Day 400

day 400

Day 400. True to form, I will report that in 400 days, Benjamin has had:

• 1 surgery to place medi-port
• 3 bone marrow aspirates
• 16 lumbar punctures
• 16 doses of intrathecal chemotherapy
• 60 doses of intramuscular chemotherapy (shots)
• 62 doses of intravenous chemotherapy
• 205 doses of oral chemotherapy
• 113 doses of steroids
• 254 doses of antibiotics
• 19 blood transfusions (platelets and red blood)
• 89 (northbound) trips over the Sunshine Skyway
• 55 nights in the hospital

…but today did not include any of these things (except two and a half mercaptopurine pills). Today was about “shaking off the perfect.”

I walked the bridge this morning with a good friend who makes me laugh uncontrollably, from my belly, in the best possible way. The wind was fierce. I was still feeling all of the heaviness from yesterday’s contact with new cancer families and I was relieved for the strong, cold expungment.

Today would have been Michael’s father’s 71st birthday, so lunch and dinner were celebrations of a great man’s life. We celebrated lunch with Benjamin at Southside, and dinner with everyone at one of Mic’s favorite restaurants. In between, I visited Benjamin’s classroom to help his teacher lead a group crafting project.

As Mrs. Smith was giving the class instructions, she cautioned them to be gentle with themselves. “Shake off the perfect,” she said. I loved this. As Project Rainbow Star moves forward, this is a lesson that comes back to me again and again. There will be rectangles that aren’t folded exactly, or holes that aren’t punched in the “right” place, but the perfection is in the imperfection. It is in the intention. Shake off the perfect. 

After we picked Banyan up from school, I took the boys to my sweet friend’s birthday party. It was for her son, who turns one on Sunday. Naturally, all of the other children present were much younger than my boys. The mothers there were very happy to see me, which made me feel so good…but my boys were a little crazy, and my ego interfered with my judgement. I thought they were not behaving as well as they should have been at a social gathering. Mrs. Smith’s words came back to me. Shake off the perfect. When I abandoned my need to be perfect, I could see that my boys were having fun. They were helping other children much younger then they are, and creating ripples of laughter throughout the party. Shake off the perfect. Indeed.

We had a lovely dinner in Michael’s father’s honor. During the meal, I received a message that a mother in Sarasota just learned that her two year old daughter has the same leukemia that Benjamin has. She is at All Children’s now.  Several people have reached out to connect us. We have been messaging back and forth all night. I am brought back to the fear, the shock, the guilt of those first few days. I asked Benjamin what I should say to this mama. He said to tell her, “Don’t be scared.” So that’s what I told her. I hope to give her much more wisdom, and probably a rainbow star, in the coming days. For now, I wish I could just wrap my arms around her and repeat Benji’s words. Don’t be scared. I also told her, and her friends that reached out to me, to watch out. Because this little girl is going to blow them away.

2 thoughts on “Day 400

  1. Laura dear:

    But is it true to say to this mother, “Don’t be scared”? What about that young boy who was friendly with Benji who died?

  2. Sonia, of course, I have been intimate with fear throughout these 400 days. But I have learned (for the most part) not to attach to it., because it’s paralyzing. It restricts movement. So I acknowledge it, use its fuel to fire action, and then send it on its merry way. I will share this with my new friend also, but I wanted to pass on Benjamin’s exact words last night. They gave her comfort. I know she understands the reality of the potential outcomes, as I do, as you did, every family grappling with this does. I just find it extremely counterproductive to feed the fear.

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