In the hot flashes of anger that followed my son’s death, I had some strange thoughts. I’ve never really talked about them to more than a handful of people. Joel was just 5 years old when he died from an aggressive brain tumor. It is amazing how quickly you have to begin making plans after someone dies.  I told my friends it felt a lot like planning a wedding except that all the decisions were terrible.

As we discussed a memorial service and wrote an obituary, I became frustrated.  What could we say about Joel?  Funerals are supposed to be for old men, not little boys. We should have been able to talk about Joel’s life work, his wife and children, his great impact in the world. What could we even say?  He loved bubbles? It made me so angry. I told my husband I thought we should just walk up on the stage of his memorial service and say “I hate all of this” and drop the mic. I seriously wondered if maybe we shouldn’t just wait a year to have a memorial service, so I could talk about Joel’s life when I wasn’t so angry that it wasn’t continuing.

It was a strange week: picking out a “nice spot” for his burial. trying to imagine our family spending time crying together in this shady area under the tree, or over there with the view of the mountains … asking friends to pick up snacks for the viewing, ‘what kind of juice do people like to drink during tragedy?’ ...  measuring his body for the casket, only to discover he had grown another inch and would have been able to ride the rides at Disneyland that he couldn’t ride just the month before, during the bitter sweet trip we took, trying not to dwell on the fact that it was probably his last.

A terrible week with terrible decisions, most of them expensive, but everyone was so generous, sending us money in greeting cards like it was some macabre graduation party, but they were right to help us, because the last thing I wanted to think about was how much all of this was costing, and so I was grateful for each new envelope.

We finally settled on what to say about Joel at his memorial service. We made videos about all the things he love:, dogs, water, his brothers, music, horses and when were done sharing every photo and video we could possibly share, we talked about how loving Joel changed us. He might not have had a job, or a wife, but he did impact the world, because he impacted us.

In the time that has passed, my anger has cooled.  I’m less bitter that we couldn’t know more about him and I lean into the things I do know, that he thought falling down was hilarious, that he loved babies, and that filling his mouth as full as possible with pancakes was one of his greatest pleasures.

It turns out a memorial service is not the best time and place to remember a person. It’s too fresh. Sometimes you don’t even know yet what you will really miss the most about the person you are memorializing. It took me weeks to settle into a life without my son, to know that joy felt different without his laughter in the mix, and to realize that I was glad to have a little hole in my joy that could never be patched.  It was a space reserved for Joel and I didn’t want it filled.  Not only do we want to keep talking about Joel, we want others to keep talking about the people who changed their lives, to celebrate the little spaces in their hearts that they don’t want filled in either.

So, when we release the videogame we made about Joel on January 12th, we’re going to eat pancakes.  He would have liked that.  We hope you’ll eat pancakes for dinner too.. January 12th is Joel’s birthday. He would have turned seven this year, and photos of people all over the world eating pancakes in his honor would be a pretty great present to our family, who still miss him and his sticky syrup face.  While you’re eating pancakes, and taking photos and posting online, share about someone you love and miss and wish you could have know just a little better.

If you post photos on social media using the hashtag #ThatDragonCancer (the name of the video game that memorializes him better than any eulogy or tombstone ever could) we will see them and share them and know that a little boy without any accomplishments to speak of at his memorial service can still change the world.