The business of dying Children

01/20/2009

**Kleenex warning**

I love my job. I loved the job I had before this one. However I have learned there are aspects of this job that are far harder than my last job.

In my last job I was helping parents who have lost children. A lot of people thought my job was incredibly depressing and so filled with grief. Surprisingly enough it wasn't. The parents I was working with were some of the happiest people I had ever met. They were hope personified. Though there were days that I wondered why I was doing what I was doing. Like the day I was called to the hospital because one of our parents wanted to see me after having some difficulty after the 1st anniversary of her childs heaven date. Or the day that a parent came into my office and just told me everything about the loss of her child just a month prior. She spoke for 1.5 straight hours. Despite experiencing the worst thing that could ever happen to a parent, they kept moving forward. That was a beautiful thing. What made it easier was that these children were already gone. Or as I mentioned to our admin assistant last week. I knew where those kids were. I knew what had happened and I was at peace about it.

My current job is to help grant wishes to children with life-threatening illnesses. These children could die. And some of them do. It's a reality their families face every day. And that's hard. So much harder than working with bereaved parents. Because their children are already gone. We recently had one of our wish children fly away home. He received his wish in 2002 and had never stopped fighting his cancer since then. A few months ago we had to cancel a wish trip for the first time. Her wish was to meet Dora. They found more tumors in the stomach. She'll now be ungoing more chemo for the next year. She's three. This summer one of our wish kids passed away after her cancer came back. She was 15. Kids aren't suppose to die.

It's now become my job to send cards to the families who lose children. Because I have experience doing that. I know what to say. It's weird being able to say that but that experience has become invaluable in this job.

We don't lose kids very often. Not like we use to in the 80's apparently. Because of medical research and advances in technology our "success rate" is very high. Under no circumstances do we think we have anything to do with our children being cured. We have no illusions of grandure. These kids get better thanks to medical science. We just provide a break from the needles, the hospitals, the feeling sick. We provide them with a chance to feel like a kid again. To experience something that is once in a life time.

It's a sad reality that there are many children in pain. That they suffer, that they die. This reality is part of my job. People don't like to think of three year olds with inoperable brain tumours. Or 10 year olds that have strokes during open heart surgery. I have to think about them. I can't help but think about them. You would not believe how many people are in denile that things like this go on in the world. I was at a charity gold tournament and one gentleman looked at our display and was in utter disbelief that every single one of those kids had a life-threatening illness. That things like this happen to little ones. Not letting these things be a blip on our radars keeps us safe and our children and our families.

Part of my job is making sure people don't ignore these kids. Which is sometimes a losing battle. People don't like to think about kids with cancer. And futhermore people do not like to think about dead kids.

We can prepare ourselves for cancer in adults. When my Opa was diagnosed last year. It made sense for him to have cancer. As crass as that sounds. He was an adult. An older adult at that. It doesn't make the diagnosis any less like being kicked in the heart. But at the very least it made sense. Grown ups get cancer.

We can talk about cancer when it involves adults. We wear bracelets. Create Cancer Awareness months, but what of the children? Why can't we be just as aware that there is such a thing as Hepablastoma? Why can't we talk about it openly? Like we do with Breast Cancer and MS and Parkinsons? But I don't know what to say. Only because you don't want to know. Because it can be hard to know.

I am incredibly lucky and humbled to have met the children I have met. To meet their parents and hear their stories. To see their pictures of their trips and dreams coming true. But I am also humbled by their courage and the peace they have about what could happen to them. I also have hope. Hope, that these kids will be okay. Regardless of what happens to them.