Day 836 – Grayson’s Journey

Dear family and friends,

Tonight at dinner I asked Grayson If my tea cup was hot or cold. He wrapped his hand around it and said it was hot. I then asked him what his smoothie cup was expecting him to say it was cold. He said it was "frosty".

This made me smile. Grayson always had an interesting vocabulary and used expressions, even when he was quite young, that you would expect of someone much older. His use of the word "frosty" made me wonder if he was being expressive (a peek at his old self) or if he reached into his mind for the word "cold" and grabbed a similar word he hadn't intended.

We may never know. We just keep plugging away trying to get him to express himself verbally rather than pointing. I can only guess how difficult it must be for him.

Peace,

Regina

Day 835 – Grayson’s Journey

Dear family and friends,

Tonight I had the distinct pleasure of assisting our church's new Cub Scout pack host their first Blue and Gold banquet – a celebration of Scouting's birthday. Watching the group of 1^st through 4^th grade boys stand before their beaming families (or should I say squirm rather than stand) to make presentations and receive awards is like no other experience. Boys in uniform posing for photos with their proud parents, each boy holding a new certificate, belt loop or advancement rank patch. Little sisters and brothers scampering around the perimeter of the room barely able to sit long enough to see older brother share his collection, his handmade map or bookends. Grandparents clapping the loudest for their own little Scouts.

Who wouldn't be moved by the sight of a school gym filled with laughter, decorations and good food accompanied by prayers of thanksgiving and promises of personal responsibility and citizenship?

Inevitably I was transported back to my own family's passage through the Cub Scout years. How grateful I am that Brant and I saw how precious those fleeting years were and that we made such a commitment to fully engage our whole family in them. Each of us learned much during that time. Yes, the boys learned many skills (and Lauren right along with them) which contribute to who they are becoming as adults. So, also, did Brant and I learn from those years of working together as a leadership team. We learned a lot about commitment and over commitment. I like to think it made us better parents – not perfect but better.

Who knew that coaching young minds, one young mind in particular, would be a lifelong calling for us? I know it was not God's plan to have Grayson be injured so severely. I do know that it is God's plan for us to respond to the challenge with faith and hope and love.

Thank you all for being part of our support team. You help us "Do Our Best".

Regina

Day 834 – Grayson’s Journey

Dear family and friends,

Let me share a scene from late tonight. While I was doing laundry and ironing, Grayson watched TV in our bedroom and laughed himself silly during "America's Funniest Videos". He was bright-eyed and fun all evening.

When I suggested it was time to brush his teeth, Grayson got up from his chair and walked down the hall toward his bedroom. He hesitated at the end of the hall as if he couldn't decide whether to go straight ahead into his room or turn right into his bathroom. I asked him what he was going to do. He pointed to his teeth and walked into the bathroom.

There are so many pieces to this simple scene that are encouraging to me. First, that he got up from his chair and walked down the hall merely as a result of the suggestion that it was time to brush his teeth. Grayson is always cooperative and it is easy to get compliance with one step commands. Usually, however, I have to ask him to stand up and then lead or invite him to walk down the hall. This time I said nothing else to remind him of the next steps. Then, he remembered where he was going – to brush his teeth. In most cases by the time he gets to the next room, he forgets why he is there and immediately picks up a book in that room. Tonight when he faced the confusion of two darkened rooms at the end of the hall, all I had to do was ask him what he was going to do and he was able remember, respond "teeth", and pick the correct room.

Granted he didn't turn on the lights nor did he pick up his toothbrush but we take every tiny step of improvement we can get.

Day by day, step by step, repetition by repetition – tiny, invisible improvements are made.

A grateful mom says good night to you all.

Regina

Day 833 – Grayson’s Journey

Dear family and friends

We are back home in Glendale and Grayson is snuggled in his own bed tonight. I managed to get 2½ hours of ski time in this morning thanks to Regina. She took care of getting Grayson ready and getting things packed up to go. When I returned all I had to do was get my stuff and the gear packed up and change out of ski clothes for the drive home. We hit the road at 1:00 PM and were home by 6:30 PM.

We were surprised and thrilled to walk into the house to find dinner almost ready and a beautiful table set for us by Austin and Xixi. Talk about an unexpected pleasure!

Grayson was a love all day. It was one of those difficult days for him – everyone running around moving the things that have quickly become familiar, then cramming them into the car, followed by the people, then leaving – followed by 5 hours of driving. He always does well and we talk to him about where we are going so as to relieve any anxiety, but it still has to be hard to deal with that level of change in routine.

