Fixing His Own Food

Saturday 15 December 2001
     Brian fixed his own breakfast: got the dishes, cereal and milk, and fixed it all himself. He also cleaned up afterwards. This was the first time he had "prepared" a meal!
     Brian helped walk the dogs (Laurie, Shy Moon, Josie).

Laurie was the Border Collie/Australian Shepherd mix who technically belonged to Jesse. Shy Moon was a sweet black Lab "inherited" from Eagle Mill Farm ("Geppetto's Farm"). Josie was Kellie's part-Chow mix.

Page Three, with family information

Click on the image to see it all

A New Therapy

Friday 14 December 2001
     Marshall and Kellie arranged for Brian to have cranial-sacral therapy sessions with Dr. Patrick Westlake. He had his first session today, and he fell asleep. The purpose is to "relax" his brain so he can focus more easily. He is normally very hyper.
    Brian went with Marshall to get their Christmas tree.
    Chris Newton and Emily Robbins visited.

The therapy was controversial and was not discussed with anyone beforehand. No one knows if it did any good, but Brian enjoyed it, and he obviously relaxed. 

Page Two of the information pages

Click on the image to see the whole thing

Brian's First Day Home

Thursday 13 December 2001
Brian was very happy to be home; he was especially glad to see Conan, his cat, and the other animals. (Dogs, chickens, horses)
His cousin Brittany came to visit.
Mom called in the evening, as she did every evening (or day). Dave also talked to Brian when Mom called, maintaining the daily contact established since October 8th.
These daily calls were "check-ins" as well as "good night" calls.
There was no bedtime story reading while Brian was at Marshall and Kellie's, because Brian didn't want Marshall reading to him, only Mom.

First page of Brian's information pages from his Memory Book/Planner

Click on the image to see the whole thing

The Day of Freedom

Wednesday 12 December 2001
(NOTES)
BRIAN'S LAST DAY : HIS DAY OF FREEDOM
Brian had therapies in the morning: Marcy for OT, Amy for PT, and Julie for Speech. 
After packing and paperwork and many farewells, Brian got to leave in the early afternoon.
We walked out the door together, carefully crossing the street, and Brian got into Kellie's van to go home to Marshall and Kellie's. He was very excited about going home. Thin, with "long" curly reddish hair and an awkward gait, he was "alive, well and awake" - and walking and talking and out of the hospital.

The following pages are from notes on calendars and other sources. When Brian was at Marshall and Kellie's, they wrote notes on his Planner calendar. I did the same when he was with us. These notes extend through the end of December.

As I was typing this brief entry, the memory, the tears, were right here with me. Relief and pain and sadness and joy. I feel them all.

The December Planner Calendar. Some of the notes were written by Brian. Click on it to enlarge to read the notes better.

The Last Hospital Day

Tuesday 11 December 2001
(NOTES)
Mom and Dave were with Brian as usual. Brian and Mom got to walk outside and work on watching for cars, crossing streets carefully, and orienteering.
Brian and Amy went downstairs together, using directions Brian wrote. He needed fewer cues this time!
Because Brian will be going home first with Marshall and Kellie, Joyce (OT) met with them to discuss what Brian's needs will be, and the safety of their home.
It has been agreed that Brian will spend ten days at a time at each home, at first. 
Mom read Harry Potter, as usual.
Brain can stand alone, can be alone in his room now! (He was never allowed to be alone, for safety reasons)
He leaves tomorrow!

It was hard to let him go to Marshall and Kellie's first, after being with him every day, participating so intensely in his recovery. We adjusted the schedule as time went on. 

A New SLP

Monday 10 December 2001
(NOTES)
Brian's weight today is 154.44 pounds. He is still very thin compared with his weight prior to the event. His face is particularly gaunt still, bony.
Mom and Dave spent the day at the hospital. Mom read Harry Potter to Brian during an afternoon rest time at 1 pm. Brian was tired out after his busy weekend.
During PT in the afternoon, Brian visited the Outpatient Therapy offices, and met Larissa Sweeney, his new Speech and Language therapist. He went down the stairs instead of the elevator; stairs present a challenge for depth perception and balance.
Marshall visited. 
Mom read at night.

Larissa remained his SLP until he graduated from services. She was a tiny young woman with a big heart and infinite patience. She was wonderful with Brian and helped him as much as she possibly could. Thank you, Larissa!!

18th Birthday

Sunday 9 December 2001

BRIAN'S 18TH BIRTHDAY!!!
Dave and Mom did not visit in the morning. Brian stayed at Marshall and Kellie's for the same amount of time as he did with us. he got a digital watch, a beautiful long-sleeved tie-dye shirt (which disappeared at the hospital) and ANOTHER carrot cake. Some of his friends stopped by, too. There were no notes kept in his Memory Book, unfortunately. In the evening, Mom and Dave came to the hospital, to see Brian on his birthday, see how the day went, and to read him his bedtime story book.
Two more days! (until he was released from the hospital)

