Samsmom: Life, Joy, Loss and Loving your Mitochondria

My latest new word is terrible.

It rings well.

 The ‘T’ is sharp. It is significant without being confrontational,

The double r’s can be rolled if needed

And the last ‘ble’ leaves room for a long-winded ‘buulllll.’

Say it long…….tttttteerrrrribulllllllllll

Say it again: terrible, terrible, terrible.

It’s nice, isn’t it?

I posted on Tuesday that it was a terrible day.

Some days need to be terrible.

And that’s okay.

And thank you for those who have reached out regarding my cryptic Facebook post.

Tuesday was lined up to be a tough day. My Bro is struggling with his mitochondrial disease, and we were asked to attend a palliative care meeting.

It was election day.  

I had a big work meeting.

Sometimes, I feel the need to test myself emotionally. Responsible Heather will look at my schedule, tell me I have taken on a lot and suggest that I move some things around.

Hold my beer Heather will look at the schedule, say ‘Giddy Up’, fill up a 48 oz coffee thermos and roll out without any pants.

Getting these two to agree is a constant battle.

And then there is my Bro.

Lordy. If you ask my state of mind, I will pause, laugh, and say it’s terrible. My heart breaks for my brother.

I hate this disease.

The other day I told my husband, “I hate that we are here again.”

“But we never left,” he said.

It’s true. Bro’s mitochondrial symptoms emerged in 2008….almost 16 years ago when Sammers was still here…..the long and winding road.

We met on Tuesday at the Franklin Medical Center.

I have said this and will continue to say this…..Palliative Care Meetings at the hospital are the worst! The chairs are terrible, the Kleenex feels like cardboard, the bathroom stinks of antiseptic and poo.

Why can’t we meet at a pub and cry over fried pickles, chicken wings, and proper tissue?

No, we met in a sterile conference room on the 4th floor of the Franklin Medical Center. I marveled at my Bro and my SIL, explaining super-hard decisions, situations, and care for each. This disease is taking control of my Brother’s body, and we cannot pretend otherwise.

I held my Brother’s hand and cried.

I left declining lunch. I had a super important business meeting. I tried to pretend I was super important but really got in my car and cried (again).

For the record, crying in the car is the best. I recommend it quite often.

In my super important meeting, it was announced that we had lost a big client, a client of mine I’d held for seven months.

A client that was given to me with confidence and a side note, “This is yours, don’t f*ck it up.”

I lost it. I f*cked it up.

It’s hard when you f*ck things up.

I remember the first time I saw my Bro. He was swaddled on my grandparent’s bed. For all the times everyone promised me a fun baby brother or sister, he looked like a tiny little, squirmy walnut.

I was handed this tiny little person in 1974 with perhaps the same message, “Hello, Big Sister, here is your Baby Bro, don’t F*ck this up.”

I have two caveats: 1) it was 1974 and someone really might have said that while they served us a baloney sandwich and tossed us in the backseat of a station wagon with no seatbelts while singing John Denver. 2) I must pause and acknowledge that my last two posts have involved extensive use of the ‘F’ word….but stay with me

And hence, the terrible, awful Tuesday. I lost an account. I am losing my Brother.

What was crazy is that once I learned about the business account, I started crying. Sobbing. Stupid business that I had no control over, while I walked out of the palliative care meeting perfectly composed.

My friend put it in great perspective, “You can process losing an account, maybe everything about that day could be rolled into what you could process.”

I came home. I cried and held my husband, and then I went to Costco.

Have you ever been to Costco when you are really sad? I bought two puffy coats and twenty pounds of cheese. It was somewhat therapeutic. Come over any time- you will be warm and constipated.

I came home and watched Trump win. And I watched the Republicans take the Executive, Judicial, and Legislative Branch.

And my heart broke a little more

I say this knowing my audience, and many of my loves voted differently than I did.

I say this as a woman who gave birth to a stillborn baby, knowing now if I lived in places other than Colorado, I could have been convicted of murder.

I say this as a sister whose Brother has a rare disease, not knowing how we will support public health and rare disease research to a new cabinet that does not trust vaccines or science.

I say this as an auntie who will storm the field for my Littles.

I will be back. I am back. Yesterday I went to my OB/GYN. After a blood test, I was told I am now in menopause- so bring on the cats and the magic potions.

Tuesday was a terrible, awful day. But I know who I am. I know who I need to be. And in the words of Hold My Beer Heather…..Giddy Up.