On Oct. 15th I attended the NAMI-MA Convention. Its an annual event they hold in an effort to keep the public informed about mental health issues. Our team ‘Walking for Cailean Walker’ was named the ‘Team of 2005′ and I was given the ‘Captain of 2005′ award. Both last year’s and this year’s walk organizers were touched by our team’s story and all the support.

NAMI has announced the date for the 2006 walk and I have started our team page for those who would like to sign up. I’ll pass on more details as the date gets closer.

WALK DETAILS:

Walk site: NAMI Massachusetts
Location: Artisani Park, Brighton (Boston)
Boston, MA
Date: 5/6/06
Check in: 9:00 am
Start time: 11:00 am
Team: Walking for Cailean Walker
NAMI Affiliate: NAMI Massachusetts

www.nami.org/namiwalks06/MAS/caileanwalker

Thanks again to all the walkers and donators who helped make this year’s walk special for all of us.

Maureen, Brittany and I just spent 5 plus days in Austin, Texas for a music filled vacation. Cailean fortunately went to Austin with us 3 times when he was younger. It’s impossible to attend something like the Austin City Limits Music Festival and not be confronted with his memory in innumerable ways. The roster of “festival acts” read like a random list of his favorite bands: The Allman Brothers, Coldplay, Oasis, Widespread Panic, Blues Traveler and Mike Doughty. He would have been in his glory getting to see all these musicians in one place.

There were many other things that triggered thoughts of him. As we drove past the former store for the Strait Music Company, I remembered that he went there several times to hang out in their guitar room while trying out as many instruments as possible. That is also the store where I bought his fancy mandolin several years ago. I also remenbered him at the Waterloo Ice House where he had ordered hamburgers while we looked at the cds which we had bought next door at Waterloo Records. He loved the Ice House because the walls of the bathroom were covered with baseball cards. When we drove north on Brazos I remembered the many nights we spent at the Northgate Suites Hotel where he had his own room and his own tv remote. Across the parking lot was a mall which had another guitar store where he went by himself practically dominating the practice room. And there was a large sporting goods store where he and I would shoot hoops or practice putt as we easily outdid Bob Stone and David Leff. And he could hang out with those cute and mischievious Stone girls at the pool.

We also went to the Broken Spoke where he had been several times. One year when he was around 7 years old, I wondered where he was – and then found him playing pool with 3 adults in the back room. When we drove to the Oasis on Lake Travis, I remembered the time that Cailean and I got out of the car in order to kick at the anthills which were full of dangerous fire ants. When we drove by the Driskill Hotel, I saw the back alley where he and his dad both took a furtive leak one night at the same time – I guess we both had to go. Down the street is the old Ritz Theatre. One night he was there reading a book while the rest of us watched the Dead Reckoning band give a show. He turned to me and said he had to go to the bathroom. I said ok and pointed to where the men’s room was. He then said ” DAD, PLEASE PUT YOUR FINGER ON THAT WORD UNTIL I COME BACK.” He then came back and began to read again from that word forward.

Ultimately, the appeal of Austin is that of life itself: amazing music and restaurants and great things to do with friends and family. The cruel unfairness of his not being the centerpiece of those five days is unending for he will always was and will be my one and only “Austin Texas Buddy.” How I wish I could put my finger on that word one more time. Thanks Cailean for giving your dad so many wonderful and enduring memories. You would haved loved seeing the Calvin Russell band at the Ice House at 2 in the morning. It was amazing.

Dear Brittany and Mariel,

For every time I have sat down to contact you, and been unable to find the words and given up, I have gone to bed that same night and dreamt of Cailean. I have had dreams where I laugh with him, dreams where I feel all of us right back where we left off. Then there have been dreams where I cry. One, so sad I could feel the dampness of my pillow when I woke. However, in that dream, Cailean was not the one who was sad. He was the one calming all of us. He was the one who was telling everyone around him not to be upset, just simply that he had to go now, that it was time. Over and over again, his voice so reassuring, and yet, I still cried so hard.

