St Baldrick’s was a great event. Thank you all for helping make it a success. Our team, the Green Drakkoman’s Team, raised over $12,000 in Albany and other folks across the country added another $3,000 by participating in their locations. Over $15,000 was raised in honor of Ben. I heard some really great stories about Ben and the impact he has had and continues to have on the world. I shared some great memories of Ben and James with people I see often and some I have not seen in a long time.
If you weren’t able to participate don’t worry we will be giving you all other opportunites to help make a difference; to help ease the burden of a family whose child is in danger of losing their life, to help researchers find a new treatment, to train the healer of tomorrow. Our goal is to find ways to do it that put a smile on your face and bring more laughter than tears. We will be looking at events that Ben would enjoy and be proud of. If you have any ideas please share them with us.
On March 27th, this Saturday, before the water polo game that starts at 1 pm the Siena Athletic Department and the Women’s Water Polo Team will be honoring Ben as a member of the team. There will be a ceremony before the game. We are going to try and arrive around Noon to get the good seats. After the game there will be a reception in a nearby building. The ceremony, game and reception are open to the public. The game is an important one against a really good team so they will need our support more than ever. We are hoping to fill the stands with Siena fans as they play Hartwick. You don’t need tickets or to preregister. The game will be at the pool in the Athletic Center.
Ben really loved St Patrick’s day. It was a day of magic because Lucky the Leprechan would invariably make an appearance no matter where we were. For those of you who don’t know about Lucky. He is full of mischief and on St Patrick’s day he shows up and makes a mess of things and plays simple pranks on people like hiding things. I know that some of you have stories about discussing Lcuky with Ben and I’d love to have you post them on here as comments. I remember Ben returning home form Kindergarten and telling me with excitement how lucky had rearranged the classroom the night before. It was an exciting day of finding the things that Lucky had done and making the right. Ben had drawn a pot of gold for Lucky and we had the drawing hanging on our sliding glass door for a long time. Ben understood that you could play a prank on someone on St Patrick’s day and they would automatically blame Lucky. It just added to the fun and magic. As with most of the magical things about Ben it was really hard to tell where the line of belief was with him. He understood that the magic of the moment was in allowing yourself to believe the things that made life the most enjoyable.
EASTER BUNNY SPOILER ALERT
I remember discussing the Easter Bunny with the boys after one incredibly fun Easter Egg hunt. They were running around with joy and abandon looking for signs of the Easter Bunny. Chasing down eggs and just laughing, running, looking behind pushes and looking for the Easter Bunny. As we were opening the eggs inside I made a comment about how cool the Easter Bunny was for leaving them all of the candy and the baskets. They were so into it I was sure they believed the Easer Bunny was real. Ben looked at me and said, “Daddy, the Easter Bunny isn’t real. You do know that, don’t you? A rabbit can’t poop out eggs. He isn’t real, not like Santa?” I was dumbstruck. All I could think of was “Oh my God…What am I going to do when the Santa Claus kicks in?”
I am convinced that Ben had a really firm grasp on reality. Perhaps better than most adults. I watched him talk about God with ministers; bringing up concepts, ideas and observations that most adults don’t understand. He would explain them so simply and ask thoughtful questions. I watched as he could suspend his disbelief in a movie, at a play or in the moment with children younger than him – as long as the little ones weren’t playing with his toys. He called littler kids “toy lickers” and would tell them they couldn’t play with his Legos until they demonstrated that they wouldn’t lick them. Ben understood the magic of the universe and the need for belief.
This weekend on March 21st at Savannah’s in downtown Albany there will be a St Baldrick’s celebration to benefit the Melodies Children’s Hematology/Oncology Clinic at Albany Med. Ben loved the fact that people would shave their heads to show solidarity with the kids that lost their hair in treatment. Although he was well known for telling people whether they should do it or not. He might say, “You really shouldn’t do it. Your head isn’t shaped well for being bald.” We have assembled a team and the team has done amazingly well. We have raised close to $7000 and I have a few checks that aren’t included in the total. Our team starts getting shaved right at the beginning. We are starting around 2 pm and are lead by a wonderful girl named Alexa who has raised about half of our total. We are already starting to plan our first Green Drakkoman Foundation event and you will be hearing more about it in the future.
The Green Drakkoman has assembled a team of amazing indiviuals who wish to shave their heads in solidarity with the children whose bodies have become a battlefield.
March together in honor of Ben S. towards a day when children will no longer be pumped with poison to destroy these deadly diseases.
Share joy, laughter and tears with fellow warriors in this life or death trial that these young people face every day.
Mondays have never bothered me. When Stacey and I were self employed artists Mondays were our day off so we looked forward to them. Subsequently Mondays always felt good. Last month I noticed that I cried more on Mondays than any other day. I realized that every Monday is tinged with loss. Monday was the day Ben’s left this world and the rest of us behind. Surprisingly it isn’t the date that gets me it is the day of the week. The past week has been tough because we have watched as several of Ben’s fellow warriors have ended their battles. We have come to know these families through our children’s common enemy. The majority of the kids that we have known who were diagnosed around the same time as Ben have either passed away or have entered hospice care. We hold on to so much hope for those who are doing well. We NEED them to be NED and to not just survive, but, thrive.
