Tomorrow is a travel day – a flight to Portland then into a rental car for a drive to Eastern Oregon where the family farm is located. Actually we will be staying just across the border in Walla Walla Washington. We have dinner plans with several cousins tomorrow and we are so excited about seeing them.
31 May 2012
Day 928 – Grayson’s Journey
Tomorrow is a travel day – a flight to Portland then into a rental car for a drive to Eastern Oregon where the family farm is located. Actually we will be staying just across the border in Walla Walla Washington. We have dinner plans with several cousins tomorrow and we are so excited about seeing them.
30 May 2012
Day 927 – Grayson’s Journey
29 May 2012
Day 926 – Grayson’s Journey
28 May 2012
Day 925 – Grayson’s Journey
27 May 2012
Day 924 – Grayson’s Journey
26 May 2012
Day 923 – Grayson’s Journey
25 May 2012
Day 922 – Grayson’s Journey
Dear family and friends,
Grayson is still very much in an up cycle. His eyes are brighter, his movements are slightly more purposeful, and he tracks our conversations better.
This evening I was engaging him in our usual style – my starting a sentence and him finishing it. His answers are usually the shortest possible – one word. I frequently ask him to repeat the answer in a complete sentence. At one point Brant was putting a DVD in the player and I asked Grayson what we were waiting for. He pointed to the TV and said "movie". When prompted for a complete sentence he responded with "Waiting for dad to put on a movie". My jaw dropped. An eight word sentence!
When I asked him to tell Brant something, he would walk right over to him and relay it to Brant in multi-word phrases.
Up cycles are good.
Have a wonderful weekend, friends.
Peace,
Regina
24 May 2012
Day 921 – Grayson’s Journey
Grayson had a good day today. He is in one of his alert cycles and has had trouble sitting for more than 3 seconds. However walking was a good thing, and Anishka took him on two long ones. The weather was cooler also making the longer walks more pleasant for both patient and caregiver!
This evening Grayson joined me at church to install a new printer. He was so active I could barely keep him in the room with me! I finally had to close the door to keep him close by. That, along with a favorite comic book, kept him occupied while I finished my tasks.
While “active” is often more difficult to deal with, I’ll take it any day because he is so much more fun!
Pax!
Brant
23 May 2012
Day 920 – Grayson’s Journey
Dear family and friends,
Should we ever get complacent about the subtle risks surrounding our care of Grayson, a day like today can remind us we must always be vigilant.
As we have mentioned in the past, when we put Grayson to bed at night, we always set a perimeter alarm just outside his bedroom door. This way if he crosses his bedroom threshold we are alerted, no matter where we are in the house – even in the middle of the night. Depending on his cycle he either gets up several times in the first hour or not at all. An hour or so later one of us opens his door, peeks in on him, covers him up if necessary, and resets the alarm. Up cycle or down cycle, once he is asleep he never gets up and has to be encouraged to wake up and get out of bed in the morning.
Early this morning, about two hours before we usually get Grayson up, Brant passed by Grayson's room and heard him giggle. Brant went back to the bedroom door and was shocked that Grayson was not in his bed. Then he heard Grayson giggle again. Way over in a corner, on the other side of the room, Grayson was standing in the semi-darkness with a comic book giggling away. This was a first – to be awake so early and to be out of bed.
Then came minor shock number two. Grayson's face, mustache, arms, pillow and sheets were smeared with dried blood – obviously from a significant nose bleed sometime during the night.
Just a nose bleed - no big deal for you or me but it reminded us that Grayson can't ask for help. Even at nearly 27 years old, he isn't able to take care of this routine medical situation for himself. He doesn't have mastery of his faculties enough to devise and execute the simplest response to a need – even if he registers that something is wrong. What if the nose bleed had been serious and hadn't stopped on its own? What if he were choking or having trouble breathing? What if … fill in the blank with any number of other scenarios. We don't dwell on those what ifs, all our days are numbered and we choose not to live in fear. But it does remind us to be vigilant. Over the last two and a half years I have found myself frequently standing in his doorway, peering into the darkness of his room. I watch to see if his chest rises and falls with his breathing – just as I did when he was an infant.
