July 12, 2012 - Five Years Later

Today marks the five year anniversary of Tim's accident. When I asked Tim how he felt about that, and if he'd like to see a post of some sort on the blog, he said yes - and he would write it himself. So, what follows is his entry - I added some photos. Amy and I couldn't have said it better. Thank you - once again - for your support, encouragement, prayers, thoughts, positive energy, love, questions, visits, food, gifts, and time over these years. The initial donations to the Butters Fund - which we did not think we would need - allowed Tim to stay in Boston continously while we figured things out. Now, it's up and away for him.   



Thank you all for reading this. Thank you for remaining interested in my recovery, and for supporting me and my family. Thank you for checking in on what has been an almost unspeakably bizarre 5 years in my life.

I'm writing this on a sunny day, overlooking Card Pond (in West Stockbridge, where the accident happened). At one point this may have been an emotionally charged trip, but looking out over the lilypads and the smooth, cool water makes it difficult to be anything but tranquil. Though I'm still living in Boston for therapy, work and school, West Stockbridge is my home. I thank all of you who have done so much to make this little place the welcoming and nurturing town that I owe my life to.

For those who haven't seen me recently, I'm walking primarily with crutches. I haven't used a wheelchair in three years, but it's an ongoing effort to stay out of one. The left side of my body has mostly recovered; while it can still be spastic, it is strong and reliable. My right side is improving at a slower rate, but has not plateaued. This week. I started a program at Boston Medical Center. It is based on the excellent Reeve Foundation NRN which I attribute so much of my recovery to. I'll be outside the bounds of the study, so new devices, drugs and treatment modalities can be combined with the intense treadmill sessions to hopefully give me an even better outcome on my right side. I'll couple this with rowing, and the general benefit I take from actively walking in my day to day life. My medical team and I expect that I will continue to improve, so we're not yet ready to place limits on what my body will be capable of in the future.

Outside of my physical efforts, I've had incredible opportunities to learn about my injury from a clinical perspective. Dr. Allen Kantrowitz and Frank Reynolds are two among many who have been tremendous friends and mentors. Both of them have recognized my deep and genuine urge to understand neuroscience, and neither of them penalized me for my spotty academics. They have encouraged and guided my studies, and given me the confidence to take charge of my future using my intellect in a way I never had. These two men represent a small fraction of the goodwill that has been shown to me. In 2007 I was at my most vulnerable, and today I'm at my absolute strongest. My growth is a testament to the generosity and talents of you all, the people I'm proud to call friends and family - in the Berkshires, Boston and around the world.

I've also undertaken some volunteer efforts that have allowed me to stay in touch with the newly disabled as well as chronic victims of spinal cord injury. My perspective on this devestating condition reflects not only my trauma and limitations, but the severe losses my many friends have suffered. They've been my inspiration, and I hope to do them justice in my coming endeavors.

Despite this, no facet of my life has gone untouched by this accident. I've had a few indescribably painful and difficult periods. But through it all, I've been supported in such a way that my focus could remain on my rehabilitation. I'm so grateful for the sacrifices that have been made for me, espicially by my parents, Brian and Amy, and by my sister Jancy. I hope to see the second half of this decade bring the same good luck to myself and you all that I've been so very blessed to receive this far.

With love and immense gratitude,

Tim
www.facebook.com/Mr.Butterworth

Three years

Three years later and Tim keeps pushing ahead.  His internship at Invivo is going well. He is mid-way through an interview process and hope to be included in a study at Boston Medical Center  The study  involves neurotherapy as an alternative to one of his medications that controls muscle spasms. When he gets accepted, we'll share more.

His Latest Move

On Saturday, March 20, Tim attended a black tie gala (fortunately, the tie was optional) for the Greater Boston Chapter of the National Spinal Cord Injury Association at the Hyatt.  During the event, he was introduced to Frank Reynolds, Chairman & CEO of InVivo Therapeutics , based in Cambridge.  After some conversation, Mr. Reynolds encouraged Tim to apply for an internship.

With a sense of urgency that made the old man proud, Tim put together a resume and cover letter and arranged an interview with Mr. Reynolds for Tuesday.  We had dinner Tuesday night when I was in Boston and Tim let me know that he had not been approved for an internship. Instead, he had been hired for a part time job, working in the lab and assisting with research on the effects of various treatments on spinal cord injuries.  He was required to sign a confidentiality agreement, so I won't be learning too many specifics.

This is a fantastic opportunity for Tim, to say the least. I encourage you to view the company's web site and learn more.  The neat part is that Mr. Reynolds also suffered a SCI, back in 1992 and long story short (it's all on the site) he had a successful rehabilitation. He started this company in 2005, "dedicated to finding solutions through research and strategies to treat and improve the quality of life for those living with SCI." His familiarity with Tim's condition will allow Tim the flexibility to manage this job through the variety of inconveniences that he is faced with from time to time.  Early in his rehabilitation, Tim knew that he wanted to make his life work in this field. This is truly a dream come true for him.

He started work today - Friday, March 26 - and will be working ten hours per week for the time being.  Needless to say, he is very excited. So are we.

Tim Turns 21

On December 9, 2009 Tim turned 21. He was in Boston on the official day, but he returned to the Berkshires on Friday the 11th and joined dad for a beer & wings at Moe's in Lee.

Two years later

Sunday, July 12 - the two year anniversary of Tim's accident. I've pretty much stopped blogging because the world for us is pretty normal - Tim has worked hard to make it that way - and we are mostly dealing with the things that parents of a twenty year old deal with (like last night, when he went out with friends at midnite and didn't come home until 10 this morning). Through incredibly hard work and a strong will, Tim has made the most of his medical care and community support to create a full and interesting life for himself. And, his journey is not yet over.

Technically, still a quadreplegic, Tim very rarely uses a wheelchair now - he gets around with the support of arm crutches and a plastic brace on his lower right leg. He continues to excercise to develop strength, but therapy has been reduced to weekly sessions that focus on flexibility. Medications are still a part of his life.

