Day 394 – Grayson’s Journey

Dear family and friends

Tonight was not unlike many other nights. Grayson arrived home from the clinic. We did some chores together, played some games and waited for Regina to arrive with a) Lauren and b) groceries. We had a great dinner experiment (chicken with kalamata olives, marinated artichokes and tomatoes) made up as we went along. (It was a success!)

After watching an old Christmas movie (Jack Frost), I gave Grayson his meds – in applesauce as always. After we finished, he stood up. I asked him where he was going. He said, "To hug you." He put his arms around me and said, "I love you Dad."

I was touched to tears.

Then I completely lost all control. Waves of emotion rolled over me like an ocean as I relived the grief of the loss of my son's capacity to live independently, to read voraciously, to speak so eloquently, to be so informed, all while being so caring. I was consumed for a long time before letting go. Then we were back to normal – taking care of our loving and wonderful 25 year-old man-child.

We helped him brush his teeth and get ready for bed before tucking him in for the night.

Pax!

Brant

Day 393 – Grayson’s Journey

Dear family and friends

Tonight we put the ornaments on the tree! Austin and Xixi came by and we added all of our favorite ornaments. Every year we add at least one new ornament to our collection. As we get older, we find that our tree gets more crowded. It's a wonderful journal of our life and we are quick to bore people with stories of the history of each ornament.

Grayson participated tonight due in part to his dear friend Xixi keeping him in the game. He hung ornaments along with the rest of us. He was excited and enjoyed himself this evening. He is like a little child excited about Christmas and all of the promise that it brings.

Advent is a time of waiting, after all.

Pax!

Brant

Day 392 – Grayson’s Journey

Dear family and friends

Today was a wonderful church day. Gaudete Sunday, the third Sunday in Advent, is a day to rejoice, and we did so at church!

Regina, Lauren and I each had different reasons to arrive at church an hour before the 11:00 AM service. In addition to the regular Sunday happenings, Regina was the AV tech this week, Lauren was playing handbells and I was rehearsing quartet music for the concert this evening. After the service we had lunch and Lauren returned to church for more rehearsal. I arrived at 4:00 for my turn, and Regina and Grayson arrived at 5:00 for the concert. All of the choirs (3 children choirs and the adult choir) as well as the handbell choirs (2 children choirs, the high school group, and the adult choir), our organist, a vocal quartet and some soloists made up the ensemble. (I was one of the soloists and a member of the vocal quartet.)

It was a lovely concert!

Grayson probably spent more time in a church pew today than he was comfortable with, but he was a champ. Keeping in mind that he is not unlike a five year-old, 4+ hours in a pew is a long time! He did a great job today, and he followed much of the program tonight.

We returned home to find another surprise – Austin over for a visit! Xixi was tutoring someone in math locally, so she dropped Austin off for a visit before meeting her pupil. She joined the rest of us for dinner – what a treat!

So today was a day for us all to rejoice together – Gaudete!

Pax!

Brant

Day 391 – Grayson’s Journey

Dear family and friends

Today we decorated for Christmas! After last year's holiday season spent in the hospital, it was such fun to put the house on its Holiday best!

Austin came by and joined Lauren, Regina and I to bring the mound of boxes of up to the main floor for unpacking and deployment. After the boxes were up, Austin and I put the lights on the tree – 615 lights to be precise! Mom hung the garland then Austin put the angel on top. We are now ready to hang the ornaments, but that will be a job for another day – likely Monday because Lauren and I are performing in the Christmas Concert at church tomorrow evening. 'Tis the season to be busy!

Grayson followed us around and watched as we put delicate things out. He was also a bit withdrawn today. I suspect that was because of the change to his environment. Change to the familiar is not easy for Grayson any longer. Adjustment takes time – even for the beautiful and familiar decorations that we have always put around the house.

After dinner, Grayson became a bit more comfortable because we watched the Christmas move Scrooge for the second time this season. A delightful film with wonderful music, it is a family favorite.

What a wonderful day! All of the kids home to decorate for Christmas – I don't think that I could ever get a better Christmas present!

Pax!

Brant

Day 390 – Grayson’s Journey

Dear family and friends

Tonight was a guy night. Regina and Lauren went shopping and Grayson and I were left to our own devices. After doing some chores around the house, we went out for sushi – Grayson's choice! The two of us had a nice time at the sushi bar and having our fill of our favorite rolls.

We returned home and watched half of Fred Claus, and Grayson laughed like crazy! I'm looking forward to watching the other half so we can find out how the story ends! We were on the couch watching the movie when Regina arrived home with Lauren.

While Grayson's speech appears to be getting worse over time, other parts are getting better. Tonight while doing a household task, I asked Grayson to dispose of the trash. He picked up the pieces and took them to the trash can in the kitchen with no assistance or cues. I would not have done that in mid-September when he came home.

Step by step!

Pax!

Brant

Day 389 – Grayson’s Journey

Dear family and friends

I arrived home this evening from a business trip to Arizona. Grayson greeted me with a big hug as I came in the door. (Regina did also!)

Since I left on Monday, it seems as if a little something may have awakened in Grayson's brain. He initiated a multi-step task and took some independent action. I was shocked (and pleased!) He also was more focused on doing some tasks, even if they were the mundane things like putting on pajamas. It is way too early to draw any conclusions, but there are some indications that a new "pathway" may have opened up and the results are promising!

Not a bad homecoming surprise!

Pax!

Brant

Day 388 – Grayson’s Journey

Dear family and friends,

This week Grayson walked five flights of stairs carrying 11 pounds of weight in a bucket (the other hand on the hand rail) and then walked five flights with 20 pounds of weight. He walked on flat ground with 20 – 30 pounds and then walked backwards carrying 20 pounds. He pushed a cart loaded with weights, walked 100 steps on a NuStep machine, played Wii Fit games and helped decorate the office Christmas tree.

The occupational therapist worked with Grayson on coin identification and safety (what-if scenarios). She also focused on personal hygiene routines, shoe tying, fine motor skills and identifying multiple sensory stimuli with Grayson's eyes closed.

Another therapist used memory tasks, auditory comprehension, naming categories (e.g. words that begin with the letter "p"), three-step direction following, and word fluency exercises.

How fortunate we are to have access to such varied therapies and creative therapists. Those of you who have been through a rehab and recuperation program know exactly what I mean. In the meantime we are trying to learn as much as we can so that we can recreate this on our own when insurance no longer covers the therapies.

I pray that day is later rather than sooner.

Grace and peace,

Regina