grayson’s Condition

Dear family and friends,

This is a day to remember the command "Love one another" and we did just that.

We started the day at the same Lutheran church as last Sunday and were warmly welcomed by name as we entered the front door and made our way up the aisle. We were surprised how many people remembered Grayson's name until we sat and perused the bulletin. There on the page of special prayer reminders was a one paragraph summary of Grayson's condition, thankfulness to God for Grayson exceeding initial expectations, and a prayer request supporting us on our healing journey. It is such a blessing to have a familiar home away from home on Sunday mornings.

Even though Grayson was very low energy and non-verbal today, he again found his voice and joined in singing each hymn and reciting the Lord's Prayer. We are so grateful that he finds safety and motivation in the familiar environment of music and prayer.

As a special Valentine's Day treat we had a delightful lunch at a sushi restaurant. The situation was close to perfect as we were the only customers and it was not over-stimulating. The waitress was patient and understanding and she filled Grayson's glass only half full (perfect for his shaky hands).

One of the significant challenges with Grayson is impulsivity and the lack of any awareness of consequence. This causes safety issues because he will repeatedly and rapidly take large bites of food or stuff his mouth to overflow without chewing or swallowing in between. Sushi turned out the perfect lunch. Not only is he a big fan of sushi but we were able to order one roll at a time and share it piece by piece. No overeating and no battle to control his pacing.

After lunch we walked for about an hour around his neighborhood enjoying the spectacular weather. We observed birds, dogs, and trees (lemon, grapefruit, and orange) and sang songs or hummed as we walked. The hour long walk was important because we are trying to increase his stamina and slowly increase his cardiac conditioning. The rest of the day was spent in the wonderful minutia of daily life that we no longer take for granted.

Today we celebrated a loving, peaceful day together. Today we celebrated life - song by song, bite by bite and step by step.

Grace and peace to each of you this Valentine's Day.

Regina