He's had a great 7 months since my last post. Enrolled full time at Bunker Hill Community College, taking math, science and computer courses, Tim made the Deans List. Tim didn't come home any more often than a college student would, and we kind of got used to that. However, with Jancy and cousin Ingrid graduating and summer kicking in, we have seen him pretty regularly lately.

Toward the end of the semester, he applied for and won a research internship at MIT, working with atomistic modeling of proteins. I can't explain much more than that. :-) However, Dr. Markus Buehler was the recent recipient of a Presidential Early Career award http://web.mit.edu/newsoffice/2009/president-0710.html Here's a picture of him with some of his teammates - grad students and post-docs from all over the world. Dr. Buelher is the young guy with a blue shirt in the middle.

September 1 or so will see another significant change. No longer needing to be near Spaulding, Tim will be moving into an apartment. Two more full time semesters at BHCC and then plans to transfer to one of Boston's great universities. We'll see.

You might want to go back to some of the early postings on the blog. It has been an incredible journey, and we couldn't have done it without the support of family, friends and people we didn't even know. As always, we remain eternally grateful.

In the future, keep up with news of Tim through my facebook page:

http://www.facebook.com/home.php#/profile.php?id=1080063416&ref=profile

Tim is 20 years old today.

Well, Tim has settled into such a solid routine, that this blog seems to be less necessary. I guess it's been over 5 months since I last posted something, so this might be a long one - let's see how long it takes me to get you caught up.

Amy, Jancy, Deleah and I went to Hermit Island for vacation this summer, after missing our vacation in 2007. I can't tell you how emotional that was - we've spent something like 10 or 11 summer vacations there, so every place we went - on and off the island - triggered some sort of memory of Tim growing up. Nevertheless, we had a wonderful time. Meanwhile, Tim enjoyed time at home without us, including a full day at the Zucchini Festival. We stopped in to see him on the way home, did some shopping and enjoyed a nice dinner together at Cheesecake Factory.

College is looking like it will be a part of Tim's future, and sooner rather than later. He started classes at Bunker Hill Community College on September 2 and is going to get A's in Biology and Calculus. Next semester he'll take four courses and he's starting to plan for fall semester, but that is still up in the air. He is also thinking about becoming a tutor, something that was offered at the time he took his application test.

His mobility has improved so much that he has traded in his van and bought - and is driving - a car. He got together with Berkshire buds Matt, Tyler and cousin Sam to do the adaptive work - all he needs is a left foot gas pedal. He gets around Boston with ease, actually doing a nice job of beating Fenway traffic when I went to the game with him and showing me the sites in Charlestown while navigating those narrow streets.

I guess that one of the biggest indicators of Tim's independence was the fact that he went to at least a dozen Sox games this summer and discovered that the accessible seats right behind the Sox bullpen were the best bet. I made it out to one game, but it was a rain out - still a good time.

Tim continues to live at the Marriott Residence Inn in Charlestown. He is comfortable there, making use of the laundry and the pool. The hotel staff has been incredible and has helped Tim develop a social network with the hotel residents and employees, and around the neighborhood. Whenever we visit, we meet some new staff members who tell us how much they enjoy Tim's company. We are grateful for this nice arrangement.

Tim also enjoyed a nice visit from his cousin Ben this summer, and he continues to spend time with Berkshire pals Stefan, Conor, Brigitte, Emily and others. He still drives up to Cambridge once in awhile to see former Spaulding floormate Sara at her rehab facility.

One constant in Tim's life has been the weekly visits from Grandma and Grandpa. They've thoroughly enjoyed seeing his steady progress first hand.

Most recently, Tim had a great Thanksgiving Weekend. He drove down to the Cape on Thursday to join Amy, Jancy and me at my parents house for a nice dinner and then drove home with Jancy that night. We were all pleased as Tim walked into the house and climbed a flight of stairs, leaving his wheelchair in the car. While home in the Berkshires, he spent time with family and friends and followed the same formula - he walked as much as he could, leaving his chair in the car. Returning to Boston on Saturday, he enjoyed Seiji Ozawa's return to Symphony Hall featuring neighbor and friend Peter Serkin performing with the BSO, as a guest of tourism industry friends there. When I followed up with him, he said that he felt so confident with his walking that he was going to make that his preferred mode of getting around, leaving the chair for longer distances.

Tim's attitude has been simply incredible. He keeps pushing himself and has been successful with everything he does. Happy 20th Birthday, Tim - we love you!

Playing catch up

So, the USB cable to download images has been replaced. I will start my catching up with some images of Jancy's return to America from her trip to Ghana. As you may recall, she and Tim had agreed to keep news of Tim's progress quiet, so it was a pretty emotional and happy day at JFK (June 28). So, here goes - a story with no words.

What a difference a year makes.

So much to say, but most of it has been said in the 365 days since Tim's accident. Most importantly, he's emerged as a mature young man on his way to complete independence, one way or another. The physical improvements continue weekly and he keeps taking new steps in creating a life for himself, away from home. This past week Tim visited Bunker Hill Community College to sign up for a class so that he can begin to get back in that swing of things. He's thinking about a part time job and an apartment, too. Sox games are now old hat - the last one attended with Jancy as part of her return grand tour.

Ah, yes - Jancy. She returned from her semester in Ghana on June 28. We took a bunch of video and I was waiting for Tim to edit and post on YouTube - but that hasn't happened yet. It was a great day, very emotional. Amy, Tim and I were joined by Jancy's BFF Deleah and headed to JFK, where we welcomed her back with many hugs, smiles and a few tears. She looks great and had a surprise or two for us. Two weeks later, I'm still trying to get some private time with her to learn more about her experience, but I'm guessing that will be revealed incrementally over time.

Her re-entry into the western world started with satisfying some junk food cravings. Cuzzes Hannah and Caitlyn reserved a table for all of us at a Brooklyn pizzeria for lunch. After some time wandering around Park Slope, we headed home and enjoyed cheeseburgers, fries and shakes on the way at the Red Rooster in Brewster, NY. Sunday evening was spent over dinner with family at the Orient Express in WS for Vietnamese fried rice, Happy Pancake, spring rolls etc. After that, it was off to the races for the girl, re-establishing friendships and getting the lay of the land. She was back to work at the RLI by July 7 and our non-empty nest lives are settling in.