Girls, I am so sorry for your loss, and for the loss of so many people in the world who will never get to experience how remarkable Cailean was. And it is unbearable to me, that I was not able to hug each of you and tell you just how sorry I am. That I could not offer condolences in person or relive the wonderful memories I have of Cailean and all of you. I still cannot find the words to say to any of you. To start from the beginning, there is so much…

I always expect to bump into one of you somewhere. When I pass your parent?s house, or drive to the post office or even at the train stations. And every time I am in Boston, I wonder if you are still there and what the chances are of seeing you. Slim to none, I know – which is why I feel so lucky to have gotten a chance to see K all grown up. We bumped into each other early one morning, early-like 4 or 5 AM- in West Point buying tickets for Dave Matthews. It was the winter of 2003. He called my name and it was so odd that I recognized him right away, he looked exactly how I would have imagined. All I could say to him, was ?Oh my god, I cannot believe how tall you are!? He had grown up so much, and I am so glad I got to see how cute and handsome he turned out. Just like we imagined when he was a kid. I only wish I had more time that day to talk, to say so much more to him. I know how rare these meetings are, they almost never happen. Which could explain why I have not seen either of you in forever.

To go through the web site, has brought back so many memories. Those photos made me think of all the nights Cailean stayed home with us and would follow us around until all hours of the night telling us the “best” and “funniest” stories and jokes he could think of. And then he would curl up with Brittany on the pull out couch in the TV room and fall asleep. Even as a kid, he knew how to make people feel good, and smile. And I would feel so special every time he wanted to show me his newest artwork from school or the new favorite toy he would run to get in his bedroom. Even when everyone got older, and we started thinking that at 16, 17, 18, we were adults – he was still there playing with the big kids. And there was hardly a time, when I would pull into the Garrison driveway, where he would not be out there, playing with Susie, or dragging some long stick around knocking the bushes and looking to see what might be hiding in the grass or the leaves and brush. I can still hear your dad calling from the front steps, into the yard… ?BUDDAAAYYY? ?KAAAY KAAAY?. And then, out of no where, he would just pop up. With that smile glued onto his face. When he was a kid, we would always wonder, ?Where did he go?? He had a knack for disappearing and then coming back with that mischievous look. And I can still see him smiling. And I am sure you know he is there, all around you in everything you do. Only now sometimes he may be the one trying to get your attention. And you?ll know. Little things will happen and you?ll acknowledge them as Cailean just checking in and saying hello. I honestly believe that.

He was truly one of the most interesting, brilliant and beautiful kids I have ever met. I wish I had the chance to get to know him as a young man. I am glad I now have the maturity to remember him as an amazing kid. There is no doubt in my mind that he grew up to be as caring and sweet and funny as both of you, having taken so much guidance from you as big sisters. From the web site, I can tell he did right by so many people and touched so many lives while he was here on this earth.

I hope to hear from you, see you one day, be able to talk over a cup of coffee like we used to, an email or a chance to visit when we are in the same town sometime. I would really love that. But mostly, I hope you know I am here for you still. I am thinking of you both, your Mom and Dad, and Cailean…knowing that he is somewhere safe and warm and being comforted by those who went before him. My heart is so full of love for all of you, if there is ever anything I can do, know that I am always here.

My Heart,

Marlene

I’ve been working on family relationships with him so he knows that Cailean is my brother but we went over the fact that he is Dexter’s Uncle. That night I was folding Dexter’s laundry and trying to get him ready for bed. In the pile was the NAMI tshirt that we had given to everyone who participtated in the walk in May(including an extra small one for Dexter) He loves it and always gets excited when he sees it. “Oh wow mom, can I wear my Uncle KK shirt to bed? Remember when everyone where’s KK shirt and walked. That was great.”

Its a difficult thing to try and explain to a child, especially one that’s only 3 years old, where this person who was and remains to be part of their life has gone. I often find myself associating the littlest thing with Cailean and cherishing it so much. I guess Dexter has done the same thing with the NAMI walk t-shirt. Its nice to know that even though Cailean is gone, memories are being created to help Dexter remember his Uncle KK.

