Thursday, September 22, 2016

Show Up

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. 









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