Last night, July 12 - we all celebrated Lou's 60th birthday in Richmond. A great party, and a great way for Tim to catch up with family and community. We're all looking forward to seeing what the next 12 months will bring.

Fathers Day

Yes, I'm well aware that Fathers Day was a week ago. But, like fathers everywhere and throughout history have experienced, other stuff got in the way of my traditional celebration of pretty much doing nothing. So, I'm celebrating today. Started out the day by going to church, where we celebrated the 175th anniversary of our congregation, the first year of our new pastor, and our "Open and Affirming" status. It was a nice service, with folks from our community abnd other churches visiting. As happens regularly, I was reminded of the extensive network of spiritual support and concern that exists for Tim and our family.

Then I took a nap.

Had a snack.

Sat down in front of the computer and posted to the blog.

Fathers Day was not a total wash for me. In fact, there was some big news. Tim drove home on Saturday night to have dinner with me and Amy. I was working that evening, fulfilling my monthly "Manager on Duty" obligation at the Inn. At 8:00 or so, I went down to the dining room to meet them, but saw that only Amy was there. She let me know that Tim was on his way in, via the back entrance. His friend Jess is working in the Dining Room this summer, and I asked her to go say hello to him and bring him to our table. A few minutes later, they appeared - Tim was walking, using his walker. He didn't even bring his wheel chair. What a sight that was. After a great meal, he walked back out the same way he came in. Of course, that was pretty much the last I saw of him - he went out that night, got home way late, after having a good time with old friends, and slept the day away on Sunday (we did get to watch some of the Celtics game together that night). The greatest gift is to see him enjoying the kinds of things that a 19 year-old should be enjoying.

He's had other highlights over the past few weeks, including driving his van to the Fenway and wheeling over to the park to watch a game. He's discovered "new" accessible seats right next to the Sox bullpen, and that's where he likes to sit now. I think that he's been to five games now, sometimes alone and sometimes with a companion. Some of the staff invited Tim to join them at Ironsides pub in Charlestown to watch a game, and he took them up on it. "I didn't have a drink, but now I definitely understand why people like to get together in bars." The secret's out! He's still doing therapy three days a week, and is also taking advantage of a gym at Spaulding to work out on his own.

The other child perked me up on Sunday morning with a call from Ghana. We'll be picking Jancy up next Saturday and can't wait to see her and learn more about her time away. Tim will be joining us for that trip, and then we will go on a strange little journey to satisfy some cravings that have developed in Africa. Pizza lunch in Brooklyn with cousins; red meat, fried food and milk shakes at the Red Rooster in Brewster on the way home; and finishing up with Fried Rice and Happy Pancake at our local Vietnamese restaurant - Orient Express - on Sunday.

That's it for now. I think that I'll go for a walk with the dog - if I can make it past the TV.

Good News (and Tim) Travels Fast

Just got off the phone with Grandma - she always calls on Thursday nights after she and Grandpa visit Tim at Spaulding. She said it was a particularly exciting visit this week and we concur.

Tim decided to come home for the Memorial Day weekend and caught a ride with the Thornes, who were in Boston to see Lily's installation at the Mass College of Art Tower Gallery. After the Thursday night reception they all (yes all - Hannah and Caitlyn, too) went out to dinner at the relatively new TGIFridays somewhere near Brigham Circle and then headed over to the Spotted Pig for some bawdy entertainment. They spent the night in the Hub and headed west the next day.

Amy had "book club" on Friday, so it was Boy's Night In for Tim and me. We decided to watch a movie and Tim wanted to pick it himself AND he decided it was time to use some of the things he'd been working on in rehab in real life applications. So, he walked out to the car with his walker and we drove into town. Then he got out of the car and walked into the West Stockbridge Video Store -up and over the curb and then up two steps. We decided to watch The Golden Compass, the first installment of a fantasy trilogy we had read together many years ago. Then, back to the car (down the stairs was tough, and he needed a bit of help) and home. The movie was OK, we both felt that the imagery in the book was hard to fit onto the screen. But, a nice night all around.

Tim's a bit of a night owl now, so he slept in pretty late Saturday while Amy and I were at work. He made plans to get together with friends that night and headed over to Cale's house with Ilonna. We don't know too much, but he had a great time catching up with a bunch of people. Over the winter, Cale had broken his back, but had not hurt his spinal cord. After many months in an upper body brace, he has healed pretty well.

He got together with Brigitte on Sunday night and they had a nice time together.

On Monday, after the best little Memorial Day Parade and observance around, and after I beat back the grass that had grown high and thick, I took Tim to Monument to practice driving his van. After a few successful turns around the driveways and lots and a pretty smooth parallel park, he deemed himself ready to take his test. That night was yet another evening on the town, and by now I can't really recall with whom, but I think it involved the Yarmos, Russell, Conor and Luke. Hmm, he still knows how to have a good time. I do recall that he brought his walker again and was able to use it in a couple situations.

Tuesday night was early to bed to get good rest for the "big day" in North Adams - his driving test. Long story short, he passed the test, drove back to West Stockbridge, rested up a bit and then drove to Boston that night, with Amy. She spent the night and came home today.

So there you have it - the exciting news that Grandma and Grandpa got today. It's the beginning of the "next era" in Tim's recovery. He'll be able to drive himself home and get himself back and forth to Spaulding.

In Spring, a Young Man's Fancy Turns to ...

.... well, lots of things. The past few days involved baseball and mobility.

This week's big news was the fact that Tim climbed stairs. Yup. Did it sideways - facing the railing and supporting himself that way as he climbed a "Spaulding Flight" right there in the stairwell. Nicely done.