Grayson and I are planning to return to Mammoth in April for Springtacular an annual ski event sponsored by Disabled Sports Eastern Sierra (DSES). We will have at least one more visit to Mammoth provided they have snow!

Pax!

Brant

Day 832 – Grayson’s Journey

Dear family and friends

Today was another beautiful day in Mammoth. The sun was out but so was the wind this morning. I was kicking myself for not putting on more clothing for our early morning ski runs – especially early as passholders had the opportunity to hit the lifts at 7:30 this morning. It was just starting to warm up when Richard and I headed back to the condo at 10:45.

Grayson had another great day at Disabled Sports Eastern Sierra (DSES) today. We had the awesome good fortune to get Zachery again as an instructor – and as always he was amazing with Grayson. We did runs today that I wound never in my wildest dreams believe that Grayson would ever again tackle – but today he did, albeit with a lot of coaching and encouragement. It was exciting and amazing to watch on one hand. On the other, I know that he will have to relearn many of the lessons he learned today because his short term memory is so damaged. I chose to live in the place of amazement and wonder because Grayson did some amazing things and that he enjoyed himself.

Today at one point we had to pair up to ride a 2 person lift. Zachery asked me if I wanted to ride with Grayson and I said to let Grayson decide. Grayson chose Zachery then gave him a big hug. That touched me and says a lot about the bond between student and instructor at DSES.

Pax!

Brant

Day 831 – Grayson’s Journey

Dear family and friends

It was a beautiful day here in Mammoth! The sun was out and while it got a bit warm late morning, the wind kicked up and kept the temperature comfortable in the afternoon. Richard and I tore up the mountain for 2 hours this morning then we went back to the condo to get Grayson ready for his lesson. Regina did the hard work – he was up, had breakfast, his teeth were brushed and he was shaved. I just got him dressed and gave him some lunch before we took off to Main Lodge for his afternoon of fun.

This afternoon Grayson had Zachery as his primary instructor. Zachery is one of the very few professional ski instructors on staff and is certified to work with an amazing array of disabilities. He is awesome with Grayson and totally gets his condition. When he came over to Grayson to greet him after greeting and welcoming him back, he asked what he was going to do this afternoon. Grayson replied, "Ski." Next question was what he needed to do, and Grayson pointed to his boots. Zachery said, "Great, how do we put those on?" Zachery gets cognitive impairment and every moment was therapeutic. He let Grayson do what he was capable of, and he helped with the rest.

Skiing? Wow! Zachery took Grayson on a few fast runs on Sesame Street, the beginner runs. After that we went all over the place! For those that don't know Mammoth, he spent most of his time on low intermediate runs. For those that do, he took 2 runs down Mambo, 2 down Stump Alley and one down St Anton. Quite a day indeed!

To bed early and an easy 10 hours for Grayson tonight!

Pax!

Brant

Day 830 – Grayson’s Journey

Dear family and friends

Today was our first full day in Mammoth for our mini-vacation. Richard and I were up and out early to hit the slopes while they were still in pristine groomed condition – and that they were! We spent two hours and we managed to ride 8 different lifts (some more than once) before returning to the condo to get Grayson for his lesson at Disabled Sports Eastern Sierra (DSES).

This afternoon Grayson worked with 2 instructors at DSES. He skied 8 or 9 runs this afternoon and was as tired as I was when he was done! Early to bed tonight for all of us.

Pax!

Brant

Day 829 – Grayson’s Journey

Dear family and friends

We have safely arrived in Mammoth! After an intense morning at work, we departed LA late this afternoon and arrived here in time for a late dinner. There is nothing like being away on vacation – especially in the crisp cool mountain air of a world class ski resort! The fire is crackling in the fireplace next to me as I write the blog tonight.

We have finished unpacking and making this condo our temporary home. Everyone is off to bed and ready to enjoy mountain activities in the morning!

Pax!

Brant

Day 828 – Grayson’s Journey

Dear family and friends

Today was a long and intense day for both Regina and me. Just taking a few days off can sure cause a whole lot of extra pressure at work, can't it? It is approaching 1:00 AM and I just finished my presentation for tomorrow and am about to head off to bed.

Tomorrow afternoon we depart for Mammoth with Rita and Richard. Looking forward to skiing on the snow that hadn't fallen yet when we were there in January! Grayson is excited too and he has been talking about it for over a week. Travel day tomorrow afternoon – skiing on Thursday!

Pax!