So in my efforts to keep up to date on the lyme disease front I came across this article about a guitarist in nj. His last name is Walker and hearing about his passion for guitar, his love for Dave Matthews, and his struggle with lyme disease reminds me of Cailean…
link

Here’s an article that talks more about neuropsychiatric lyme disease. My mother spoke with the reporter and they talk about Cailean in the article.

http://www.orlandosentinel.com/sports/orl-sptfsu13071305jul13,0,6280987.story?coll=orl-sports-headlines

http://sportsillustrated.cnn.com/2005/football/ncaa/wires/07/09/2060.ap.fbc.florida.st.sexton.1st.ld.writethru.0582/

Here’s the link to a news story about Football player Wyatt Sexton who has been diagnosed with Lyme Disease.

As Cailean’s 19th birthday came and went this week, the effects of his absence were enormous. The tragedy of his disease and consequent death is found everywhere we go and in everything we do. I have always enjoyed observing children just to watch the endlessly wonderful or wacky or wonderfully wacky things they do as a matter of course. Now, my observations have a secondary function because there is always the possibility that I will see a kid who looks like Cailean or who does or says something that he did previously such as blowing a drink straw wrapper at my nose whenever we went to a restaurant.
The disappearance and subsequent rescue this week of the eleven year old boy named Brennan Hawkins in Utah this week were extremely touching and important to me because Brennan’s looks and smile and lack of hard edges were very reminiscent of Cailean.
During Cailean’s last months, he spent many days and hours at Outward Bound’s national headquarters and its nature preserve which adjoin the Hudson River. Often he would take his guitar or just explore or hang out. We would often worry if he was ok but were reconciled to the fact that a 17 old boy that is too ill to go to school or be with his friends must be allowed to do something in return. An entry in one of Cailean’s journals suggests that he had met a girl who was probably staying at the preserve as a summer intern which would make her his last frienship. Each night on the way home from work my train rides past these woods and rocks and waterlands. Every time I look out the window hoping to spot him, hoping beyond all belief that he will see me and wave and then smile as only he could do. I will keep looking out that window for a long time.
It is a small but still wonderful consolation that Brennan Hawkins smile and persona will serve as a partial testiment to Cailean’s lasting memory. Happy 19th birthday Buddy- love Dad.

Today’s Cailean’s 19th birthday. Dexter is really into birthdays lately. He talks about his 3rd one coming up and he loves to sing the birthday song to anyone. I can just imagine the smile on Cailean’s face if he heard Dex sing to him today, he would have loved it.

Dex is pretty young and only got to know Cailean for too short of a time, but he remembers him like he saw and played with him yesterday. He’ll see his picture and say, ” I love KK. I dunno where he is Mom. Maybe we gonna have to find him sometime. ”

Happy Birthday K, we’re always thinking about you…

Yesterday, a group 27 strong plus one with a broken foot cooking at home participated in NAMI Walks for the Minds of America. Our team Walking for Cailean Walker raised over $2400 in donations. I have a bunch of more pics and people that I’d like to thank and will put up here this week, but I figured I’d get the group photo up here now.

I can?t beleive its already been 1 year. Where has the time gone? It seems like the other day we were still hanging out, listening to you play the guitar at the highlands country club. Not a single day or minute goes by without you in my head and heart. We miss your smile and the way you would make us all laugh. You are always a great freind, we love you and miss you

Thoughts of Cailean weigh heavy on all of our heads today. I think about the person he was and could have become. I watched him grow up for almost 18 years and he never ceased to amaze me. Even in his death I continue to be amazed by the impact he has. I cherish every moment I had with him from the days when he was just a baby to hold and love, to a toddler that would beg me to sleep in his room every night, to a friend to go outside and play with, to a musician that loved to perform,, to a brother that I could talk to all night and lean on, to an uncle with so much love in his heart. He was my baby brother and I always tried to help him grow up because he was younger and I was the bigger sister, but it worked both ways. He helped me become who I am today and he will always be a part of me and everyone else’s lives he touched. He was a smile and still is even when the tears are falling down my face.