Then on Saturday, he made his first appearance at Fenway, along with his friend Erin. His presence was felt as the Hose thumped the Rays 12-4. How did he get there? Why he took a cab. Not finding one for the return trip, he wheeled himself to the St. Katherine's stop on the Green Line and rode it to North Station, where he then wheeled himself to his room. Sounding pretty strong and independent to me!

Declarations of Independence

"Life, liberty and the pursuit of happiness" Compared to last summer and early fall, Amy and I get the feeling that things with Tim are moving along more slowly now. However, as I gather my thoughts I can see that there is still quite a bit happening in his life and it's all good. One thing that has changed is our time with Tim. He's making a concerted effort to become independent, starting with spending longer periods of time in Boston. He has used taxis and the T to visit friends and take care of some business needs. He is using his iPhone and email to make arrangements for various appointments and medications. One thing he isn't doing is cooking, still relying on the plethora of delivery options in Chahlestown (at 19, that makes sense!). He is quite comfortable with his situation, and the one remaining piece of the puzzle is transportation, his adapted van, and that hit a snag since I last wrote. He was all set to take his driving test, but the instructors would not allow it as the horn didn't work. Very frustrating, and because the dealer is in Hartford, the repair work is difficult to coordinate, but the van is now in the shop and we hope to take care of this last item shortly.

Recreationally, Tim has found couple of new things to keep him busy. After reading that Wii - a wireless video game in three dimensions www.wii.com - was being used for physical therapy and recreation for wheelchair bound folks, Tim decided that would be a good use for the Butters Fund. Tim can work on his arm movement, and have fun at the same time, "playing" tennis and bowling. It's very cool. One day, Amy headed out to Boston with cousin Ben and took both of them to Mt. Sunapee in NH for a day of skiing. Yes. Sunapee is home to the New England Handicap Ski Association http://www.nehsa.org/ and they have a great program. Tim caught on to the special equipment (a sled like device) quickly and enjoyed feeling the wind in his face for the first time in a long time. A bonus was the several hours he got to spend with Ben that day. From a conversation I had with him last night, it seems that he will be attempting to use the hotel pool sometime soon. Of course, the Sox are back in town, and Tim is making plans to get over for a game sometime soon. He says that standing room only tickets are a particularly good value, because he already has a seat!

Socially, Tim has met with Dr. Kantrowitz a couple of times in Pittsfield and has enjoyed reading two books he recommended, written by Nobel Prize winner Gerald Edelman, and focused on the workings of the brain.
http://books.google.com/books?hl=en&q=Gerald+Edelman&sa=X&oi=print&ct=more-books-link&cad=author-navigational
He has also been spending time with his former Spaulding floor mate, Dr. Kim, who is recovering well as an outpatient. Thank God he has developed relationships with people like that. Amy's and my contribution to his cultural and intellectual growth was a trip down the street to see Micah Stone and his band perform at the Card Lake Inn. http://www.micahstone.com/ The website is designed and maintained by Micah's brother, who is also paralyzed, hurting himself the same way Tim did. David was at the show, and Tim spent some time talking with him. Tim also saw his friend Travis there and they were able to catch up. When Amy is in Boston, she will sometimes take Tim up to a rehab facility in Cambridge, where his friend Sarah is living and recovering. Of course, Grandma and Grandpa continue to visit on Thursdays and Uncle John keeps in touch and gets together with Tim regularly. Brigitte visits occasionally as well and back in the Berkshires, friends Matt and Tyler have stopped by.

Therapeutically, there is also good news. Since my last posting, Tim is feeling stronger and has taken his first walks outside, going down the Charles with his walker, a therapist by his side and has stood at the railing to feed the fish. Arm and body strength continue to improve and he can now pull himself up into an "on all fours" position, from laying on his stomach.

And now, drum roll please, Tim has taken another huge leap. On Friday and Saturday, he walked with the aid of crutches - the kind that strap to his forearms. He is pumped! The first day he went 80 feet and then doubled that the next. Spring is in the air - warm weather and long sunny days are ahead. A perfect time to be in Boston. A perfect time to heal.

That Girl!

Jancy's having a great time in Ghana, we're learning in bits and pieces. When she headed over, she told us that she'd like us to "let her be" for awhile, so we're obliging. She's bought a cell phone, which has proven to be a very affordable way for her to keep in touch. Most of her minutes have gone to Tim and he's enjoyed those calls. Between occasional calls home, our Google News Alerts and a great documentary we've developed a pretty good picture of her life in Berekum - near the border with Ivory Coast www.touringghana.com/facts.asp

Ghana is a beautiful place, it's hot, filled with friendly people and it's a third world country. Jancy's family is very friendly and they are fairly well off, with the only TV in the village. Her "mother" is a school teacher and her "father" is a construction technician; she now has four brothers (including Timothy) and sisters. Jancy wears a uniform to school, which she loves and her Berkshires education has prepared her well - she is not required to take math and science because she has already covered the material. She is enjoying economics, history and local cultural studies including drumming and dance lessons. With the time saved by reducing her schedule, she has been volunteering at both the local hospital and at the newly opened orphanage (she attended to grand opening of the new facility).

Living conditions are quite different than here, as you might guess. The power grid is quite unreliable, with frequent outages. In fact, there was a little bit of national embarrassment when the lights went out at a big soccer match that was being held in a new stadium (I learned that through Google News Alerts - I doubt that Jancy or her host family were embarrassed). There is no indoor plumbing and a shower involves a bucket. Food is bought daily and drinking water is purchased as well. Jancy has a bicycle which she uses to get around when going farther than walking distance. She has been putting up with reactions to mosquitoes and high temperatures. It takes time to learn who her "real" friends are, because of the assumption that all Americans are rich - many ask to be taken home with her.

There are other western students living near her - young women from Alaska, Michigan, Denmark and Australia. AFS has organized trips to Accra, the capital, for the Africa Cup of Nations football tournament and the Mole National Park where elephants are a major sight. As I write this post, Jancy is travelling around the country on her own, with a few of these friends. Again, we get just a little info but she is covering it all. They are using the public transportation of buses (called "tro-tros") & staying in affordable, safe hotels. Apparently lots of pictures have been taken, and we are looking forward to seeing them when she returns in late June.

