Don’t Read This Post

June 17, 2015.Reading time 6 minutes.

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.

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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.

The Frailty of Fair

April 25, 2015.Reading time 5 minutes.

We’ve talked a great deal about the concept of fair of late. An odd word, fair. If you look it up in the dictionary you will find it has nearly seven times as many definitions as it has letters. The one that pertains to our conversation is:

conforming with the established rules.

Children all over the world cry daily, “That’s not fair!” I have a daughter who has a justice meter and feels that everything should line up equally. If things do not, she will protest the unfairness of the situation. She gets that from my lovely wife whose righteous indignation will rise at anything wrongfully appropriated. Things must be fair.

But they aren’t, are they?

Fair is a myth. Oh, we try. We make rules and establish laws to make things as fair as humanly possible. But there is something bigger at play. There is an overarching fairness that we can’t comprehend. When we put things in their cosmic proportion, we can make things as equitable as we want to and they will never be fair – because we are not in control.

Tell the orderly little ant about fairness when he is marching in the line, doing his job and he watches fifteen of his co-laborers get stepped on by the careless human. Sometimes, I feel like that ant. I’ve seen the footfall of God land on someone I love. His concept of fair is different than mine.

It isn’t fair that Kylie got cancer. No one can explain how it happened. They told us that somewhere along the line a gene mutated and boom, a tumor appeared. Random. It isn’t fair that she started doing so well only to fall victim to the silent spread of the disease. Likewise unfair is that she had ten torturous months of treatment.

While she was in treatment, she met a housekeeper in the hospital whom she loved. Ms. Nikki made her smile. Whenever Nikki came in to do her job, she made it a point to talk to Kylie, encourage her, and always seemed to find a way to make her laugh. She was sunshine on many awful cloudy days. Early on, Nikki and I started doing a “Going Home” dance together on discharge days. I assure you, she was a much better dancer than me and Kylie always wanted to find her before we left so she wouldn’t have to endure my solo.

Kylie with her friend Ms. Nicki — Kylie with her friend Ms. Nikki

On a trip with her children recently, Nikki’s car was struck by two cars going in excess of one hundred miles an hour. Two of her children were ejected from the car and killed on the scene. The third died at the hospital a few days later. In an instant, the wonderful Ms. Nikki lost the three things most precious to her because of someone else’s carelessness. Where is fair?

Death is never fair – be it instantly or after a long illness. It leaves too much pain and too many jagged edges.

My heart cries out for Nikki – for her loss, her pain. While I am grieving my own loss, I cannot imagine hers. I pray for a peace that seems as unattainable as fairness in this broken place.

I wish I could make things fair. I never will be able to, neither will you. The only thing we can do is love those we are tied to as long as we are here and as long as they are here with us.

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Thank you to those who helped Kylie’s friend Nikki