Nitty Gritty Dirty Grief

Hush Little Baby….

I have never been one to connect with the afterlife.

But when we lost Samantha, there was no doubt in my mind that she had nestled herself in the inner-most workings of my heart.

And that was where she lived.

And I was fine with that.

But tonight, when I was doing laundry for our ski trip, I noticed a red, flickering light from her room.

So I went in and saw one of her bears flickering… reason for it….just flickering….

I sat down by this bear and asked him what he wanted.

This was Jack’s bear, given to him by his Grandma Lyn. When we found out he would be born still, I found Grandma Lyn in his room with that bear.

“I thought I was okay until I held this bear,” she said. And she tugged on his leg and he started playing ‘Hush Little Baby’.

Tonight I picked up this bear and randomly it started playing ‘Hush Little Baby.’

‘Hush Little Baby’ was my favorite lullaby’s for Samantha. I would make up my own verses.

“Hush little baby, don’t say a word, Mama’s gonna buy you a she-she-gurd.
And if that she-she-gurd won’t screech, Mama wants a house on a Malibu beach.
and if that Malibu beach is too pricey, Mama thinks Cashmere is very nicey….”

And so it went on…..with Lil Miss at un-godly hours.

And so tonight, I embraced Mr. Bear, with his flashy colors and lovely lullaby’s. I told him I had seen too many horror movies and if he was a crazy bear trying to connect with me through the demon world, I was hooked.

I also told him he was forever saved from the Goodwill pile.

I often look for signs from her even though she lives eternally in my heart.

Poor Bear, I will now always wait for his little lights and ‘Hush Little Baby’ song. He had no idea what he was signing up for.

Nitty Gritty Dirty Grief

For the Love

When we lost Samantha, her Grandpa Jim confessed something….
“You know what I will miss?” he said, “I will miss nights in the hospital with you all. Not when she was really sick, but when she was better, when we knew you would get discharged and we all just hung out in that little room together.”
I get it.
I miss those nights too.
This week is the Alice 24 Hours For Kids, a 36 hour telethon for Children’s Hospital Colorado. It’s a great telethon that always tugs at my heart strings and makes me think of Samantha.
We will never, ever be on the 8th floor.
And ironically, that breaks my heart.
I would love to be on the 8th floor again. Heck, I would love to be in the PICU again.
But we won’t…..ever.
And yet I am still passionately involved with this hospital; this hospital that houses my love, my hope, my grief and my memories

Today we had a great Mitochondrial meeting with the TCH team and I felt a drive and a commitment that is only triggered at this place. A feeling that I can help, even if only a couple families

After the meeting, I waited with Maria and Jacob and lovely Gemma for their radio debut. Our fabulous Dr. E came by along with our other wonderful nurses and I felt a sense of belonging…..
At Children’s Hospital, without our child, I felt a sense of belonging.

And maybe that is the connection…..those who knew her so well. Those who knew me when I could place a cath under a minute, when I could blend a mean keto shake on the 8th floor….my fellow Samantha warriors.
It is a bittersweet place that has nestled itself in the marrow of my bones.

But I guess if anything is going to nestle, it should be people like this.

My fellow warriors…..good job today. You can nestle anywhere.

Nitty Gritty Dirty Grief


18 months ago we started a small non-profit in memory of our daughter.

As we planned our marketing strategy, we joked that we were ‘No Susan G. Komen‘ and someday hoped that we would be.

Today, I’m not so sure.

Today, I think there might be something nice about being tiny and slightly obscure and helping in small steps were we can.

The interesting thing about non-profits, especially medical non-profits is that they are emotionally charged, as they should be, lives are at stake.

Susan G. Komen’s decision to stop funding Planned Parenthood did not enrage me but it did surprise me. I looked at it as a PR nightmare and I immediately made a donation to Planned Parenthood.

Because as a non-profit, as a private enterprise, Susan G. has the right to endorse or not endorse who they want to. As a return, I have the right to sponsor or not to sponsor who I want to.

But honestly, the whole thing makes me sad.

Because people I love have this disease and it doesn’t care about politics, or women’s rights or Roe v Wade or who is liberal or conservative. In fact, it is slightly color blind and does not recognize pink.

Perhaps (as odd as this may sound) we have made people over-aware. We think that by buying a pink, frozen pizza, we have done our good. That by NFL players donning pink socks, everything is okay. That millions and millions of endorsement dollars are going to this foundation….an army of pink ribbons fighting this battle.

But talk to anyone going through this and it is not all good. Words don’t describe how not-all-good-it-is.

Susan G. has transformed the support for breast cancer. They have created communities for women going through this; support and guidance- letting people know they are not alone. And everyone, everyone knows the color pink.

Now it is time for Susan G. to stop painting the town pink and stop trying to see what new snack food can develop packaging in a lovely shade of rose. Perhaps now is the time to remember why they started on this road in the first place, to offer help…..for everyone.

I think I’m happy with us being small and slightly obscure….