The documentary I mentioned above is called Emmanuel's Gift, recommended to us by Henry Hagenah - http://www.emmanuelsgift.com/ . Sven carries it at West Stockbridge Video. A tremendous story that connects with both of our children, and we'd enjoy hearing your comments.

Bookmark

Life continues to be just a little too busy for the Butterworths. My source of time consumption comes in the way of work. I am currently serving as chairman of the Berkshire Visitors Bureau http://www.berkshires.org/ , the state recognized tourism promotion organization for our region. It's a very interesting and enjoyable volunteer activity for me. However, about a year ago, the president of the BVB retired after 23 years, and I have been overseeing the search and hiring process to replace him. Happily, that has all come to a good conclusion this month as the new leader has taken over and my interaction with the organization will be reduced to a more manageable amount of time.

On the home front, during the winter melt-off, our backyard again turned into a pond, flooding our basement with about four feet of water, and giving us yet another thing to deal with. Incredible assistance from friends and neighbors helped us clean up pretty quickly the day after, and now Amy is dealing with the deeper clean up, reorganization and finding a landscaper to do some reconstruction work. Oh well.

I am writing this morning from Boston, where I am for a short conference. Last night I had a great dinner with Tim and got caught up on several things with him. I have a ton to write about - some really great stuff, and just need to find the time to do it justice. I also have half a posting about Jancy to complete so you can get caught up on the Ghanaian Tourist.

That's if for now, more to come soon, I hope - just wanted you to know that the kids are alright.

Getting out again

This week, Tim's therapy schedule changed to Monday - Thursday from Tuesday - Friday, so our weekend with Tim was a little shorter than usual, but still with enough time to fit in a few things. On Friday night, while I was at work and Amy at her "book club," Peter brought Tim up through the heavy snow for dinner with Sarah and him. Saturday was a quiet night at home with a couple of movies and delicious dinner compliments of Katie and Kathy. On Sunday, Tim had a couple of nice visits. Carolann, Tony and Allott stopped by for a quick hello and to deliver a gift pack of practical, yet fun items, from the Nash's at Blue Q www.blueq.com that put a smile on his face. Aunt Molly stopped by a bit later and shared a nice long conversation, before Amy and Tim headed back to Charlestown.

When Amy got home on Monday, she learned that Tim had headed out on his own for the first time in awhile. He called a cab - a standard cab, not one of the special chair cabs that he's used in the past - and went to the Cambridgeside Galleria where he bought a new pair of shoes and got a haircut. He said that the cabbies were great and happily helped him with his chair. Tim was planning to spend a longer time in Boston before coming home on the 14th, but cousin Lily is having a birthday party on Saturday, so he'll be home again. Looming ahead is Tim's first March 21st driving lesson in the VAN!

Back in the Swing o things

Hey Tim, Glad to see your Dad's back in the swing of things (rrr, I just had to use a baseball analogy). You've made a HUGE transition over the past few months - talk about a NEW Year!! I am glad that after all your hard work, things are settling down for you all. I am sitting here with coffee and sunshine and the hope that we might see you later today. I've got a very thoughtful and funny something for you from the boys (Mitch and Seth) at Blue Q. Lott and lotts of love from your not-so-far-away Auntie in East Stockbridge.

“There are only two seasons -- winter and Baseball.”

That's a quote from Bill Veeck, former owner of the Pale Hose, and a good way to set the stage for this long overdue posting. It's been a long winter, but pitchers and catchers reported a while ago and now the full squads are getting down to business. The Sox are back in the news, the days are getting longer and spring is right around the corner. Hallelujah.

Winter was a little tough for us - after such an intense 4 months with Tim in Spaulding, it's been difficult settling into a new routine. Outpatient life is a little bit slower, and frankly that was a hard adjustment for me and Amy. Tim however, is doing very well with it. Although winter conditions have not allowed him to lead the active life he enjoyed from July through November, he has settled into a quiet life at the hotel. He still gets regular lunch visits on Thursday from Grandma and Grandpa (Tony and Allott tagged along last week). Amy generally drives him out to Boston each Monday and then spends the night with him on the pull out sofa. After hanging around with him for a bit on Tuesdays, she heads home. Fridays are "out and back" to get Tim home for the weekend.

What we've both discovered is how much of our lives we'd pushed aside during the previous four months - at home, at work and in the community. We're still working to get everything back in place and it's been exhausting. Tim keeps plugging along, but at a slower pace. He is showing progress on the Locomat; the left side platform of his walker has been removed, indicating improved balance; his left triceps is showing increased strength; and his right leg brace has been reduced in size.

When Tim is home, we enjoy quiet times together, mostly watching movies and talking. Sometimes he'll tag along with Amy on shopping excursions. He's had a few visitors - Travis, Stefan, Deleah, assorted aunts, uncles, cousins and others have provided some enjoyable times for Tim. We watched the Super Bowl with family at the Williams, Amy has taken him to the new town hall for a look around, as well as a spin around the gym with his walker and the Pattersons have had us over for afternoon tea in East Stockbridge. Last week, Tim and Amy worked together to create a custom brace for his right leg, using a bunch of elasticized braces, Velcro and other materials - a successful project that gave Tim added flection on his right side, helping him to pick up his right foot and move it forward.

"The Van" has been retrofitted (after a few road trips to Hartford for Amy and me) and Tim is now in the process of setting up driving lessons which will lead to a special license and eventually a new level of independence. He is getting more thoughtful about possible college options, but one day at a time .....

Thanks to everyone who has pestered me to get back in a routine with the blog - I'll try to keep it current. We're all happy that so many of you want to keep up with Tim's progress. Soon, I'll get something up here about Jancy. For now, just a couple of hints about her experience - "no modern plumbing."

Until next time .......