Brant

Day 827 – Grayson’s Journey

Dear family and friends

A busy and short week is underway! I had little time to come up for air today. Regina stayed home with Grayson as Anishka was off with her daughter for the holiday. Actually Regina worked from home for several hours before taking Grayson out to run errands just before noon.

This evening we attended a Fat Monday fundraiser for our church youth group. The theme is consistent with the church wide youth gathering in New Orleans this summer. The proceeds from the dinner will help our youth attend this event. It was a blast replete with good food and awesome music!

Grayson enjoyed his day with Mom and the dinner at church tonight. Life is good!

Pax!

Brant

Day 826 – Grayson’s Journey

Dear family and friends

Today was a wonderful day!

We hopped up to get to church by the crack of 11. (Remember – it takes 2 hours to get Grayson ready in the morning, and he needs about 10 hours of sleep a night.) This was the last Sunday before Lent and in the tradition of our church, we put our "Alleluias" in a special box to be opened on Easter. There was a baptism this morning also and it led to a portion of the sermon to be devoted to Matthew 5:16 - letting the light of our good deeds shine before others that they might see the hand of our Father in heaven through us and praise Him. We had a practical exercise in church to share the light we saw in someone sitting near to us. What a wonderful and affirming morning!

After the service Grayson accompanied Regina and I as we participated in a lunch with our confirmation class mentees – great 8^th grade kids that we are developing a relationship with through their confirmation process. Today we shared our passions as a group – mentors and confirmands. What another great and uplifting experience! The time flew by as we shared and I was struck by the passions of all.

As one of the other mentors was sharing his passions and story, he let slip that he had retired from the company that once was Bendix – the same company that my father had retired from in 1980. I spoke with him after the session and his reaction was, "Chet Reed? Yes I knew Chet Reed!" How cool is that! I never knew and I sang with his son in the choir for years! We chatted for some time and made a connection that was very special.

Just when I thought that the day couldn't get any better, Austin and Xixi called and invited us to dinner at a Peruvian restaurant that they found on a walking tour in Pasadena this morning. We joined them this evening and had a delightful meal. The Peruvian menu is sort of an Asian-Western-American fusion thing – quite special and full of unexpected flavor combinations. Great food and great company!

Grayson was happy to go along with us to every fun thing! He was a happy delight at our various stops along our day. Yes indeed – today was a wonderful day!

Pax!

Brant

Day 825 – Grayson’s Journey

Dear family and friends

Today started as a beautiful sunny day. We had a relaxed morning and an easy breakfast before we started to get going on being responsible adults. Regina took care of several errands while Grayson and I accomplished several home maintenance chores.

We were thrilled to see Austin and Xixi this evening as they came by to help with some heavy lifting (more household repair activity) and for dinner. We managed to accomplish the repair work I needed to deal with AND get the ski racks on the car for use next week. Thanks Austin and Xixi!

Grayson was thrilled with the extra activity and to see his brother and Xixi (who he worked with at USC for several years). It's not hard to believe that he gets tired of spending all of his day with Mom and Dad – and Anishka. Variety is still the spice of life – yes?

Pax!

Brant

Day 824 – Grayson’s Journey

Dear family and friends

An end to a very intense week! I have taken on a special near term assignment at work and am up to my hubcaps in activity. One thing about my job – it is never dull and always challenging! The extra workload as we prepare to take a few days of vacation next week keeps us both busy.

Grayson had another alert day today. We are hoping that this good cycle will stay in play for the next week as we prepare to get away for a few days. We'll be around him a lot more over the weekend and can see more accurately where he is.

Friday night is "collapse" night – early dinner and relaxation. I'm done!

Pax!

Brant

Day 823 – Grayson’s Journey

Dear family and friends

The sun was back today! It was a bit chilly in the morning and evening, but it warmed up almost to the 70s today – signature Southern California. We don't tend to think about it much until it rains!

Grayson was busy with Anishka all day. He had 2 walks, practiced writing some letters (today he was working on "X") played some games that required placing shaped objects in matching holes, did some reading – sort of a normal day for him. He helped me prepare dinner by getting materials out for me. Discerning the Extra Virgin Olive Oil from Peanut Oil or Canola Oil requires concentration and effort. It's not real fast but it is therapeutic!

Grayson had another very alert day. I wish that we could get his verbal skills to keep up with his other alertness. We have an appointment soon with an expert in this area that we hope can shed some light.

Pax!

Brant

Day 822 – Grayson’s Journey

Dear family and friends

It was another very cold rainy day here in Southern California – very cold being a low of 36 and a high of 52. This time of year when I think that Mother Nature is making me uncomfortable, I talk to my coworkers in St Louis, Seattle or Philadelphia. I'm lucky to live here – yesterday was a snow day in St Louis!

