Hello Camp Ooch staff,

I just wanted to thank you and the counsellors at Camp Ooch for doing all you do. I continue to receive photos, stories and little notes to say we are thinking about you and we miss him. These mean so much to me. They are presents - the best that I can ever receive!! And I know they are very sincere.

I remember Dustin’s last few weeks and when the very special Ooch people came to say good-bye. I knew Dustin touched your lives just from the effort you displayed by travelling the distance many of you did and rallying near him. The funeral was such a blur I do not remember who was there, but I know many of you came. The stories you shared with me at these times were so precious and enlightening. You helped make those difficult days so much better. With your presence and your stories, your prayers and your poems, that so many of you left me.

It is very evident that Dustin’s life touched yours as he did many others. I truly believe that you had the opportunity to see Dustin as I could not have. With me there was so much hospital and illness ― many times I had to be Dustin’s pillar and the one to try to encourage (sometimes force) all that hospital stuff. Dustin used to get so mad with me at times. But that’s what moms are for ― and I knew that… I was his “safe” person to vent at/with, and he needed that outlet.

Sometimes I envy the position of you and others at camp where you had the opportunity to see Dustin’s spirit: his true happiness and the ability to be a kid having fun. I was confused/bewildered many times when I would hear people from Ooch talk of Dustin ― I never understand what it was about him specifically or how Dustin managed to influence people the way he did. I guess I saw Dustin as I always did. He was my son. So perhaps you had the opportunity to see him as a freer spirit.

It was very difficult for me to send Dustin to camp that last summer. After his relapse in March 2001, I was very aware that this was very likely our last year with him. Since his diagnosis, his summers were so busy with his camps, his sisters and I hardly saw him! I would have loved to just take that last year and hold him in my arms and steal every moment I could have with him. But I knew he needed more. And life goes on… Being a single mom attending university with two young daughters and a terminally ill child, a mortgage and bills to pay left little time and energy to embrace those moments regardless of how much I wanted to.

I don’t think I’ve ever mentioned this before to you. After Dustin’s relapse, it was a long, slow struggle for him to get back on track. He was so sick that everyone (except me) had doubts that he would make it through. I knew better. This may sound corny, but I truly believe it ― Dustin loved camp so much that I believe he made it his will to live long enough to attend one more year. All he talked about while he was improving was camp in the summer. “I can go mom, right?” By George, I was going to make sure I did what I could to make sure he got there!! Dustin had his own agenda: he made sure he got there.

He improved so well, that regardless of everyone else’s doubts I knew he would be there. I tried to understand what camp did for him. It was obvious he needed it. I think I finally began to understand. When Dustin got on the bus to go, he could not walk. I remember him using his walker at home that he received that week before, and he was still unable to put his foot flat, it hurt too much. I called throughout his time at camp and I was told he was water skiing. I thought, “No way ― the kid can’t walk, they must have the wrong one”. But now I know different ― and I have the pictures to prove it!

Those two weeks were the longest ever for me. That was the longest Dustin and I had been separated since his diagnosis in July 1999. I missed him so much it hurt. I used to think ― what will I do when he is not here ever? Then finally my little boy was coming home. I remember him trying to get up out of his wheelchair, and I said, “Dustin, what are you doing?” as I ran to catch him, as I knew he could not walk. The little bugger got up and started walking!! The tears began to fall from my eyes. I knew right then what camp did for him!! I knew camp, with its own magic, did what I could not do.

I received the letters from Dustin that he wrote at camp. He did not write much ― the letter said “Dear Mommy, I am having fun,” and he filled the rest of the page with kisses and hugs. But I knew the energy it must have taken to write the letter, as he had little fine motor skills at the time. It must have drained him. And it is one that I look at often, and will treasure forever.

All those things were little clues for me at what Camp Ooch did for Dustin. Another thing that really, truly touched my heart was the tribute that was written for Dustin in the Ooch newsletter. Especially the part where the counsellor let Dustin go on the lake without any restrictions because he realized that Dustin needed some freedom. I was very impressed that the counsellor understood what many people do not. This was a struggle I had for Dustin in society: to allow Dustin to be “free” and remind them that he was a little boy that wanted to be just that: a little boy. Society (school, clubs, etc.) was always telling Dustin what his abilities were and what he should do. Dustin had very little control over what he was “allowed” to do. He was a child that so needed the ability to make his own choices. He was a fighter that did not need restrictions; he was a “look out world, here I come, and nothing is holding me back!” kind of kid. I truly have the feeling that he was allowed to do just that at camp. Which I am sure was one reason he loved it so much.

I really would like to thank everyone for all the stories. It was wonderful to hear about Dustin’s life at camp ― it was the part I never got to share with him. All the pictures I saw from camp he had such a smile, and he looked so relaxed, so happy. Thank you for taking such good care of my Dustin and letting him be himself.

Sincerely,

Susan Dokis-Listman