Life Today

Snowman Cake

My mother called a couple months ago….

“I want to tell you something but I don’t want to make you upset,” she said. 

“You know that is not the best way to start a conversation.” 

There was a pause on the other end…..”Jack talked to me last night.”

“Oh,” I said. “How come he tells you things but he never talks to me?”

“He thinks he will upset you.” 

“Well he should try me.” 

“He wants a snowman cake for his birthday.” 

My mom has this crazy way of talking to my kids. She comes back with these off the wall conversations that I have come to accept- and appreciate

And so I thought, Well of course he does! What ten year old doesn’t want a snowman cake for his birthday? Snowman cakes are delicious. That sugary, coconut frosting covering moist, yellow cake goodness? 

“So,” my mom continued cautiously, “I’m going to make him a snowman cake.” 

“Well yeah!” I said. “If I told you I wanted a snowman cake and you didn’t make me one, I would be uuuuppppppssssettttt.” 

And so… begins…..with a snowman cake. And I love that Mama is making him one. He is ten and Snowman Cakes, after all, are delicious. 

It is ten years. It is the eve that our lives changed forever. It’s a 48 hour time span that kinda sucks. I find myself looking at the clock, thinking of ten years ago…..I was taking a shower, I was driving to the doctors, I was checking in….I was……I was

Ten years is a heck of a long time. People get married, babies are born, people leave us. 

And ten years is time for healing….I still get sad and find it necessary to reserve time for my grief. 

But I think ten years ago, when my grief was so raw, when I was outrageously angry at the universe and everything it contained……when I felt my sadness could not be contained by my own skin. 

Ten years is a heck of a long time. 

I talked to my mom today. She has all of the ingredients for the snowman cake. 

“You should take a piece of cake and put it in Jack’s tree,” I told her. 

Jacks tree is a tree at my mom’s house that was seriously on it’s last limb ten years ago. They had called an arborist  to take it out. After we lost Jack, it grew one limb of healthy growth….and then another limb, and another. It is now a big honkin’ tree- Jack’s tree.

“Jack’s tree doesn’t want cake.” 

“It most certainly does want cake. Snowman cake is delicious. Why wouldn’t a tree want a delicious slice of snowman cake? ” 

Per Jack’s Mama’s insistence, Jack’s tree will have some snowman cake. 

And so begins 48 hours. Tomorrow, I attend a luncheon at Children’s for high dollar fundraisers. Children’s, a place I didn’t know ten years ago and now a place so ingrained in my soul. 

On July 1st, I will get up early, I will climb Flagstaff. I will feel my heart pumping blood and my lungs taking in oxygen and I will indeed feel a bit barfy…..that last switchback is a killer. 

But I will make it to the top feeling alive. Alive. Alive. Alive. 

Ten years ago July 1st, I did not feel alive at all. 

I drove home today and listened to a song by Wiz Khalifa….that’s right….Wiz Khalifa….I hang with the hip kids….

The song always makes me weepy…..but in a good thoughtful weepy…

It’s been a long day without you my friend
And I’ll tell you all about it when I see you again
It’s been a long way from where we began
And I’ll tell you all about it when I see you again
When I see you again

Happy Ten. 

Life Today

How Can I Not?

Last night I sat at the Awards Dinner for the United Mitochondrial Disease Foundation. A woman, a mom was being honored for her work with the UMDF. A couple years ago, her son was diagnosed with Leigh’s Disease, a horrible mitochondrial disease usually found in infancy. 

Doctors diagnosed her son at age 18. He is one of the oldest patients to be diagnosed with Leigh’s- yet another heartbreaking story we hear at the Mitochondrial Conference. She got up and said that people sometimes ask her how she can find the time to be so dedicated to this cause. Her answer was, 

How could she not?

How could she not be so dedicated to a Foundation that is fighting for a cause that is so complex and so devastating? 

And how could she not be involved when the work being done impacts her son? 

This resonates with me, as it always does at the Mito Conference. People thank me for still being involved even after we have lost Samantha and I think, well of course!

Selfishly, it’s one of the only times I get to talk unabashedly about my Sweet Little Miss. And I can use words like seizures, feeding tubes and ketogenic without getting a sympathetic or confused look. And honestly……How can I not?  How can I not? How can I not? 

Today I sat waiting for my plane home. I watched the current update regarding the tragedy in South Carolina. 

The irony, we fought so hard this week for the lives of our most fragile, our medically complex. We fought as a community, took our cause to Washington, we talked, we cried and we laughed. And I tired to soak in as much knowledge from our amazing, committed, doctors- doctors using their amazing intelligence to make lives better. 

People doing such good. 

While the headlines remind us that their are people doing such bad. And social media now reminds us that as these tragedies arise, we can be divided. 

I watched the news and thought, we are not this. 

We are still people doing good, people finding cures, people communing, providing comfort and hope. 

And so how can I not? How can I not? How can I not?