I only saw Grayson for a few waking minutes today between work and yet another meeting at church (lots going on there this week!) Regina reports that Grayson had yet another very alert day – this is about 6 in a row. It is clear that we are in the midst of another "up" cycle. I hope it continues for another week or so!

Alert is good!

Pax!

Brant

Day 821 – Grayson’s Journey

Dear family and friends

Regina surprised me with a special dinner after a church council meeting this evening. Oh – and I completely forgot to post the blog. She is a very distracting woman, you know!

Happy Valentine's Day!

Brant

Day 820 – Grayson’s Journey

Dear family and friends

It was a cloudy and rainy day today in LA – unusual for those of us that don't know what daytime is like without sunglasses!

The rain kept Grayson indoors most of the day, but it didn't dull his senses. Grayson was very alert and unusually focused today. At one point this evening I was washing my hands and he came in and used the restroom. All by himself. While he has perhaps once done that with Regina, I have not seen him do that since his injury. As much as we wish it were different, he is generally incontinent and we manage it by taking him to the restroom on a schedule. For me this was a first. This evening with Regina Grayson continued to be very alert. He even made a Valentine for Anishka!

Back on an upward cycle!

Pax!

Brant

Day 819 – Grayson’s Journey

Dear family and friends

It was a Sunday-off-to-church morning this beautiful day. While seemingly always a challenge to get to church on time, it is amazing how we always manage to make it with time to spare. Having a wife that is always a teammate in getting Grayson ready is the secret. We can do together in 1½ hours or less what it would take one of us 2 hours or more.

Grayson was particularly attentive during the sermon today. At one point he sat straight up, leaned forward and appeared to hang on Pr Kurt's words. It was a great service this morning as we also baptized the grandchild of one of our longtime members. I love it when we leave church uplifted and ready to charge into the new week with renewed vigor!

Our afternoon was occupied with lunch then preparing to meet the new week – chores and the like. I did manage to get the grocery shopping out of the way yesterday so my sole task this evening was to make the stew that I had planned and we now have food prepared for the next three nights!

Blessings as you all head out to do your work for the next week!

Pax!

Brant

Day 818 – Grayson’s Journey

Dear family and friends

Today was a wonderful and relaxed day. We got Grayson up around his usual time – 9:30 AM – then had a relaxed breakfast and easy going morning. The day was primarily occupied with chores, activities and tasks of living that tend to get put on the back burner during the work week. Much was accomplished today and it will make for a much more enjoyable week!

Grayson was very alert for another day. Verbal skills notwithstanding, he was at the top of his game in some areas. Grayson and I went to the home store today to get materials for a project and he was my cart pusher – following me around as I looked for shiny objects to collect in my cart.

After we returned from the home we decided to grocery shop for the week. We laid in supplies for the week as our last errand of the day.

Pax!

Brant

Day 817 – Grayson’s Journey

Dear family and friends

Today was a beautiful and warm day here in LA – sunny and mid-70s here. Anishka took Grayson on a long walk around noon. I opened all of the windows and let the cold air out of the house and allowed the warm fresh air to come in.

It looks as if Grayson is on an upward cycle. He was very alert today. At one point this evening he was singing a song without being led. He maintained pitch and, for the first time in a long time, maintained tempo. It looks like we may be in for a good week or so. I hope it continues through the time we go back to Mammoth later this month!

This evening we decided to go out to dinner and see the newly rereleased 3D version of Star Wars: Episode I - The Phantom Menace. What fun to see the movie all over again! I can't say that the 3D did much for me, but it was fun to see the movie on the big screen again. It was also fun just to go out for something other than a meal!

Enjoy your weekend!

Pax!

Brant

Day 816 – Grayson’s Journey

Dear family and friends

Just a day after I wrote about the "freedom to be able to focus on our work", Anishka had to stay home with a sick daughter. Regina stayed home with Grayson while trying to keep ahead of her work responsibilities. We are way better off than we were in October, but sudden changes to the plan are not always easy to work with. Fortunately today we were able to make it work with minimum effort on my part. Thank you Regina for adjusting your plans!

Grayson had alert eyes and was very observant today, but he was as quiet as a church mouse. He is so non verbal that I am becoming increasingly worried that the speech "muscles" are starting to atrophy. He has an appointment in a few weeks with a specialist for an evaluation. Hopefully we can stem the decay and start rebuilding verbal skills.

Tomorrow Anishka will be back – a normal day for all of us!

