Disclaimer

Don’t read this post if you prefer only happy thoughts today. There are plenty of other posts better suited for that on this blog and others.

This post is sad.

This post is heartbreaking and uncomfortable.

This post relays some of the realities of burying a child. It hurt to write and will likely be hard to read.

Once you read this post you will know – and you can’t unknow what you know.

If you want to stick your head in the sand and pretend that we are doing enough to cure childhood cancer, this isn’t the post for you.

You’ve been aggressively and sufficiently warned. You might want to stop reading now. I won’t think any less of you, I promise. I admit that I turned my head away up until a few years ago – but now I know and I will forever know.

* * * * * * * * * *

Two things happened on a Tuesday last month – one planned and one a surprise.

We had a piece of unfortunate business to attend to. Many of you have been through the death of a loved one and were responsible for the pragmatics of laying them to rest. This was our first time. We had been putting it off, but if we want a grave marker for Kylie, it had to be designed.

So on that Tuesday, we went to the funeral home where Kylie was buried. Nothing about being there was easy. Even though it is owned by dear friends and I’ve been there for countless funerals, it screams of the day we buried Kylie. I remember planning the service, the line of people at visitation, saying goodbye to her, holding my crying girls, and the sinking feeling of permanence. Worst of all was the shock of sitting in the back of a car when the casket came out carried by my seven nephews. I don’t know why that moment was so poignant. Maybe it was the sheer surprise of the door opening or because I wasn’t doing anything. I had no role at all. Like during her treatment, I was relegated to being a spectator. Whatever it was, those young men emerging with that box will forever be etched in my mind.

On this Tuesday, we sat around a table and talked. Earlier I had asked Robin to think about what she wanted on the marker. She had never mentioned it and didn’t show up with notes. But when asked, she rattled off what she wanted and it was perfect:

 

 

Soon after we finished that piece of business came the surprise. It came in the form of eight copies in a manila envelope. Eight copies. Eight copies that reaffirm what I know every day. Eight copies that make me feel helpless, weak, and insufficient. Eight copies that bring me to tears as I read entries such as MARRIED: NEVER…

Never means never.

 

 

 

I hadn’t thought about getting these documents. I suppose I need them. I’m not sure what for – she didn’t have a trust fund to dispense or a will to execute. She was just Kylie, 12 year-old Kylie, and now she is gone. I feel her gone-ness every minute of every day.

 

* * * * * * * * * *

This is how it is when you lose a child. The thing we had to do was difficult, but sometimes easy things like accepting an envelope devolve into an emotional crisis and break you into a puddle of tears.

We had driven separately and I cried the entire way home. I think seeing the death certificate brought back feelings of failure as a father… that I didn’t do enough to protect her. It felt so real and concrete, carved in stone.

I managed to keep the envelope away from Robin’s sight and stowed it into the safe with our other family records. Birth certificates, passports, insurance policies, marriage licenses, and now our first death certificate. Oddly, according to the state of Georgia she died of respiratory failure, not the insatiable beast of cancer. Maybe that is how the government rationalizes the fact that since 1980, only three new drugs have been approved specifically for use in the treatment of childhood cancer.

Wait! What? Did you hear that?

While hundreds of drugs have been approved for adults in the same time span, children are dying and getting next to nothing. In this age of genetic discovery, children are receiving a pittance… table scraps.

And so, Kylie is gone. I have eight copies of her death certificate to prove it and unless we step up and do something, other parents will get the same envelope.

I feel about as helpless to affect government spending as I did watching her body capitulate to cancer.

But you read this. And now you know. You may choose to ignore, but you can’t unknow. Maybe that’s a step. And if you tell someone, then they will know too.