I have a couple of events and dates to throw at you. On March 21st at Savannah’s in downtown Albany we will be participating in the St Baldrick’s day event. It was one of Ben’s favorites and it is a great time. Ben liked the idea of people shaving their heads in solidarity with the kids in the battle. He actually explained to me what solidarity meant. He said, “It shows that they are trying to have something in common with us. To experience a little bit of what we experience. To be like us, but, not like us. To show us they support us and care.” The event works by people asking others, “How much would you donate to fight childhood cancer if I shaved my head?” You don’t have to shave your head to donate and nobody is forced to shave their head. It is actually a really short haircut – no razors. If you would like to join our team or donate in Ben’s honor here is the link – www.stbaldricks.org/teams/GreenDrakkoman We are currently the number 1 team and a couple of other teams seem to be gaining steam so we could definitely use more team members. You can also come to the event and cheer people on.
On March 27th at 1 pm the Siena Women’s Water Polo team is playing a home game at the Siena Athetic Center pool and they are dedicating the game to Ben’s memory. They want to honor him as a member of the team. If you are in town it would be nice if you came out to support them.
On May 23rd we will be bringing a work team up to Double H to participate in the final work day to get the camp ready for the campers arrival. We will meet at Blue Creek Elementary School at 8 am to set up car pools and then head to the Ranch. We will work until 1 pm or when everything is done. After a quick lunch we will join folks from Double H in the garden. Ben’s name is being added to a bronze plague that recognizes individuals who embody the spirit of Double H Ranch. We will have a brief memorial service and then we will spread some of Ben’s ashes around the camp. If you are coming to the work day we need to know ahead of time so the number of jobs and the lunch are sized correctly. If you are coming we would also like you to check out the “Wish List” on the Double H Ranch website and bring something from it. If you can come please send me an email at email@example.com and I will get you the sign up paper work. We are hoping to get between 50 and 100 people. The more people the easier the work will be and the quicker we will get it done. There will also be opportunities to tour the facility and talk with staff members. You will get to see why Ben loved Double H and feel its’ magic.
After a baseball game at Fenway we were heading home. It had been a great day with a good game and a chance to meet David Ortiz. David Ortiz had signed Ben’s head. The boys were comfortable walking through the crowd and were a little bit ahead of us. They spontaneously held hands as we scrambled to fire up the camera to get this picture.
The Latham Fire Department recently held a blood drive in honor of Ben. They did the same last year and Ben was able to astop by and thank people. One of the Girl Scout Troops has held several blood drives at Calvary United Methodist Church in honor of Ben. I was asked to write something for the folks to read while they were having juice and cookies after donating. It is so important to us that people know the importance of the simple acts of kindness that they do. The following message is what I created.
We would like to thank you for donating blood today in honor of Benjamin Stowell. The young man this collection is being held in honor of was very special. He was my son. He was diagnosed in September of 2006 with osteosarcoma at the age of 6. Throughout his treatments the chemotherapy would cause his blood counts to drop precipitously and he received a great deal of blood products. He also endured multiple surgeries on his arm and lungs during which he also received blood. As a lifetime blood and bone marrow donor I took my donations for granted. The first time I saw the life giving fluid dripping into my son I realized the hope and love that was contained in each drop. I prayed through my tears that whoever had donated the blood would be blessed with the understanding of the immense importance of their gift. You truly are giving not just the gift of life when you donate blood. You are giving the gift of hope and without hope life cannot exist.
On October 12th 2009 at 6:20 PM Ben arrived at the end his journey along an arduous path at the age of 9 years old. In 2006 Ben was diagnosed with a rare cancer called osteosarcoma in his right humerus. Ben was assisted in his journey by a super hero of his creation – The Green Drakkoman. Ben was an inspiration to anyone who met him. When things looked darkest he would often say,”Remember, Focus on the Positive.” He was able to inspire adults in ways that we never anticipated. Ben never let the osteosarcoma limit him. He chose to live life full on and had many accomplishments to be proud of. He attained the blue belt in karate, learned how to snowboard, took guitar lessons and most recently started to learn how to play the cello. He attended Blue Creek Elementary School in the North Colonie School District and was beloved and celebrated by not only his school, but, the entire school district. Ben’s goal in life was to become a “fire-fighter doctor” and was inducted into the Latham Fire Department as an honorary member and responded to his first call after the induction ceremony. Ben was also a member of the Siena College Women’s Water Polo team and was an honorary Bat Boy for the Red Sox. In 2009 he became the first player/owner in North Colonie Youth Baseball league when he sponsored The Green Drakkoman team. He attended church at Calvary United Methodist church and maintained a simple yet very strong faith. The community at large wrapped his entire family in their loving arms. In the last moments of Ben’s time here on earth he was held in his parents’ arms as they lovingly caressed his head and told him they were proud of him. His last moments were very peaceful. He had a well lived life. In addition to many loving relatives Ben is survived by his twin brother James Stowell, his mother Stacey Gerard, his father Tim Stowell and his dog Mocha. The story of Ben’s journey with osteosarcoma is on our website http://www.greendrakkoman.com. It is currently being transitioned and new content will be showing up soon.
