Along the way you meet some really good people doing some really good things…….

This is my friend Tami

Almost two years ago, Tami lost her baby son Landon to a mitochondrial disease called Leigh’s disease. Tami decided to organize a walk in memory of Landon and to raise awareness about mitochondrial diseases. The walk is called Landon’s Hope.

Saturday marked the second year we have walked for Landon. Tami has raised over $10,000 for the United Mitochondrial Foundation from her two walks. Sadly, this year we also walked in memory of Landon’s friend Maire who also had Leigh’s disease and passed away in August.

You would think this event would be sad but it’s really not. It’s hopeful and empowering. It’s fabulous to see these moms doing so well and doing something to raise awareness. It’s especially nice when you walk with a friend……

And talk about our kids, mito complications, medicine, life and perhaps another mito walk in the fall?

Today we also had our family support group picnic. Samantha met a new friend Calvin, who also has a mitochondrial condition.

Calvin was quite taken with Samantha, sat by her side and kept wanting to hold her hand. Samantha’s not great at reaching up to grab things but with a little help, Samantha and Calvin held hands for a little while.

I love these kids. And I love what they teach me.

It has been quite a 24 hours……

We have been struggling with seizure control for the last ten days. Samantha would have a cluster of seizures, we would give her rescue meds, she would sleep for a day or two and then the seizures would come back.

This is no fun for anyone.

So yesterday when the seizures started up again, our neuro and I decided we would take her to the Emergency Room, give her a hefty dose of Dilantin, stop the seizures and go home on a new seizure protocol.

That was the plan.

It was a good plan and it involved us only being at Children’s in the afternoon while we did the I.V. med.

But Samantha’s seizures had a different idea and by 8:00 last night it was clear we wouldn’t be going home. When the seizures continued after two doses of Dilantin, two of Ativan and an EEG, it was clear we would spending the night in the PICU.

So, we hunkered down for the night and I prepared myself for another weekend at Children’s.

BUT, today the seizure activity has calmed down, her heart rate and oxygen levels have remained stable and our trusting neurologist has decided that the best place for Samantha to be is home.

So, we are going home! We have never been discharged directly from the ICU but I am not arguing. We are packing up, tip-toeing out of here and keeping our fingers crossed for a quiet, non-eventful weekend.

Hope you have the same 🙂

Today is my day to post for Hopeful Parents. You can read it here or check me out there!

“How is Samantha?”

I never answer with ‘she is good’ or ‘she is sick’, I always preface my response with ‘today she is good’, ‘we’re having a rough time of it today’.

Because our life changes like the direction of the wind, what is comfortable one day is painful the next. A protocol that works like a charm one week just might not work once we hit Monday.

We have no control.

This variable lifestyle has made me a tad nutty.

And a bit superstitious.

I knock on wood. Seriously, if something is going well for Samantha I will say, “Well we have seizure control today, knock on wood.”

If wood is not available to me from where I am, I will stop the conversation, I will get up, find a door, or a cabinet, any piece of wood and knock on it. If I can’t get to wood, because I’m holding Samantha or caring for her, I will tell the person I’m conversing with to knock on wood.

And I’m serious….knock on wood.

When Samantha was in PICU, a friend dropped off her son’s lucky blanket that he had in the PICU. Another friend brought in a stuffed monster, because her son has monsters for good luck. We have crosses, angels, messages, stuffed animals, prayers, amulets, charms and lots of wood knocking.

We live in a world that tries to control so much. We know the weather five days in advance. We flip a switch and we have light, heat, cool air, water….

But when it comes to our children and their illnesses, we really don’t have a whole lot of control. Their little bodies are calling the shots.

So, like our ancestors, who didn’t have 24/7 radar weather, who looked to the horizon and asked I wonder what today will hold? Will it be calm? Will there be a storm? Will my crops survive? Perhaps we need a rain dance. We too approach each day looking to the horizon, wondering if we need to prepare for the next storm. Wondering what amount of knocking on wood, lucky blankets and monsters will help our precious little Peanuts make it through another day or at least make us feel better, feel as though we have some tiny element of control.

And yes, I have made up own anti-seizure dance, while of course, tapping on some poor piece of maple.

What is your superstitious ‘thing’? What do you do for an element of control?