And then there were three ..... sort of .... for awhile

The next new phase of our lives started today - Jancy has left the building. After several hectic days saying goodbye, we headed out for JFK this morning. Jancy drove - her last time until June 29 - half way, following one of my favorite routes along 41 all the way down through Egremont, Sheffield, Salisbury, Sharon and Amenia until we reached Route 22. A few clicks along that road and we stopped for lunch and a change of drivers at The Red Rooster in Brewster, a family favorite. The sights along the way will help her remember well what a beautiful part of the world she (we) lives in, while she explores a new culture. We all felt odd that Tim wasn't with us, but he and Jancy enjoyed a long day together Monday, with Jancy spending the night with him in Boston. The drop off at a non-descript airport hotel at JFK was a bit anti-climactic - the f0lks at AFS won't get started with the process until mom & dad beat it. So a few pictures (which will appear later) some hugs and tears, and we were headed back north on the Van Wyck. Jancy spends the night there and actually departs Thursday evening.

It has been another rather long week for Tim, but he's now back in Boston for regular therapy four days a week. We all hope that getting back in a routine will bring his energy level up. Meanwhile, tests are being run to continue the diagnosis. After a scary episode on Saturday night that involved a late night trip to the emergency room, an MRI was on today's schedule.

A few highlights over the last few days included our last family night together on Sunday. After a nice meal at home, we headed down to GB to see Juno at the Triplex and all enjoyed that. A bonus was running into Conor, Ethan, Zack and Joel. Tim's face lit up and he had a nice time catching up. On Friday, the Thornes had us up for dinner - Hannah, Caitlyn and Dan were home. Tim and Caitlyn share a birthday and she had missed Christmas, so getting together was great. On Monday, as T, J, & A left town, they swung by the Inn to say goodbye to good ol' me. Tim asked us to gather in a bit of a circle and hold hands as it would be the last time we would all be together until Jancy's return. Then he led us in a football style cheer as we went our ways.

Yup, it's going to be a new life for awhile.

We're still here .........

Goodness. First, let me thank Tim & Andres and Nancy & Lincoln for putting something out on the blog so that the poor site didn't feel totally neglected! Anyway, we're back and hope to be in the swing of things on a regular basis in 2008.

Tim has been an outpatient now since November 21. It's a different life, requiring adjustments for both Tim and the family. When he was at Spaulding, we all knew where Tim would be, when he would be there and what his schedule would be. Now, things are very different from day to day. Where we once had a routine, we now need to be flexible in how and when we provide support, and Tim needs to be creative in how he spends his time. For me, frankly, the last couple of weeks have been a bit out of control - year end work projects, Christmas and New Years events, stuff that needs to be done around the house have all added up to a very difficult-to-manage period of time. I look around our home and my desk at work (ha!) and I can see that little by little, many things have fallen by the wayside. Nothing urgently important, though and we'll get caught up eventually.

So, here are some bits and pieces, in no particular order.

By and large it was a very nice Christmas season. Christmas Eve was a joy as always at Molly & Lou's in Richmond. Things were a little more quiet than usual as some family members elected for a tropical celebration and a couple of the youngsters made serious trips to be with their significant others' families for Christmas. But the extended Kapteyn family, being who we are, managed to fill the house with good cheer and food and wine. Tim, Jancy, Amy & I enjoyed a nice Christmas morning together.My sister Carolann, along with husband Tony and son Allott have settled down (to some extent) in East Stockbridge, so we were able to have the entire family together for the holiday. Carolann hosted the West Stockbridge Butterworths, Grandma & Grandpa and Uncle Dan for a very nice Christmas Day dinner. The next day, my brother Bob drove up from Virginia with children Mike and Emma, while brother John and partner JP came out from Boston. Grandma & Grampa treated all of us to a collective birthday dinner at The Red Lion Inn http://www.redlioninn.com/ on the 26th honoring Amy, Tim, Grandma, Emma, Allott and yours truly for birthdays that fell between November 22 and early January. A good time was had by all! New Years Eve at Martha's was a wonderful gathering of dear friends. Amy and I are both happy that we were able to enjoy these times together with family and friends with minimal preparation!

A couple of practical things happened along the road to Tim's independence. First, his new wheelchair arrived, so he was able to return the loaner to Spaulding. Second, he had his first driving lesson and it was determined that he will be able to drive with a simple adaptation of adding a left foot gas pedal. As soon as the van is properly equipped, he'll take a few lessons in that vehicle and be eligible to get a license.

Tim's spirits have been up and down over the last couple of weeks. Of most significance is that he is feeling a bit poorly, and the docs can't seem to pin down why. It might be a change in medications or some other reason, but they're working on it. Unfortunately, whatever it is causes him to feel less strong, and unable to do some of the home therapy work that he had anticipated. Visits with or from friends and family pick up his spirits. Aside from the Christmas events, he went to see Juno with Brigitte at the Triplex and had a visit at our home from WS pal Travis. The reality of switching from a resident patient to an outpatient is another source of unpredictability - his irregular therapy schedule over the two week holiday period and the difficulty in getting around Boston in a wheelchair at this time of year are two things that are very different. Appointments have been sporadic and Tim went from 4 days a week to one or two or none! That will get back on track January 8. For the most part, though, Tim is enjoying his independence and is happy to be off the hospital floor. These uncertainties are just another set of challenges for him to confront, and he'll figure out how best to deal.

For the first time, we sent out our Christmas card with a bit of a newsletter, in order to let some more folks know what had gone on in our lives this year. The result was a pleasant number of emails from old friends that we don't get to see too often and a bit of a surge in blog visitors.

Our living situation is in flux, big time. Amy packed up the rest of our belongings from Nancy's Willow Street apartment as we'll only be spending an occasional overnight in Boston now. I don't know how we would have dealt with this situation without that place to stay. On the home front, Dom Lucchi's crew continues the work on making our bathrooms accessible along with a few other odds and ends. It's been a difficult job due to the age of our house (1840 or so) and a desire to allow us uninterrupted access to bathroom neccessities, but they've been a pleasure to work with, and things are looking good. Anyone who has ever lived through a renovation of any kind knows how throw everything can be thrown a bit off - nothing is where you think it is, and stuff moves around the house from day to day. It's definitely hard to keep a routine (for those who know me, you can imagine what kind of a mood that puts me in). I think we're in the home stretch now and looking forward to getting things back together.