Whoever said that once you are a parent, you are always a parent sure got it right. I just never imagined it this way 27 years later.
Grateful to be someone's mom.
Peace,
Regina
22 May 2012
Day 919 – Grayson’s Journey
21 May 2012
Day 918 – Grayson’s Journey
20 May 2012
Day 917 – Grayson’s Journey
Dear family and friends,
Lauren flew back to Kentucky this morning after a wonderful week's visit. She impressed us with how much she matured in just nine months.
The clarity of hindsight lends insight to just how much she was affected by Grayson's injury and subsequent dramatic changes. Gone was the older brother she knew and the familiar patterns and relationship they had developed throughout her childhood. Instead there was an unfamiliar person -- a little frightening and unpredictable with strange habits, smells, mouth noises, posture, and poor communication skills. He took a tremendous amount of mom and dad's attention just when she was going through her own growth and challenges.
When she left it was hard at times even for her to be in the same room with Grayson.
Yesterday, on her last full day on the West Coast we spent the day at the Los Angeles Zoo – Lauren, Grayson, Brant and I.
While Brant stood in line to get our admission tickets, Lauren offered to put sunscreen on Grayson. When we entered the turnstile and started up the incline into the park, Lauren took Grayson's hand and offered to trade off guiding him along our walks. This was something she would not have done before she left. It touched me so deeply to see a genuine affection return between them. What grace filled her to allow this healing and generosity.
I can say without any doubt that saying goodbye to her today was filled with joy, quite a contrast to the pain, fear, and desperate hope I experienced when she left in September.
For homecomings, growth, and family I give God my thanksgiving and praise.
Regina
19 May 2012
Day 916 - Grayson's Journey
This evening Austin and Xixi joined us at our favorite seafood restaurant for dinner. After dinner we came back home and relaxed and enjoyed each other’s company until the wee hours.
Grayson was engaged and enjoyed himself all day. The walking at the zoo did both of us some good!
Day 915 - Grayson's Journey
17 May 2012
Day 914 – Grayson’s Journey
Our family and friends,
For everything there is a season…
Today our caregiver informed me that she will be pursuing other employment. She passed the state boards for her LVN license last month and needs to get six months practical experience under her belt to be hired as an LVN. Obviously my response was conflicted. I wish the best for her career and her family but I am SOOO sorry to lose her.
These last six months I have felt absolutely secure that Grayson was not only well-protected and cared for but loved. I have been able to go to my office daily without even the slightest concern for Grayson. I knew that he was happy and stimulated intellectually and physically. Anishka has been a wonderful blessing to our family and she will be to the future patients she will work with as well.
And so the interview process begins once again. We haven't come this far to fail so we trust we will find another loving, sensitive, calm person to share a chapter of Grayson's journey.
We are grateful that Anishka has offered to stay with us through the interview process for her replacement and we pray for patience in the next few transitional weeks.
Filled with hope,
Regina
16 May 2012
Day 913 – Grayson’s Journey
Dear family and friends
Today was yet again a warm Southern California day – unusual for this time of year. Normally all of the locals would be saying, "It is so cold with all this morning fog. What is up with this?" They completely forget that every year May and June are foggy and cool. Once the haze burns off there is nothing to keep the temperatures in check. This year there just hasn't been much morning fog!
Tonight Regina and Lauren brought dinner with them when they came home from work. We had a nice dinner together before retiring to watch a movie – Cars 2. It was a cute and fun movie – just what the doctor ordered after a long day!
Pax!
Brant
15 May 2012
Day 912 – Grayson’s Journey
Dear family and friends
Another stunning Southern California day! We need to enjoy them before the mercury reaches the triple digits!
Regina has been fighting a chest infection for the past several days and she is trying to keep it from putting a damper on Lauren's visit. For a big chunk of her day today, Regina just stayed in bed to rest. Lauren spent lots of visit time with her in the bedroom.
Grayson has enjoyed having his sister around again. Evenings are full of chatter and conversation as always. With Lauren around there may be several going on simultaneously! What a blessing she is.
Pax!
Brant
14 May 2012
Day 911 – Grayson’s Journey
Dear family and friends
Today was another beautiful Southern California day – we are so spoiled because we get so many of these!
