Day 5 Without Kilian

This is not something that happens on a Tuesday and by Thursday you've forgotten what you were even upset about. This is something that will steal all the time of forever and still need more. This is void that will never be filled.

We are on our way home from upnorth. Whatever home means. We've spent the last 39 days going back and forth from said home to Milwaukee. You live in a completely separate world from the one you were living in prior to something like this. Your reality is so wildly different from any person you run into, and you might as well live on a deserted planet - not a single thing beyond the immediate day in front of you and your child matters.

We split time between the NICU, the NICU sleep rooms, his room in West 3 and family lounges and hotels and a house we called home. Drive thrus, the hospital cafeteria, red dye 40, coffee and high fructose corn syrup make up the NICU diet. You sleep when you can, which is mostly never. You find the never to be found time on your phone being spent researching some new medical term instead of catching up with what Joe Blow is doing on Facebook. You spend hours upon hours in constant thought. About the what ifs, the what have happeneds, the what are to comes. Your brain never stops asking your heart if you're doing the right thing, and your heart never has an answer.

You have notes upon notes in a notebook you started writing everything down in, starting with the very first call about the ventriculomegaly, because you'd have no idea what was going on if you weren't able to go back and study those notes later.

You live out of airplane luggage, never completely emptying them..just pulling out what's worn and replacing with clean, if there is any.

And you spend hardly anytime with your daughter. Who now straight up tells you, you're her mom but not like a mom mom..more like a grandma.

What we are going home to, is a completely different home.

There are so many things of Kilians scattered around the house. Jammies and stuffed animals and pictures and decorations from his rooms in the hospital. Folders filled with information on how to grieve the loss of a child, how to speak to siblings about loss, funeral home paperwork, medical bills, diapers given to us, drawings on paper explaining anatomy and procedures, drawn by cardiologists and ENT's and physicians and surgeons.

Before we left for up north, I emptied out one of the tote bags filled with all the goodies of the hospital. I didn't even think about it, but the minute I started to pull things out, the tears came. This is what's left of what could have been. Blood pressure cuffs, medical bands, hospital pump parts, so many orange parent ID badges. And prints, of his little hands, and his big feet. Mother's Day spent in the NICU cards and wrappers from oral swabs..and it just hits you, that this is it. This whole thing stopped just as quickly as it escalated its start, and you feel yourself begging to understand what happened.

39 days. We had thirty nine days with him. It felt like a lifetime, and it felt like the blink of an eye. Slow moving time to be ended in a instant. A life holding so much value, but such little opportunity to share it.

I sleep with his blanket - the one that covered his isolette he used to sleep in. Every night since the day he was transferred from the warm, safe haven of the NICU to the scary reality that was West 3. My attachment to this blanket is less than mentally healthy, and I try not to think about the first night I will inevitably have to fall asleep without it.

I take the little tassels between my fingers, and soothingly rub them as I did to Kilians little hand. I can almost feel the baby softness of his skin. I can almost feel the softness of his blonde hair, I can still smell him.

And I live in those moments. Those minutes. Those eyes. I cling to everything I can remember about him and am constantly searching my mind for more. More Kilian.

Those memories are carrying me thru. It has been said, that it is better to have loved and lost, than never to have loved at all. I am, because he was. I gathered as much love for Kilian that I possibly could, in hopes that it would save him. It looks different than I imagined, but it worked. His soul was set free, and, in the best way, that sets my soul on fire.