Finally, we are working to get Jancy out the door and on to Ghana - coordinating last minute shopping and preparations, as well as various good-byes. On January 9, Amy and I will drive her down to JFK and leave her at a hotel for orientation and preparation for her departure on the 10th, which we are not allowed to observe. :-(

So, that's it from One Stockbridge Road. From the beautiful, snowy Berkshires, best wishes to all for a pleasant, healthy and prosperous year in 2008.

All is still, all is bright...

Wishing the Butterworth family a still and bright holiday season and a fine 2008!
from Nancy & Lincoln

Merry Christmas

Tim,

     We wanted to drop you a note and let you know how inspiring it has been to watch your recovery.  You've really worked hard, and we wish you lots of luck and determination as you move forward.

Have a great Christmas, and best of luck, health and happiness in the New Year.

Tim & Andres

The outpatient comes in from the cold

We're enjoying a nice evening in front of Oceans Thirteen with a couple of VO pizzas. Amy made the trek to Boston today to pick Tim up and bring him home for a long weekend. Before returning they did some Christmas shopping at the Galleria Cambridge Side, at Tim's request. It's been a long week with minimum communication between us, but I'm sure we'll get caught up tomorrow and I can make a progress report later this weekend..

I had a lot of opportunities to be out and about in the community this week, and was continuously amazed by how many people asked "how's Tim?" I'll never get tired of answering that question and am humbled by how many people are keeping tabs on Tim and his progress and praying and rooting for his recovery. Following is one great example.

On Tuesday, I had some of our neighbors from the National Shrine of Divine Mercy http://www.marian.org/ join me for a Christmas season lunch at the Inn. It was a business lunch, to thank them for their contribution to the unique character of Stockbridge and, of course, in appreciation of the visitors - "pilgrims" - they draw to town. Carol, Fr. Michael and Fr. Victor showed up, and during the meal presented me with two gifts for Tim - an olive wood "comfort cross" and a copper magnetic bracelet, both blessed by Fr. Victor - and the news that they, and many others in a world wide prayer chain, had been praying for Tim since hearing about the accident this summer. Tonight, Tim opened both gifts, putting on the bracelet and declaring that he liked the feel of the cross, clearly appreciative of the thought. Also in the mail bag from this week were nice cards from the O'Malleys and Aunt Merrilyn, both of whom have been steady communicators, with just the right words.

These types of gestures and stories come to us in many forms and from people with a variety of beliefs and faith backgrounds, and I can't help but feel that we've ended up in the middle of something quite powerful - a community of people around the world pulling in unison for one young man, whom most have never met. I am energized by it, and although it might sound hokey, I guess I'm having one of those experiences where my faith in humanity is fortified. I hope that you all can feel that, too.

hey tim!! i know we just talked but i haven't looked at your site in awhile and i wanted to see what was up..your hotel looks sick. it was so good seeing you at katie's party and talking to you so candidly and openly about everything. you are so positive and strong, etc., and that is so good to see. anyway i can't wait to come home and i hope to see you at some point...remember when you picked me up when you got your permit? why did that not surprise me, hahah. anyway have you seen into the wild? if not DONT GO SEE IT wait till i get home because i want to see it again. alright more studying to do ... but see you soon!

jess

Happy 19th!

As I watch the Pats dismantle another otherwise worthy opponent, I'll get you all caught up on what's been going on with not-as-young-as-yesterday Tim. He's on the way back to Boston with Amy after quietly celebrating his 19th birthday with us here in the Berkshires.

I met Tim on Thursday night as he was sitting down for a late dinner, munching on a Chicken Caesar Wrap. His day had included a short lunchtime visit from Grandma and Grandpa in between his therapy sessions and a late afternoon nap! He seems to be very comfortable in his surroundings on Tudor Wharf. For three days, he had been managing quite well on his own. "Managing" away from the hospital staff and family means making sure he takes his medications on time (a complicated schedule involving 6 or 7 meds to be taken half a dozen times each day), getting himself ready for the Spaulding van, being responsible for his personal hygiene (including taking showers on his own - transferring to a bench for that purpose) and meals. Beyond that, he is scheduling his outpatient therapy sessions into January, tracking his wheelchair shipment and making plans to take driving lessons. A personal FES unit is part of his home-therapy program, and he uses it to stimulate muscle activity in his triceps.

He has a goal in mind - he wants to be able to walk around the house, with a walker, when he comes home for Christmas. That means that his therapists need to give him permission to walk independently - without a "spotter" walking alongside. I don't see any reason why that won't happen as Tim has been setting and meeting goals since July 13th. We're looking forward to it.

I joined him for breakfast on Friday and then picked him up at the end of the day for a ride home. I learned that he sleeps a lot, as his therapy sessions still tire him out. He's enjoying the pace of his life right now, reading and watching shows that he finds on Discovery and the Science channels (not to mention Comedy Central). I think he's also looking forward to the end of finals, so that he can spend some time with his hard working college friends in Boston. We had a pleasant ride down the Pike, just talking. Amy had delicious pulled pork sandwiches waiting upon our arrival. Tim thanked her by standing up with his walker and taking a lap around the first floor - a beautiful thing.

It was a pretty uneventful weekend, lots of simply "hanging around" while Amy, Jancy and I went about our jobs, chores, etc. On Saturday night, we invited the Berkshire's newest residents - Aunt Carolann and cousin Allott - to join us for a birthday dinner celebration at Koi. Few will be surprised to learn that Tim ordered and enjoyed boneless spare ribs and General Tso's chicken!

We're feeling comfortable enough to leave Tim home alone for short periods of time (please note I said "we" - Tim has no problem with it) and we all seem to be settling in to an easy home life. His departure today was delayed a bit by a surprise visit from cousin Sam, who was home for Christmas from UTI in Sacramento. He brought along John and Tim and a good time was had by all.