Lauren and Regina were off doing Mother-Daughter things today while Anishka watched Grayson and I did my work. This evening we went out to our favorite sushi place for dinner and had a delightful time and a wonderful meal. We returned home to watch one of my birthday gifts – Thor – a movie I had never seen. Thanks Austin and Xixi. Now I know the rest of the story behind The Avengers!
Grayson seems happy that Lauren is home. I am thrilled and so is Regina. The week will go by way to fast I'm afraid.
Pax!
Brant
13 May 2012
Day 910 – Grayson’s Journey
Dear family and friends
What a glorious day! The weather was beautiful, and we had planned a Mother's Day / Brant's Birthday celebration at Rita and Richard's house this afternoon.
At church this morning, Regina stepped out just before communion to take Grayson to the rest room. I took communion and shortly Regina came back with Grayson. A few minutes later Regina came down the center aisle of church for communion – with Lauren!
For those that don't know, Lauren moved to Kentucky last September and we have talked but have not seen her since then. This was my big birthday surprise from Regina – having Lauren home for a week. Many eyes were upon us at church this morning as my reaction must have said it all – something was definitely up!
We went over to Rita and Richard's and had a wonderful afternoon relaxing in the Southern California sun and whipping up a spectacular dinner – cedar plank grilled salmon with garlic and oregano,; grilled asparagus marinated in olive oil, balsamic, garlic and sesame seeds; portobello mushrooms studded with pecorino romano, garlic, rosemary and pine nuts. Rita made her famous tortellini pasta and Austin and Xixi brought an awesome desert. A feast for a king!
Grayson was happy to see his sister. Regina was thrilled to have all three kids here for Mother's Day. I was ecstatic to see Lauren and to be able to spend time with all my kids. What a blessed birthday!
Pax!
Brant
12 May 2012
Day 909 – Grayson’s Journey
Dear family and friends
Today was a beautiful day and a full day. We slept in a bit this morning before heading out to tackle errands, now that my knee is doing pretty well. Regina went to the La Canada Farmer's Market while I took Grayson to get his hair cut. More like a sheering actually. His thick, curly hair had gotten long for him in the past few weeks. It will be nice for him (and cooler) to have it shorter.
This afternoon Grayson and I went to the market to gather items for tomorrow and the week ahead. As always Grayson was my wing man, following me with the cart wherever I went.
While at the store, Austin contacted us to see if we wanted to go see The Avengers this evening. Would we? Grayson and I grabbed a quick dinner at home then headed off to the theater to meet up with Austin and Xixi to see the movie. What a fun film! Grayson and I thoroughly enjoyed ourselves and Regina was a dream to allow us to abandon her this evening.
A fun and full day!
Pax!
Brant
11 May 2012
Day 908 – Grayson’s Journey
Dear family and friends
The end of the workweek! The knee continues to get stronger and the crutches are (knock on wood) a thing of the past. I even drove the car for the first time this week! Now to continue rehab exercises to build strength.
Grayson had a relatively normal day today. Anishka was with him during the day and they did their normal activities. This evening Grayson and I went out to bring sushi home for dinner. After dinner we settled in for a movie.
A great end to a good week!
Pax!
Brant
10 May 2012
Day 907 – Grayson’s Journey
Dear family and friends
I apologize if the blog has been a bit more about my journey than Grayson's this week.
My knee continues to get stronger and today I started my rehab exercises. While still a bit "mushy" it is feeling more like a knee than a bowl of jelly! Today, while I strayed little from my home office, my crutches mostly stayed in their corner. I think that I may be rid of them now as long as I don't do something stupid.
The weather was warm here again today. Grayson and Anishka went on their walk as early as possible to beat the heat – they failed! The temperature was already climbing and there was no breeze today so they were looking for a cold drink and some shade when they returned. Keeping cool was the theme for the day!
The weekend is almost upon us. Fortunately it looks as if I will be mobile enough to enjoy the beautiful weather our location affords us.
Pax!