This is our very sad anniversary. In a way, it seems like I just saw Cailean last week and sometimes it feels like so many years. Nevertheless, I feel that he is still always with me. Thanks to Brittany, I will wear his birthstone every day for the rest of my life. Thanks to Mariel and Matt, I visit this website almost daily. Thanks to John, I constantly see the image and potential of his son. Finally, thanks to Dexter, I see the hope for a better future. To those of you who come to this site to read or write about Cailean, please know that what Cailean meant to you, you also meant to him. He had a real appreciation and love for family and friends. Thank you for being part of his life.

There is one incident from the past year that gives me comfort and assures me that Cailean is still with and watching over us. It goes back to last October when John and I were driving down to Pennsylvania to visit some good friends. Brittany called us to relate an unusual event- she and Pam were in the kitchen of their apartment when all of a sudden the stereo went on in their living room. Lo and behold, “Yellow”, a Coldplay song came on. This was the song that always reminded Brittany of her brother. I told her that it was a sign from Cailean. A few days later I related this story to a very good friend while we were on a walk, adding that I wished that Cailean would also send me a sign. ( To regress, I must now also add that last June some of my very good friends from college gave us a birdbath with a beautiful floral planter in honor of Cailean’ s memory. We eventually placed this in front of Cailean’s bedroom window with plans to place seasonal plants etc. on it.) In September I set a small pumpkin and some purple mums on it. When I returned from our walk that day I noticed that the pumpkin was gone – and no sign of it remained anywhere. Somehow I have to believe that Cailean heard my plea and responded. It comes full circle – “Yellow” is about stars- Mariel purchased a star for Cailean this past Christmas and “Yellow ” was the song dedicated to Cailean during the Heart and Soul Talent Show in April.

Thank you all for helping us get through this past year. You will never know how much your prayers, kind thoughts, concern, hugs, smiles etc. meant to us. I think Cailean (whom we miss more and more each day) would join us in these thoughts. Love, Maureen

Thursday May 12 will mark the first anniversary of Cailean’s death. I wanted to share a few things concerning him that hopefully illustrate why he was such a special person.

Several years ago, Brittany used to rent an apartment in West Newton, Massachusetts. We stayed there overnight many times. The house was situated on a very unusual street near a public park and many if not all of the residents were Sicilian/ Italian immigrants. The street was suburban in setting but was more like something from Little Italy 75 years ago. There were chickens walking around on their own and every house seemingly had serious vegetable gardens in back. Everybody paid very close attention from their windows to any outsiders who came and went, including us. One time there was a large party in the backyard of Brittany’s house with many local friends and relatives as we got out of our car. Cailean had on his beloved Celtic jersey. We started walking to the stairwell up to the apartment. Several teenagers were there. Cailean walked over and gave a serious handshake/hello to the closest one with a big smile on his face. He said “hey, how’s it going.” Without introduction or provocation, he had made a new friend in Boston. He was probably 15 years old.