Birthday Home Visit

Saturday 8 December 2001
NOTES: TWO MONTHS SINCE EVENT
Brian had his usual morning today, but without Mom and Dave because they were coming to pick him up at 1 pm for his Birthday Home Visit. He did laundry and exercises.
At 1 pm, Mom and Dave picked Brian up. All the way in the truck, he wanted the window open so he could yell out, "It's my first day out of the hospital in two months!!" He was bouncy, excited, exuberantly happy to be OUT.
Mom and Dave have a new place to live, 868 A Street, in Ashland. It's a one-bedroom suite at a place called Clarity Cottage, owned by the parents of Brian's friend Chris Newton. It's around the back, on the alley, one house north of 8th Street and across from Railroad Park.
Aunt Mary and Uncle Terry were there, with balloons, a pin for Brian that lights up, plates, cups, and gifts. Zack from the Green Man (coffeehouse where Brian and I used to meet) made one of his awesome carrot cakes (Brian's request). We all ate hamburgers, onion rings and chips, too!
Brian got art supplies as gifts: pens, pencils, pastels, paper. We all walked on the bike path in the cold. Brian was continuously exuberant and greeted everyone we saw. He wasn't at all interested in the scenery around him, except for the fact that it was in his old neighborhood in Ashland. He was extremely affectionate and wanted to kiss us all constantly. It was delightful to have him out, in our own little space in Ashland.
He had to return to the hospital at 8 pm. Mary and Terry followed us in their car, because they were going to stay with Brian while Mom and Dave chaperoned the Sadie Hawkins Dance at the High School (with Thom Little). So they helped settle Brian down after his big day, and read him Harry Potter.
Mom drove to the high school and met Thom and Dave. We watched, listened and played with balloons, while Randy Fitzpatrick spun the discs. He is a great deejay! The dance was a fundraiser for the Brian Kinkead Medical Fund, and was the best-attended Sadie Hawkins Dance ever! I got up and expressed my thanks to the crowd at one point. A great birthday gift to Brian!

Re: night vision: Coming around the corner leaving Clarity Cottage, Brian encountered the darkness. "Oh shit!" he exclaimed, and grabbed Dave. Night lights in the apartment are a must.

This was THE most wonderful day. Brian was so excited and happy! It was very sweet to be in the old neighborhood, near the house where he grew up. The Newtons let us stay in the cottage rent-free, too. It was our little home for about four months. Our first home with Brian.

Below are photos taken that day. Featured are Brian, Martha, Dave, Mary and Terry. Notice how thin Brian is and his curly reddish hair!

Walking the bike path

Kisses for Mom and Dave

The Birthday Boy at 18

Brian is holding the stuffed tiger from the senior class

In the bottom photo he is writing a birthday card for his friend, David  Silverman

Growing Independence

Friday 7 December 2001
(NOTES):
Tomorrow Brian gets to go on his first Home Visit, with Mom and Dave, for his 18th Birthday! On Sunday he will go with Marshall and Kellie, for his real birthday. More independent work : he cut his own fingernails (first time since ICU), made his bed, did laundry. To help with memory, he is writing down what he eats for meals.
Thom Little visited this afternoon at 3 pm!
Marshall and Kellie visited at 5 to 7 pm.
Mom read Harry Potter at night. (Sorcerer's Stone)

Door to Remain Open

Thursday 6 December 2001
(NOTES):
more work on independence today. He worked on balance and memory, getting dressed. For the first time, Marshall and Kellie came to see how Brian's therapy works. Since he will be going home soon, they need to know how to work with him. Brian also played soccer and walked outside later in the day, and worked on the computer. Comprehension skills and memory work are ongoing. 
In the evening, Dave and Brian were doing the usual hike around and around the Unit hallways (Brian's boundless energy requires these endless circuits). At one point, outside the closed gym doors, Brian noted the sign that read: "Door to remain closed when room is unoccupied". Thinking this utterly ridiculous, he responded, "Then how do you get in?" He and Dave returned to Brian's room, got paper and pens, and Brian wrote his question as a sign. He signed it, and the two of them, giggling madly, taped the sign to the door. It remained there until Brian left, when I retrieved it so it wouldn't get thrown out. The doors remained open thereafter, and Dr. Byers, the head psychiatrist, wrote on it, "Yeh?!"
Brian weighs 154 pounds.

Here is the original sign from that evening. Click on it to enlarge.

This is still one of my favorite rehab moments. They were so funny, and this joke dragged on for months after Brian left. He eventually created his own version of a proper sign for the door, and printed it up with the help of his speech therapist. If I can find a copy, I will post it at a later date.

Mother's Day

Mother's Day was begun by Julia Ward Howe in 1872 as an anti-war holiday. When I learned this, it felt okay to celebrate the day. I tend to resist a bit because I always think of it as another commercial holiday created for businesses to make money. I like the idea of the mothers resisting war. I also like honoring us. 
My sons won't go to war. Their fathers didn't either. My father did, but his own mother was no longer alive to worry about his safety. Although I have been through a huge loss with Brian, although I lost my eldest for 24 years, I don't know what it's like to have a son taken in combat - or taken permanently at all. I never want to know that feeling.
I am returning to this blog as of today. I have taken a much longer break than I ever intended. Brian is on my mind because he will be visiting in two months. It is time to complete the hospital diaries and move on to the next phase.
Stay tuned.