Out of the loop?

Life has a way of filling up days, doesn't it? We had a nice family getaway to our favorite destination - Boston - this week. Amy and I attended a milestone birthday celebration for long time friend, regular blogger and physical therapist PattyO. It was a lovely evening, that left us a bit, errr, tired on Sunday morning. Tim and Jancy enjoyed a nice evening dining at the hotel and then taking advantage of the superior cable TV lineup offered there.

We headed home ahead of the storm that never fully materialized, BUT it has been steady snow ever since and we are in winter wonderland. Work continues on the interior of the house and life is a bit off kilter - everything is a little out of sync. Those of you who drive by the house will notice Tim's new wheels parked in the drive - they're hard to miss. After some lessons in Boston on the use of hand controls, he'll get a special drivers license and will take a huge step towards further independence. The Dodge van is large - designed to accommodate a wheel chair while Tim drives and to house a mechanical lift for access. Waiting to see it in action.

Business brings me to Boston for a Friday morning meeting, and I hope to spend some time with Tim and hopefully bring him home for the weekend and a possible birthday celebration (19 on 12/9).

As to what's going on out in the Hub, I can't really say - no news from Tim since he headed back on Tuesday!

Survivor: Charlestown

Well, Tim's first shot as an outpatient has ended successfully and next week, he'll put in a full-time schedule. Yesterday he worked on sitting balance and arm/hand strength and agility.

Grandpa came up for a visit and they had lunch together at Half Time.

Amy came in to town and picked him up. On the way, they did some shopping for bathroom fixtures and furniture to suit his abilities. While on that mission, Tim showed Amy how he can ride an escalator, a very harrowing experience for Amy.

Going Mobile

Had a few quick conversations with Tim yesterday. Tuesday's therapy was fine, Spaulding van service worked well. He's beginning to use the power chair a little more - weather and distance are affecting that decision. Dinners at the hotel are nice, and the fireplace provides a pleasant spot to sit and watch TV - last night the CNN / YouTube debate (that was happening down here in St. Pete). Says he wants to be an informed voter in 2008.

Tim hit the road independently, riding the T to visit Ray, a former Spaulding floor mate, who is currently at another hospital in town. Later, he wheeled up to Cambridge (with a travelling companion) to visit Sarah at her rehab facility - two former 9th floor pals, both doing outpatient work.

Grandma and Grandpa for lunch today and Amy picking him up for a short visit home. So, that's that for now.

Limbo Land

Not all business travel is bad. After 11 hours of airport terminals, planes and a shuttle I arrived yesterday in St. Pete Beach, FL for a conference. I'll be in climate controlled rooms all day, but I must admit it was nice to have a cold beer outside last night when I arrived and to start my day with a walk on the beach today.

It's hard enough keeping up with Tim when I'm home, but now I feel doubly removed. On the home front, work continues on the bathroom renovations and we are living among re-located possessions and plastic sheeting to protect against dust. Word has arrived that Tim's vehicle should be arriving soon - driving lessons and a special license to follow.

Yesterday was Tim's first on his own, with one PT session at Spaulding. Next week, his therapy schedule will ramp up. Today he has a day off, and I believe he'll be spending it with a friend. I'll report it as I find out!

Moving Day

Tim is settled in to his one bedroom accessible efficiency, complete with a queen sized bed, a pull out sofa, kitchenette and view of the harbor. Jancy spent Sunday night with Tim and on Monday everyone had breakfast at the hotel's buffet. A day of shopping followed - for Christmas at the Galleria Cambridgeside and later at Ikea for bathroom fixtures. Here's a look at Tim's new digs.

Just as Tim was getting settled in, Jancy got the news she's been waiting for - AFS left a message letting her know that they had settled on a Ghanain host family, so she's good to go to Africa in January. Things are moving fast around here!

Another fine day in a great community

Tim has completed his first four days as an outpatient, and they were a collective success. After doing the family thing for the first two days, he hung out with friends on Saturday. The "Fun Raiser," organized by Henry Baldwin was absolutely wonderful for all of us. We've been laying kind of low for the last four months, and this was a great opportunity for Amy and me to catch up with many of our friends. Tim and Jancy had a great time hanging with Monument grads and current students enjoying the end of the long weekend, as well as the adults in the community that have been such an important part of their lives.

I reserve the right to amend this post, because Henry needs to get me a full list of the folks who helped to put this all together and bolster the "Butters Fund." Here are a few things I know, and please forgive any omissions. Pam, Ron and Nick greeted us when we arrived and said goodbye as we left, and they weren't just hanging out. Of course, Lisa claimed that Henry did all the work, but I'm guessing she did a few things to assist. The images that follow, by the way, are courtesy of Lisa. Lakota Barbecue - Amy and I were just in Kansas City, and Mark's ribs and chicken were better than what we enjoyed in that capital of BBQ - hire him for your next event. Joe and his staff had everything running smoothly at the (East) Stockbridge Sportsmen's Club.

Tim had an absolutely great time, we could see it in his eyes and smile. He has been waiting to be out of the hospital and get back to living the life of a 19 year old. We're grateful to all of our friends and neighbors who came out to welcome him back to the "real world." For those who stuck around 'til late, Tim broke out his walker and gave a demonstration of his current abilities (camera was already packed away). Things are looking up.

After the community gig, Tim went to his first party since July (yesterday's outing never materialized after I posted his plans). Brigitte picked up T & J and took them over to the Yarmos, where he had another great time (and that's all I know).

After sleeping in today, Tim headed off to his new studio apartment near Spaulding. Amy and Jancy took him out to Boston, and they'll help him get settled in - shopping for some groceries and other things, tying up some loose ends. As of Monday afternoon, Tim will be on his own - responsible for making (or otherwise procuring) meals, taking his medications on schedule and getting to his outpatient therapy sessions on time. He'll also be managing his free time and finances, and I think he's really looking forward to it.

So, enjoy these images from last night (sorry I couldn't use all of them), and look forward to reports on the next phase of Tim's recovery.