The Tortoise and the Hare...our life in the PICU

Do you remember the story of the Tortoise and the Hare?

There once was a speedy hare who bragged about how fast he could run. Tired of hearing him boast, Slow and Steady, the tortoise, challenged him to a race. All the animals in the forest gathered to watch.  Hare ran down the road for a while and then and paused to rest. He looked back at Slow and Steady and cried out, "How do you expect to win this race when you are walking along at your slow, slow pace?"  Hare stretched himself out alongside the road and fell asleep, thinking, "There is plenty of time to relax."  Slow and Steady walked and walked. He never, ever stopped until he came to the finish line.  The animals who were watching cheered so loudly for Tortoise, they woke up Hare.

Hare stretched and yawned and began to run again, but it was too late. Tortoise was over the line.

After that, Hare always reminded himself, "Don't brag about your lightning pace, for Slow and Steady won the race!"

This story may become my mantra...slow and steady wins the race.

Today epitomized the idea of slow and steady. To many, it would seem uneventful. Javad slept for most of the day...a side effect of the phenobarbital, one of the anti-seizure medications he is on. Small pieces of him emerged when we did things he didn't like...suctioning his nose (which he hates), stretching his legs (physical therapy is so mean...lol), and moving him out of his comfort zone gave us a grouchy face for sure. I am both happy and sad that we caused him to be grouchy...happy that he is showing up and sad that we're making him sad.

The next few days (weeks, months) will be like this. We will be doing things he doesn't love and he will be a grouch, but this is what we need...Javad making his way toward the finish line...being a turtle. Ironically the animal that represents the PICU is a turtle...maybe this is a subliminal message to all children and families on this floor...slow and steady wins the race.

Each day we are here I am learning more. It is interesting that after thirteen years we can be in a space of learning something new. I have never thought much about brain waves or EEG's, but now I find myself fascinated to learn more about them. We were told today that Javad has a definite difference between sleeping brain waves and awake waves, which is encouraging. It confirms all the things that we know are true...our boy is there, just buried under seizures and, now, medication. He will emerge, in time...in his time, as always.

My heart is warmed by the community around me, people that are showing up in our time of need. On Facebook my wall is filled with giraffes, Javad's spirit animal, and the strength I feel from the pictures is immense. I had some unexpected visitors today, Meredith, who brought me a chai, Chris, whose thirty year old son has MTM, and my dear friend, Rodney, from Reynolds, where I work. It's amazing how a visit (and some cream soda!) can improve one's day.

 Although this week is not what I expected, I remain hopeful. Talking with Rodney tonight reminded me why I do what I do. It made me think about the kids that I love working with and the impact that I want to make. I am reminded of the road my family walks and that, from the outside, it is challenging. Although I, at times, brush that away, it is true that we walk a road that has an emotional and physical toll and we need to care for one another.

I know that this is not a journey of speed, but rather a journey of persistence and endurance. We have been on journeys like this before...we have met the challenge. It is time to walk by those who are slumbering and continue on the path that has been given to us. We will beat this opponent, as we have succeeded in the past. We know the work that is required and we rise to the challenge.

We are ready...slow and steady wins the race and we are definitely in it to win it!