Pax!

Brant

Day 815 – Grayson’s Journey

Dear family and friends

After a rainy day yesterday, the sun was back out shining here in Southern California!

Grayson had a normal day with Anishka. One of the things that I notice now that we have help to care for Grayson is that there is a large chunk of the day where we know that he is safe and well cared for, but that we know little of the details of his day. It is sort of like a parent of a school-aged child where we only get glimpses of their day. In some ways we long for knowledge of the details of what filled his day. On the other hand we are enjoying the freedom to be able to focus on our work.

It is the dilemma of a parent of a young child – all over again.

Pax!

Brant

Day 814 – Grayson’s Journey

Dear family and friends

Grayson was a bit more alert than he has been for the past few days, but still on the down side of his current cycle. Due to the rain today, Anishka was unable to take him on his walks – too bad since that is good exercise and activity for him. They stayed indoors and read, played games and did puzzles as therapy today.

This evening Grayson and I watched Iron Man while Regina was out working with a new Cub Scout pack. We had a fun evening with a fun movie. Downtime is good!

Pax!

Brant

Day 813 – Grayson’s Journey

Dear family and friends

Monday, Monday!

Grayson was a bit slow today as he has been for the past few days. He has been particularly non-verbal as well as slow to do much. Clearly he is in the middle of one of his down cycles. The cycles are now part of our life and we have become used to them, though we are never fond of the down cycles. With God's help he will be back on the upswing soon.

Pax!

Brant

Day 812 – Grayson’s Journey

Dear family and friends

While most of the United States was thinking that this was Super Bowl Sunday (which it was) it was also Scout Sunday, celebrating the start of Scouting Anniversary Week. Scouting Anniversary week runs through next Saturday which is Scout Sabbath and commemorates the founding of the Boy Scouts of America in the United States in February 1910. Our church was packed with Scouts of all shapes and sizes this morning and many of the worship assistants performed their duties in Scout uniform instead of traditional vestments. It was quite a sight! Even Grayson appeared in the Assistant Scoutmaster uniform that he wore prior to his injury.

We did watch the Super Bowl today and the most fun thing for us after the game was to watch Ramses Barden touch the Vince Lombardi trophy after the game as it was carried to the podium. Ramses was a classmate of Grayson and a teammate of Austin at Flintridge Prep. Probably the only Flintridge Prep student to go on to the NFL and now he has a Super Bowl ring to go along with his 2003 CIF Championship ring. How cool is that!

Austin and Xixi dropped by for a short time to see the end of the Super Bowl and so Grayson got a full dose of Scouts, sports and family today. Tomorrow we are back to the regular schedule!

Pax!

Brant

Day 811 – Grayson’s Journey

Dear family and friends

Today was my first full day back in the Pacific Time Zone since Sunday! Grayson and I both lounged a bit as Regina scurried off to a high school reunion. While it was an unusual reunion year – the 42^nd – it was actually a 60^th birthday party for the entire class – an awesome reason for celebration! Grayson and I tried not to get into too much mischief in the absence of adult supervision.

When Regina returned from her reunion and Grayson and I returned from our afternoon of errands, we went to an early dinner of sushi. We were home early and most were in bed early tonight.

Weekends are good!

Pax!

Brant

Day 810 – Grayson’s Journey

Dear family and friends

I arrived home from the airport about half past 10 this evening and Grayson was up in our room with Regina watching a movie. Now when Grayson watches a movie or TV he is frozen. It is extremely rare that you can get his attention to do anything. One of the problems with his injury is that he simply cannot focus on one thing if something else is going on around him. When I walked in the room after having been gone all week, Grayson pointed at me then he stood up and came over and gave me a hug – even as the movie was playing. That felt pretty good.

The gift of unconditional love is special.

Pax!

Brant

Day 809 – Grayson’s Journey

Dear family and friends,

After three days of encouraging signs of improvement, Grayson had difficulty following one step directions today. He barely spoke one word answers and struggled with the simplest tasks of clothing management.

The vagaries of anoxic brain injury are a roller coaster ride.

Life is a gift. Accept it.

Peace,

Regina

Day 808 – Grayson’s Journey

Dear family and friends,

Grayson's caregiver asked him around lunchtime if he was hungry. "Yes, I am", was the reply.

When she was leaving at the end of the day she gave him a hug and said goodbye. "What do you say?" I prompted him. "I'll miss you" he replied.

Wow! Two spontaneous, albeit mumbled, multi-word sentences in one day.

Enough said.

Thanks be to God.

Regina