Thursday, October 8, 2009


I am sometimes disappointed in myself. Being on this journey with Jacob, I should have learned to not sweat the small stuff. It’s just not worth it. I know that. Still I do sweat the small stuff.

“What am I going to do with my meetings this week without a nurse?”

“ What are we going to do with Jacob’s school without a nurse?”

“Why isn’t his nursing agency trying to give us a new nurse???”

“ I am hurting in my tooth, when will the pain go away?”

“ Sarah missed me last night when I was at a school meeting. Maybe I should have stayed home?”

“ I would like to go out for dinner tonight, but with Jacob having gone to school today, he will crash by 6 pm”.

“Oh, and I can’t really eat with my dry socket either.”

…and the list can go on, really?!

And then in a minute, your whole world gets real. None of the above matters at all. You’re in the ambulance with your son, and you have this knot deep in your stomach knowing that seconds matter, knowing that things can turn for the worse any, any second. Breathing in, breathing out. Staying calm, trying to still communicate clearly with everybody in order to make sure Jacob gets the care he so desperately needs. Knowing by the time you arrive at Children’s that all the plans for the week are out the door, and you really don’t care as long as your son will be ok. Not just ok - but fine, well, smiley, back to baseline again.

Why is it that I can still sweat the small stuff? It is almost as I want to do it. Maybe so I also have a foot in the world most people live in? Or is it simply that I can’t shut off this brain of mine?

I am thinking that we all need to remind ourselves that none of that matters. None. The coming snow. Missing a meeting. Being upset about a co-worker. A bad cup of coffee.

We waste our energy and too much of our lives getting upset over what are only annoyances. Will this really matter in a month, a year? Maybe a good way of looking at it is that life lessons aren’t something we can simply memorize. We have to relearn them over and over again. Remind ourselves of them, and what matters in life.

Things happen that make you learn. You love. And you know that nothing else matters.

And I know you all want to know how Jacob is tonight. He's still in the PICU. The oculogyrical crises have passed for this time. Versed has been stopped. The plan is to wait for the final flu results and 48 hour blood culture, but so far everything has been negative. He's doing ok, that's all that matters. I keep reminding myself that as I am sad that our nurse Shannon will be gone for 4-5 months due to her broken ankle, and Sarah not being a welcomed visitor at Children's thru April 15th (no children under the age of 12 including siblings) due to the bad flu season. She can't access any floors as of October 1st. It will be a long winter, but I will keep reminding myself of what truly matters in life.

Love, Maria.

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