Brant
09 May 2012
Day 906 – Grayson’s Journey
Dear family and friends
The knee continues to heal nicely. Pain is low and I reduced the crutch use from 2 to 1 and was walking gingerly on flat ground without it sometimes. I made it outside for the first time since coming home from the surgery as Regina took Grayson and me out to dinner. The handicapped parking placard for Grayson also was useful for me today. And what a wonderful evening to be outside! We dined outside as the sun set over the foothills.
I did ease back to work for a few hours more than I planned, but put my leg up on an ottoman in my home office to take my calls. I will try and keep another short day tomorrow in order to maximize my rest and also to start the first of my rehab exercises. They are easy at first, gradually increasing in intensity. Fortunately ski season is a long way off!
Grayson was most affectionate today, and he seemed relieved that I was not using the crutches as much. While he is generally very affectionate, he hugged me several times more than I expected today. He is a loving person and he now has no governor on his affection for those whom he cares for.
Pax!
Brant
08 May 2012
Day 905 – Grayson’s Journey
Dear family and friends
My knee is healing nicely, if low pain is any indicator! Today I spent another mostly low impact day. I slept in until 9:30 (they tell me that resting the knee and keeping it elevated is important the first few days after surgery), spent the morning on the couch working off some administrative backlog using my company laptop, then spent the afternoon catching up on personal email before settling back on the couch for a night of rest and a reduction of backlog on the saved TV shows. After two nights, there is some substantial free space on the DVR. Backlog reduction and resting the knee was the theme of the day!
Grayson looked at me strangely again as I was hobbling along on my crutches. Anishka was sweetly caring for Grayson but offered to help me as I needed it too. They went for their first walk as quickly as they could as the temperatures (or as our favorite weather person calls it – "temp-a-tures") were in the 80s today and will be in the 90s tomorrow. Where is that May-June gloom? Without the "gloom" there is nothing to keep a lid on the Southern California heat!
Tomorrow I'll "ease" back into work for a few hours of teleconferences from my home office – continuing to take it easy and recover for the most part. Perhaps I'll even step outside for a minute!
Pax!
Brant
07 May 2012
Day 904 – Grayson’s Journey
Dear family and friends,
Brant's knee tune-up went extremely well today and he spent the day camped on the couch.
Grayson looked with much curiosity at the bandage wrappings on Brant's knee and even more at the unfamiliar crutches. He was particularly tender with his dad today and the love he feels is quite apparent.
We all kept a pretty low profile tonight and let Brant snooze and spend the whole evening watching TV – a rare treat for him.
Thank God for insurance, good surgeons, nurses and anesthesiologists.
My boys are all snuggled safe in their beds.
Sweet dreams,
Regina
06 May 2012
Day 903 – Grayson’s Journey
Dear family and friends
Today was a full day!
We started out with church, not particularly unusual for Sunday. Church was followed with a congregational meeting – OK so that was different and kept us until almost 2:00 by the time all was said and done. Lunch and groceries and – oh my – it's 5:00! What happened to Sunday?
The retired pastor of Salem spotted us in church this morning and gave us a video of Oh, Jonah! – the Salem school musical in 1997. Grayson was a 5th grader at the time and played Jonah. We watched the entire video when we returned home and laughed and cried the entire time. All three of our kids and all of their friends participated in this musical. What a hoot to relive this moment – and to see just how much of an entertainer that Grayson was even at that age.
Tomorrow I'm going in to have surgery on my left knee to remove some torn meniscus – and hopefully help keep me good for another 100,000 miles. Let's hope that this outpatient procedure is uneventful and that recovery is as quick as I have been told. With God's help I'll be back on the air in a few days!
Pax!
Brant
05 May 2012
Day 902 – Grayson’s Journey
Dear family and friends
Today was the first day off at home for me in weeks! Grayson accompanied me in my chores and errands today, after he got up. He was a good, albeit mostly silent, companion today. I'm trying to get several things finished as I am having some minor surgery on my knee on Monday, and I expect to be out of commission for a few days. Time is pressing!
Grayson is still operating on the "up" cycle that he has been on since our ski trip. I suspect that the physical activity and the cognitive workout that he enjoyed at Mammoth is mostly to blame. There is a lesson in here – meet him where he is with a challenge that he enjoys and great results happen. The reality is that winter is only so long. Now the challenge is to find summer activities that fit the same criteria, along with unlimited vacation time and money!