Over the last few years, many people have asked me whether I played an instrument or wrote songs because of my devotion to music. I often said that Cailean was my music maker given his talent and dedication to the guitar and songwriting. One of the many painful aspects of his passing is the unfinished business regarding his musical aspirations. I think he would have been a gifted songwriter because he seemed to have a natural way of devising his lyrics which was economical and devoid of pretense. I remember when he got his first guitar and the many lessons and his joy and public acclaim when he played 2 songs at his 8th grade graduation. Several years before the guitar, he got a small drumset. He played it endlessly, including one time when he even played a song on our dog Susie’s head. She seemed to like it. I remember another time when I had just bought 2 Beatle albums which had never been on cd before. Maureen and I were listening in the kitchen on my brand new stereo. Ringo was playing drums on a particular song but it was unlike my memories from the vinyl album many years before. At first I thought the stereo or the cd was broken or flawed. Then I found him in the tv room practicing on his drumkit and overshadowing my friend Ringo.
Later, Cailean would get several acoustic and electric guitars and a serious electric keyboard and a mandalin and harmonica. All are now silent. His room is filled with hundreds of his cds and his musical posters and numerous books about the guitar, etc. He was fortunate to have attended many many concerts both with and without his parents and sisters. He wrote dozens of songs and poems and recorded about 9 cds worth of material, some of which he compiled on his own cd which he hoped could be marketed to a record company. Two years ago, I told him that I was going to ask John Inmon if he would give Cailean a week of guitar lessons in Austin Texas. John is one of my heroes and was a member of the legendary Lost Gonzo Band which backed Jerry Jeff Walker and then later Ray Wylie Hubbard. John is a very sweet guy and a great guitarist to boot. Cailean thought I was kidding but I meant every word of my promise. After all, shouldn’t a Lost Gonzo be the one to give guitar lessons to a wonderful kid from New York whose middle name Walker was chosen in honor of Jerry Jeff ? Besides, John had lost his own son Kenny and I think he and Cailean would have been great together

I also remember a weekday morning when Cailean was about 8 or 9 years old. I was walking out to door to go to work. He ran up and excitedly said that he was going to the Dutchess County Fair and he needed $10. for the trip. I reached in my pockets for the money. He then said not to worry because if I didnt have a ten dollar bill- he would take a twenty- with the biggest smile possible. He didn’t know that I would have given everything I owned then or now to see that smile again. Thanks for blessing our lives Cailean Walker. love, Dad.

Hi Everyone,

Its hard to believe that a year has already past, but May 12th will mark one
year since my brother Cailean ended his life after struggling with
neurological problems. Earlier this month friends and family helped to
raise over $2500 for Neurological Lyme Disease research.

I’ve been trying to figure out something special that I could do during the
week of May 12th. Partners Healthcare, my employer, is a sponser of the
NAMI Walks for the Mind of America on May 14th in Brighton,MA. They raise
money for mental health awareness and research.

I have started a team called “Walking for Cailean Walker” and welcome anyone
to come walk in memory of Cailean. If you can’t make it and can afford to
make a donation that would be great. To join the team or make donations you
can click on the link below.

http://www.nami.org/namiwalks05/MAS/caileanwalker

Hopefully the sun will be shining, but regardless it will be nice day to
remember Cailean.

Thanks, Mariel

We were pleased to mail off a check for $2, 960.75 to Dr. Fallon at the N.Y. Presbyterian Hospital/Columbia Medical Center last week. The check represented part of the ticket proceeds from the Heart and Soul Talent Show as well as donations received for the “Sharing Sheeran” CD. (Since then we have received additional money which brings the current total to well over $3000). The money is to be used for Neuro-Lyme research in memory of Cailean. Thank you all for helping us to do this! Maureen

On Saturday evening, April 2, (despite torrential rains, wind, floods, etc) family and friends made it to the Garrison School for the Heart and Soul Talent Show which was dedicated to Cailean Walker Sheeran. We deeply thank all those who made the difficult trip (and all those who had the best intentions of being there).

We also want to express our gratitude to all the participants who gave up more than a few evenings (including weekends) for rehearsals etc. Thanks to teachers Gina, Robin, Karen, Marilena, Faith, Tiffany, and Amy for their background singing on “Yellow”, and/or sitting out in the cold, selling tickets the previous weekend, and/or working in the school lobby that night. Dick, Randy, and Jeff were instrumental in setting up the gym and doing countless other tasks. Thanks to Gloria Colucci for her interest and introduction and to Stephanie Impellittiere for her kind words about Cailean. We express appreciation to Marge Travis who prepared a beautiful basket of yellow flowers and to Mary Foppiano who presented us with a wondrous bouquet of yellow roses on behalf of the Garrison staff. Words can not express how deeply we were touched. Diane Travis also came to the rescue with some last minute preparations.