Thank you for being a blood donor.
I am sorry that you have not heard from me for a really long time. We have been doing a little bit of Twitter and using Facebook a great deal. The thing about writing for this site is that it takes a great deal of focus. When I am writing about things that have happened or are happening I find myself reliving the moments emotionally and mentally. The pain of losing Ben (first time I have used a form of the word lost) is like nothing I ever could have imagined. Please don’t even try. I wake up every morning hoping that I have just had the worst nightmare ever. I have literally bolted from my bed out of a sound sleep at 4 am in the morning, wide awake, and then almost immediately realized that it was not a dream. I watch the way that James and some of their friends have handled Ben’s passing and I am amazed. The kids with their simple faiths and innocent, magical outlook on the world seem to be able to handle it so much better than adults. Once again the children are teaching the adults what matters. One child said, “Ben is with me forever. I’m keepng my special memories in my heart.” James told me just before Christmas, “I think I have cried enough tears.” I asked him at one point if he missed Ben and he replied, “Yes… a little… sometimes… it’s hard to be sad MY life is pretty good.”
We are starting to work on the Green Drakkoman Foundation. We have some wonderful ideas about how we can increase childhood cancer awareness and contribute to “Beating Childhood Cancer.” We are also working on ways to help those facng the worst fight of their family’s lives. We will be reaching out to you to be part of The Green Drakkoman’s Team. That is one of the things I have learned from Ben. The Green Drakkoman never goes into battle alone. He assembles a team that have the skills, talents and drive that he needs to defeat his foes. We are going to be working with other charitabe organizations large and small to create synergistic energy to ‘Beat Cancer.” We will remind each other to “Focus on the Positive.” If you have ideas we welcome them. If you have skills and talents that you can offer us we will use them. If there is anyway that you can help us in our mission we will accept it. I know that you guys are still out there. After months of no updates, for whatever reason, during the last 2 weeks there has been an incredible increase in the amount of folks checking the site and this blog. Something positive is going on and we (you and I) are part of something that is wonderful. The we in the title of this post is all of us, not just Stacey, James and me.
Ben’s passing was beautiful and loving. It was not easy and I assure you that there were a great number of tears. We will be having calling hours on Thursday at Bowen & Parker Brothers funeral home in Latham from 3-7 PM. Ben’s funeral will be held at Calvary United Methodist Church in Latham at 10 AM on Friday. Throughout this entire journey Ben’s friends and the children of our extended community have embraced us in so many ways. Every child that interacted with Ben throughout this did so with love and kindness. Please affirm this with them. He knew they were his friends and he wouldn’t want them to feel bad for any reason. We know that Ben’s passing may be very hard, confusing or just tough for them. We also know that for some kids it may be easier than for most adults because they have a simple faith and understanding of the world. Please take this opportunity to embrace your children and let them grieve in a way that works for them. No question is inappropriate. No statement is wrong. We have been told that children grieve in pieces and they often swallow the hard news in small bites. If you are concerned that your child is having a tough time please reach out to their school or religious leader. If your child wishes to come to the funeral home or to the service they are welcome. All are welcome, but, if you are not here for any reason please take a moment on Friday to “Focus on the positive” with your loved ones and know that Ben loves you and is at peace. We have asked that the funeral be child friendly and celebratory. I am sure their will be adults crying as their children say, “Stop that. You are embarrassing me.” We are also hoping to see very few ties and fancy dresses. Please be comfortable and wear something that makes you think of Ben or feel good about yourselves.
During the calling hours at the funeral home Ben’s casket will be open. There are several smaller rooms that will be available for the children to be in if they decide or feel uncomfortable. The funeral home spaces meet James’ approval. If your child, or any one for that matter, wishes to write a note, make a drawing, bring a picture, memento or make something to celebrate Ben and their/or their friendship they are welcome to do it. We are open to celebrating Ben’s life through the eyes of a child so please share with us any ideas your children have. I have decided to place a single Lego Mini-figure in Ben’s casket along with a David Ortiz baseball card. Funerals are not really for the person who has completed their journey. They are for the healing of those who must still continue living life. If there is anything Ben has taught us it is that each of us is precious and that life itself needs to be celebrated as much as possible between the times of struggle. The community at large came together to support Ben and our family in unimaginable ways and now we ask you to come together to support each other with just as much effort. We will be asking for your help again in the future as we move forward with the Green Drakkoman Foundation. For now please know that Ben loved you all and he is in a place where there are no children fighting for their lives – a place of celebration and light. He is in the arms of the angels and wishes all of us peace.