Pax!
Brant
04 May 2012
Day 901 – Grayson’s Journey
Dear family and friends
I worked from home today. A little while after Anishka left Grayson wandered into my office and said, "How's it going?" I about fell off my chair! Grayson is very non-verbal anymore, he rarely uses more than two words in a row and he almost never initiates a conversation. I quickly gathered my wits and said, "Great! How is it with you?" "Good." Was the reply – a bit more typical for Grayson. Even when you think that you know what to expect, there is the surprise.
I am dying to know what is going on in that mind. Something is cooking but we have no idea what. Perhaps someday we will have the ability to get a glimpse.
Pax!
Brant
03 May 2012
Day 900 – Grayson’s Journey
Dear family and friends
Wow! Another 100 days – almost two and a half years since the incident. How life changes so quickly and so permanently. Plans and expectations forever altered.
Grayson will never be his former self. We have come to grips with that. He is happy, he is loving and he is loved. He will need round-the-clock care for the rest of his life. The level of therapy that he gets will determine the level of competency and independence that he will enjoy. And the term "independence" refers to tasks like can he brush his teeth, or does he need to have someone do it for him. He will require supervision for the rest of his life.
He can have fun – the ski trip we just took is a good example. He can improve with continuous therapy – last week proved that also. He has lost some capability since leaving his therapeutic program – we measured this last month. Therapy for the brain injured is essential. Therapy is also very expensive and is rarely covered by insurance beyond a certain point. We are beyond that point.
So at Day 900 we are in a position of stability. Our health is in good shape so that we are able to care for Grayson and provide a care giver while we are working.
And most important of all, Grayson still provides a lot of joy in our lives. Like all children there are times of frustration, but joy generally abounds. We are challenged but we are blessed.
Pax!
Brant
02 May 2012
Day 899 – Grayson’s Journey
Dear family and friends
I did promise a debrief on Sunday's last day of skiing before we headed home, so here it is!
Grayson and I got to Disabled Sports Eastern Sierra (DSES) as early as we could manage in order to take advantage of the good morning snow. As the day warms the snow it gets soft and becomes more difficult to ski on. We were skiing by 10:00 which, for us, wasn't bad! It takes about 2 hours to get Grayson over to DSES, then more time to put on boots and actually get out to the snow.
Sunday morning we had a team of 3 DSES instructors with us – and it was a good thing! We were able to set up a protective "bubble" behind Grayson so that two instructors could work with him without fear of someone skiing in too close. One of the instructors was one that was with us the previous Sunday and was amazed at Grayson's progress. One of the others was a High School Junior, somewhat of a ski prodigy, that regularly volunteers with DSES and has worked with Grayson before. Her warm smile and quiet competency always charm Grayson. Her father was also with us today (the third person) and we had a ball! We let Grayson take the lead in setting the pace sometimes, they coached him through some of the more difficult runs, and generally we had a blast.
In the afternoon we had the ski wizard – Zachery. Unfortunately I had to go pack up our room, but Grayson had fun. At one point in the afternoon Grayson went up Chair 3 and came down the backside, then went down Fascination, an expert run. He took a break (10 minutes) about a third the way down the run, then he finished. He took a few runs afterward on Sesame Street, then he went for a final run down Broadway.
By 3:00 I was back on the slopes and I caught up to see Grayson do his final run down Broadway. Grayson went back in and I took one final run for the season - Chair 3 to Fascination. It was a blast!
We then changed out of our ski clothes and piled in the car and started to head down the mountain for home! This was a highly successful and fun trip for Grayson, and it was a blast for me to watch hin come so far in 9 days.
Pax!
Brant
01 May 2012
Day 898 – Grayson’s Journey
Dear family and friends
It was a gloomy and drizzly day here in LA. I guess that the May/June gloom has officially arrived!
Because of the rain, Grayson spent the day inside – quite a change after spending so much activity time outdoors! Grayson and I managed to run a few errands late today so at least he didn't spend the whole day indoors.
It has been a busy time since returning home from Mammoth. I still have video to watch and share and stories to tell. I hope to get to these soon!
Pax!
Brant