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.

* * * * * * * * * *

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.

Magic Pish and Psychiatric Expenses

April 29, 2015.Reading time 5 minutes.

Has anyone ever lied to their kids? I don’t mean big ones, I mean little to medium sized lies that shouldn’t impair their ability to trust another human being down the road. I am not proud of it, but I have blurted things to my children and walked away wondering how many sessions on the couch of a psychiatrist I had just caused. Somewhere out there is a young resident with a name like Fringlehoben preparing himself to tackle the emotional burdens of others. Study hard, young man – I may have done some damage.

I love questions from children. I love it when their inquiring minds pull something so imaginative out of the air. Questions are the lifeblood of knowledge. I like them, I really do. Unfortunately, since I am a big child myself, I don’t always see questions as a teaching opportunity. Sometimes, I use them to funnel my own creativity.

In her early years, my oldest wondered how we got things put away in her room without her knowing it. The correct answer was that she was a very hard sleeper. What did I say? I told her that I had the power to shrink super small. The ruse took a few nights, but I finally convinced her and laughed my normal-sized self to sleep. Until, that is, she showed up in my bed and slept there for a month, utterly terrified to be in her room.

Toys have their own category of deception. Annoying toys need to be lied about to maintain domestic sanity. For instance, did you know that often, batteries cannot be replaced? Unfortunately, the toys that make the loudest noises are disposable. Once the batteries die, they are just worthless hunks of plastic. Those screws? Decorative, I promise.

The lie that scarred our oldest the most was about her fish. Or “pish” as she called it at the time. We are pish killers. Not on purpose, just through neglect and ignorance. We’ve had an aquarium, read books, and really tried. Yet they all still die under our care. The only pish we’ve ever been able to keep alive was a plecostomus named Squeegee and that’s because they live off the junk that kills everything else.

We once got a purple betta pish named Flounder. Our daughter loved that little pish. She watched her pish, fed it and took every care to make sure her pish was happy. She doted on it when it slept sideways at the top of the water and laughed when it sliced its way from the top slowly to rest on the rocks. That amazing little pish died 1000 deaths and somehow still rose every morning to greet my curly-headed love. This was no miracle of resurrection, it was solely a logistical effort since the pet store was on my way home from work.

One fateful day I got the death-call but the store had no purple pish. The closest was a deep red one which I purchased and dumped in the bowl when our little angel was fast asleep. The next morning, she woke us slightly perplexed.

“Daddy, come see!”

“What is it?”

“Pish is red!”

Surprised I’d been busted so soon, I ran to her room and watched the little red pish paddle around. The ph balance of the water must have changed it because the deep red had worn off and it was nearly shiny – nothing like Flounder of the day before.

“Why Flounder red, daddy?”

Think! Think! Think!

“Flounder must be a magic fish,” was all that came.

“Ohhhhhh, magic pish,” she said in wonder.

From that day on, I was no longer tied to purple. Magic Pish changed colors frequently. I viewed the little scam as liberating until years later I heard her sincerely describing her color-changing fish as a young teen. I felt a rare twinge of guilt and had to come clean, which brought an open-mouth stare of horror as if her childhood had been shattered.

Please forgive me, Dr. Fringlehoben. If one of my children ever comes to sit on your couch, maybe you should just do a quick study of me to undo whatever damage I’ve caused. I can probably answer a great many of your questions.