Before my son died he asked me to do five things for him.

1. Get his tumors to Dr. Foreman so that he could save the other children. I did. 
2. To NOT bury his body: he was having nightmares about "rotting in the ground" - a direct quote, mind you - because he knew too much. So I had him cremated.
3. To scatter his bones across the world so he could be like the dinosaurs he cherished so much. I do, and many of you have helped.
4. To give Grace and Charlie the specific stuffed animals he wanted them to keep safe for him. I did that too.
5. To visit his grave every Tuesday.

Which is a weird request period, and at odds with number two besides.

I put him in a cabinet in the living room instead, and called it good. But as we draw closer to two years without him I've found that leaving that last request unfinished has made me uncomfortable. The simplest explanation is that a child's understanding of death according to society is that when you die you are buried in a grave and people visit. And Gus wanted that of me specifically. But he also knew too much about death to be comfortable with those societal standards. I assume he had enough faith in me to figure out a way to achieve both, he expected the impossible of me a lot. 

Through sheer happenstance I discovered we can inter his ashes in a niche above the ground in the cemetery that he'd indicated he'd like to have for his final resting place.

Not burying his body, not in the ground, and a place to visit every Tuesday. Boom. Go me.

And there's no requirement that we place ALL of his ashes there. So we can continue with number three as well.

When he made that Tuesday request I had promised him a year of visits. In my head, of course. I'd been setting requirements for myself as well. That I would focus on doing the hard work of grieving for a year - I would give myself space and peace and grace to grieve however I needed for one year. And after that time was up I could continue in whatever way I wanted, but I HAD to for that first year. That worked out really well, honestly. I felt free on October first. Which isn't to say that I have stopped grieving, or feeling awful. Just that I hadn't been repressing any of it, hadn't let anyone make me feel like I should start "moving on."

There's a reason I'm doing as well as I am, you know. 

And a year of cemetery visits felt like it fit just right. 

This year for G's Deathday we are not throwing a party - I'm trying to get the house really truly finally finished and I don't want to rush. And besides that we found something we need to do more. 

On September 29th we will be placing Gus' ashes in his permanent home, a marker sharing his life with all who come to visit their loved ones in the years to come. For as long as the granite lasts everyone who sees it will know he lived.

There will be no ceremony, it won't be An Event. Just us, quietly fulfilling his final unfinished request. Another step on the path through grief. One last thing for me to do for my stardust child, who had more faith in me than I did sometimes.

He never asked me to save him, just to make him immortal.

I think I've done pretty well. 
There's this thing that happens, more often lately than before. It's not a bad thing or a good thing, it's just...a thing.

As we've started focusing really hard on cleaning and sorting and shedding all of the *stuff* we collected over the years we're uncovering all sorts of things. Stuff that makes me say, "why on earth did we keep that!?" or, "oh wow, I've been wondering where that went."

We don't need this anymore, that was a stress purchase, this is from when they were toddlers, wow.

Those jeans haven't fit in ten years! Heh.

But the thing that happens as I pull boxes out and sift through the usual opened credit card applications I meant to shred, and the water bill from two years ago - the piles of paper that were covering the counter and you just don't have the energy to sort so you chuck it in a box and call it good.

There's a drawing with Gus written on the back. And all of the air leaves the room in a flash.

It's a box you put together purposely before he even died, of things that you knew you'd want later.

And it's just unexpected. You forget you'd been stashing those things since May of 2015.

You had his signature tattooed over your heart because you knew deep inside that one day you would let go of the papers he'd written on and it would never get any more advanced.

And now you were just going to shred all those old bills but without warning you have to decide whether to keep this piece of paper or put it in the recycling bin. It's easy with Charlie's. His will be replaced over and over again, only the really unique things are kept so that he can look back many years from now and see his history. Then decide if it's memories he wants to keep longer or let them go.

Memorializing your child changes your perspective on letting go. Some parents can never let go of anything again. Sometimes it gets easier. 

That thing cannot replace my child. How much of his memory does it hold, and does it bring me joy.

The seventeenth "weekly work" page is easy. No, jesus, chuck it.

But this drawing, do I know when he made it? Do I know what it is? Is it just his name that catches me?

Once the first page pops up and you breathe through the surprise and make the choice, you spend the rest of your sorting preparing to find more, to choose. The further you get the easier it is to smile and file it in the recycling.

It's a thing that happens that every parent goes through to some extent, usually at the end of the school year when everything comes home.

But it's just slightly different for us.

It's a thing.

Do I keep the last prescriptions he was given for the intense drugs we used to keep him comfortable while he died? 

Or not. 
They are simply gone.

Hazel Anne was seven months old when she was diagnosed with Anaplastic Ependymoma. She and Gus shared the same doctors, and nurses. From diagnoses to surgery, to radiation and on, we have shared our entire journey with the lovely Miss Hazel. Sadly, she had recurrent tumors diagnosed when Gus started chemo in January of 2013.

I put her MRIs on my calendar so I knew when to be there to support her mom through the stress. Her mother was who I reached out to when I scheduled Gus' - only she knows what that day feels like. It was through Hazel's mother I knew of Campbell Hoyt, whom I spoke of previously.

Recently Hazel's disease progressed and she had another round of radiation to hopefully shrink the tumors a bit, and give her relief. She was doing so well.

Last night Hazel was admitted to the hospital for pain control and quite unexpectedly...left. She was just three years old.

There are not words enough in any language to express what the loss of a child does to your heart. There is no way to say "I am so sorry" to her parents with the weight if what it feels like to know that she is gone, and there is nothing at all that will console them, and her grandparents, her entire family.

There is a hole in the world today.
We got the call today, his bloodwork has already returned to normal, a full month+ sooner than expected.

Until one of the many many (many) MRI's he has in the next 6 years says otherwise, my child has survived, beaten, and fully recovered from BRAIN CANCER.

I? Am a proud and relieved mother today.

Yay.
Why yes, I am awake at 4:00 am, how kind of you to notice. Parked on the couch with Gus, waiting to see if he's going to throw up again, and Charlie who notice the commotion and insisted on joining us. We're watching Mickey Mouse Clubhouse. Thank god for 24/7 preschooler programming I guess. :/

I recorded our entire journey through our son's cancer diagnoses and eventual death, and the grief that followed. In an effort to make our story publicly accessible I am slowly transferring all of those posts here from Facebook - starting at the beginning. Some posts may be lacking greater context as a result, and the story may be incomplete for a long time. It is a very slow process, but I feel there is value in presenting the path as it unfolded