September 2016 – Samsmom

It is Mitochondrial Awareness Week.

And you know I and I know you…..are aware of your mitochondria every single day.

It’s tough to give insight just on this week…..so I thought, what about those who need a little insight?

What would I tell someone whose loved one, whose friend, was new to this mitochondrial journey?”

So here is my top 5- please note, the collective ‘we’ is just my opinion on the mitochondrial community, the community may disagree at will 🙂 No harm, no foul.

Anyway, Top 5:

1. Show Up:

Know that we might not show up back.

Please don’t take this personally, we are in the midst of a health crisis and we might not ever, ever acknowledge that you showed up but we know, and we remember. And we love that you showed up.

When Jack died, A neighbor whom I had never met showed up with a chicken, a delicious roasted chicken. She cried as she dropped it off. I don’t know her name but I will remember her sweet face forever.

She showed up.

Ring the bell and know that we might be home but just cant answer….perhaps because our child is seizing, or projectile pooping on the wall five feet away, or maybe they are doing none of these things but we just got two minutes of peace and have fallen asleep.

Show Up

2. Show up with a good story:

You are 30 minutes late to the hospital. Traffic was awful, your boss is pissed and you had a fight with your son.

Leave it. Before you enter our hospital room (or house) take a deep breath and know that whatever horrific crapiness happened today, it was probably better than what we went through.

One of the very best hospital visits was by a friend who dropped off a meal and told us how he had fallen completely in love. It was awesome- there was not a problem in the world!

Such great energy after a crappy day. Find a good story, dig deep if you have to but find something good to tell.

**Caveat….if it is a great story about your healthy kiddo and you are going to visit a mito kiddo…save that story for later….maybe tell a story about a beautiful butterfly you saw in the atrium, even if you didn’t….little white lies are awesome.

3. Know that we will Change:

Of course we will change! Everyone changes. And change is not always bad. The circumstances that brought us to this change are bad…..but respect the person we have had to become.

That person is awesome, and tough as nails, and strong as hell and lippy…..respect is the operative word.

4. Do Not Be Afraid:

Okay, that one is kind of stupid, Because of course you are afraid. We are all afraid.

Anyone dealing with mito is scared shitless. But don’t be afraid of the person- the person is lovely and vulnerable and maybe just wants their feet rubbed.

The very best people were the ones who just embraced Samantha for her smoochiness…..lines, oxygen, seizures and all.

A friend and I once gave a very stinky Samantha a bath in the hospital. She was so sick and so stinky. And the way we worked to clear lines, tubes and wires was beautiful, all to bathe my child…..

I will remember that moment forever- just like the delicious chicken.

5. Let us Cry, or Laugh, or be Horribly Inappropriate:

We really do know that rectal Valium is outside the realms of what is polite dinner conversation.

We know that when we have to explain to the nurse that the stain on hospital sheet is not really blood but Cabernet; that there might be issues.

We tell you these stories not so that you feel bad or take pity on our life but because this is our life. Our amazing, terrifying life. A life we would have never, ever chosen but a life that the more we embrace, the more beautiful and scared it becomes.

We know Mitochondrial Awareness week is overwhelming. Even the name Mitochondrial……sounds so formal. And the fact that there is no cure or therapeutic treatment makes the word Mitochondrial absolutely terrifying.

A lot of friends will jump this crazy ship and I can’t say I blame them but, in the words of some unknown author,

“The World is Run by Those Who Show Up.”

I love that this quote is about showing up but we don’t know who to credit the showing up to…..

Maybe that’s the point about showing up, no one has to remember that you were there but you know, in your heart you know and that made a difference.

Show up.

Yesterday kicked off Mitochondrial Awareness week.

I am a day behind in making you aware of the importance of your mitochondria.

But if you know me and you know my blog, you know that mitochondrial function is pretty darn important.

Love your mitochondria.

Seriously, right now….take that thigh in your hand, give it a little wiggle and say “I love you little mitochondria, yes I do, yes I do, yes I do.”

Because sometimes you don’t know what you got until it’s gone.

When we lose something, we feel so vulnerable.

We feel it in the simple little things, where did I put my phone? Did I leave my wallet at the restaurant?

And those suffering from this disease feel it in the ginormous things, I can no longer feel my feet, my baby cannot make eye contact, what the freakin hell has happened to our life?

It is hard to be vulnerable.

On Saturday, I volunteered at our Community Food Bank. I did it as a favor and grumbled through the day until I showed up to help serve the Saturday meal.

If you have never done this, you should. It’s kind of awesome. You are there to do the most primal of gracious acts…..to FEED someone a MEAL.

At 2:20 we started pulling out desserts, cupcakes and cookies from Krogers and Safeway that had expired. At one point an entire birthday cake was pulled from the freezer and sliced up.

Meals on Wheels brought spaghetti and meat sauce for 50 at 2:30. Food was served at 3:00; so we started to heat things up.

At 2:40, there was a knock on the door….a door which I happened to answer.

“Can I come in?”

I didn’t know…..it was 2:40 and we don’t start until 3:00….so I asked someone else…

“Can he come in?” I asked

“We serve at 3:00.”

“I’m sorry,” I said, “We serve at 3:00.”

“I just want to sit. They usually let me come in and sit.”

Oh for pity’s sake!

“Yes, please…..please come in and sit.”

And so this man came in.

And sat.

And then got himself a big stinkin bear claw.

As people filed in, some collected loaves of bread for later. Some coveted several desserts. One man went into the bread pantry and got a whole loaf of Safeway buttered garlic bread, sat at a table and shared slices with his friends.

I have always wanted to dive head first into a loaf of Safeway buttered garlic bread.

I was a tad envious.

We fed 65 people on Saturday. Not bad for our little town of Loveland. Some were crazy gracious. Some wondered where the Parmesan was….how the hell can you serve spaghetti without Parmesan???

I have no idea

Some seemed in good shape, others not so much.

Some came, ate and left, others stayed, roamed from table to table with a cup of coffee and a piece of leftover birthday cake.

We ran out of spaghetti, had to reheat the meatloaf and finally onto the chicken ala king.

note; get to the community kitchen before the chicken ala king. I beg of you

The kitchen also gives out snack packs to those who ask. One man asked for a snack pack, “But make sure the drink is Capri Sun, none of that Kool-Aid Crap.”

I wholeheartedly agree

It sucks to be an outlier in our society. We talk tolerance, we talk diversity but to live as an outlier can be horrifically isolating; whether you are homeless, impoverished, disabled…..it’s not so fun to be on the bad end of the bell curve.

So on this week of mitochondrial awareness, I ask you to give us a seat at the table, let us in early, listen to our stories and feed us a bear claw. We are a community shouting to be heard: grieving, under represented, searching desperately for a voice and so amazingly beautiful

And in the words of the fabulous Berne’ Brown….what makes you vulnerable makes you beautiful

I leave you all a Kroger pastry and a world void of chicken ala king.