All the students who performed were so talented and worked so hard. Particular thanks to Cailean’s good friend, Christina, who came home from school in Albany to play the flute so well on “Yellow”. We also want to express our appreciation to Richie Rose, with whom Cailean played guitar, for his outstanding performance on Saturday (people are still talking about how wonderful he was). In some way, he was the musical link and truly represented Cailean at the show.

“Sharing Sheeran”, the CD which was available for a donation of any amount seemed to be a big hit. We received over $800 that evening and orders are still pouring in. All proceeds will be sent to Dr. Fallon to be used for Neuro-Lyme research. Special thanks to Alex, Cathy, and Woody who spent a good amount of time burning the CD to help us out.

Finally, thanks to Patty Scecina, her committee heads, and all the volunteers for their hard work which made the show the success it was.

Patty’s idea of dedicating the show and the song “Yellow” gave our family memories we will treasure forever. She dedicated many hours to directing the show and perfecting her singing and keyboard playing on “Yellow”. We are quite sure that Cailean was looking down and was appreciative of all who participated, helped or attended. He lives on in all of our hearts and souls.

As always, thanks for your continued love and support. Maureen

This is the cd that everyone worked very hard to put together. We gave them out to anyone who made a donation to Neurological Lyme Disease. If you would like to get a copy of the cd too you can email me at mariel@slowburn.net

SHARING SHEERAN
Thanks to Alex, Charlie, Daniel, Ryan, and Woody who originated the idea of compiling a compact disc of Cailean?s original music and songs he loved. They worked very hard on selecting and recording just the right songs and title for the project; ?SHARING SHEERAN? is the terrific result. Listening to this CD will be a wonderful way to preserve and honor Cailean?s musical talent. Thanks, also, to Brittany and Mariel for their work on the cover layout/design.Cailean Walker Sheeran embraced life, family and friends until Neurological Lyme Disease shattered his spirit. All proceeds from donations received will be sent to Dr. Brian Fallon at the N.Y. Presbyterian Hospital/Columbia Medical Center to be used for research for the diagnosis and treatment of ?Neuro-Lyme?.
If you would like to read or write about our wonderful son and brother, please visit www.mariel.slowburn.net/cailean/
Please refer to http://www.lymeinfo.net/neuropsych.html
for additional information/links on Neurological Lyme Disease

I came across this assignment Cailean had done in the Fall of 2003..

Cailean Sheeran November 5, 2003
Little did I know that a gift I received on December 25, 1999 would change my world. I had requested a guitar for Christmas that year and was very excited to finally have the Yamaha Gigmaker model in my hands. Even though I did not know how to play a note, let alone a chord, it was a tremendous feeling.

Lessons soon followed. My first guitar teacher was from Wales and introduced me to the blues. That was a style of music that I really had never appreciated before. It turned out to be a great approach to the world of music. We soon progressed to jazz. I was really surprised to discover how these two styles had influenced the rock music that I listened to all the time. I still continue to appreciate and listen to all types of music. This has opened my eyes and ears to many cultures.

My first public performance was at my Eighth Grade Graduation. I went to a small school that had a ceremony that included selections from all the graduates. “Dark Eyes”, a gypsy song, was the first tune that I played. Then, a drummer and I played together on a song that I wrote myself – “Untitled”. There was a lot of applause at the end of each song. Many people told me that my music was the highlight of the ceremony and that I had a lot of talent.

Recently, I have played at some “Open Mike” nights at a local coffee house. At first I was very nervous but I feel more confident now. I actually sang two songs at my last performance and would like to take some voice lessons. When I perform in front of a small audience it makes me feel that I have achieved my goal. Recent purchases of a Taylor guitar and a high technology amplifier should improve the sound of my music, too.

Music has enlarged my world. I constantly listen to all types and instruments. Playing a compact disc that I have recorded of my own music is very rewarding. I hope that my love for playing the guitar will continue. It’s a wonderful experience that has enriched me a great deal.