Day 453

day 453

The night sky before the sunrise was a deep indigo this morning, the same color as the water, almost vibrating. When my walking friend and I reached the top of the bridge on our way back, we were stopped in our tracks. We witnessed a celestial event the likes of which I have never seen. A quick Google search tells me it was possibly a meteor; it was a huge ball of fire with a long fiery purple tail, streaking through the sky with a slight arc until it disappeared. Much bigger than any shooting star I’ve ever seen. It was invigorating and powerful to witness. It felt like the day had told us a secret, and given us a wish to make.

Lunches were packed and children were bathed last night, so we had a jump on the morning. I made breakfast to order and spent time with each of my sons before sending them out into their academic worlds. Things felt smooth and easy, a rarity at that hour. I started tackling the Tuesday to-do list by mailing out a big batch of rainbow stars.

The rainbow star project has gained a beautiful, organic momentum. The requests are coming in at a much greater pace, but so are the offers for help, and the donations for supplies. Things just keep evening out; I’ll have a waiting list of names, then a volunteer will deliver ten stars. Or I’ll need to purchase more materials, and I’ll receive a gift of just the amount I need. This serendipitous balance is very reassuring.

After a quick and much overdue car wash, I came home, organized my space and my thoughts, and sat down to write. It was time. I have decided to stop thinking about how I will create the resource I wanted when Benjamin was diagnosed, and just start writing it. The how will come.

It started to pour as I typed. The rain was the perfect accompaniment to the sound of the keyboard, which fluctuated between furious pace and long, thoughtful pause. I completed three full pages today. It doesn’t sound like a lot, but I made it through an introduction, and the story of Benjamin’s diagnosis. I really allowed myself to go back to those two days of complete shock and overwhelm. I read every comment and text I could find from my friends and family. I put myself back in that long hospital hallway.

The walk to the conference room was hot. Constricting. I remember clutching my husband’s hand, walking through thick air a few paces behind the doctor, who turned to us over his shoulder to deliver three words, without breaking his stride.“It’s not good,” he said. 

I hope, just like the rainbow star project, that this writing will unfold organically. I want it to intertwine Benjamin’s story with the practical knowledge we’ve gained that can be of help to other families. I feel excited about the writing, and ready to watch this happen.

I allowed myself some time for a bit of research and housekeeping before picking up the boys. Banyan had intramural basketball practice after school, so I took Benjamin to the batting cages. He was absolutely slugging the ball, pitch after pitch. I look forward to tomorrow night’s baseball game. Banyan also had a basketball league practice tonight after dinner, and we all went as a family to watch him run drills, and to meet his new coach. It is so fulfilling to see the look of pure joy on my children’s faces when they are playing sports they love. Benjamin reminded me emphatically when we came home that it was Tuesday, and time for his Methotrexate. I know, buddy. But good looking out. 

My heart was also with several friends today experiencing their own cancer milestones. My friend with breast cancer had another surgery to remove infected tissue. Cody, Benji’s best buddy from treatment, had a lumbar puncture today, and his mama sent me a picture of a rainbow star she saw from outside the outpatient care center. Sophia, another All Children’s friend, had a bone scan today to be sure she is still cancer free. A new friend I’ve just met found out today that her daughter is in remission. And the newest little girl in Sarasota to be diagnosed with leukemia, Ava, went to the All Children’s Infusion Center today to get her second dose of PEG-asparaginase. This is the chemo medicine that Benjamin had such a severe allergic reaction to back in February of last year. His allergy meant he would have to have sixty Erwinia asparaginase shots in his legs instead of the PEG. Today, Ava experienced the same reaction.

I will never forget the day that Benjamin’s face swelled and his throat constricted and we called the nurses in to rescue him. He was given the maximum dose of Benadryl and Hydrocortisone and fell instantly asleep. I was so scared. Ava’s mama felt that fear today. She said she was so upset after Ava’s reaction, and had tears in her eyes. Then she turned and saw a rainbow star on the Infusion Center window. It brought a moment of brightness into a sterile and scary situation.

I can’t really explain how much this moved me. It solidified what I felt the need to do today when I started writing. I want to shine the light for those behind us on the path. When they are looking at a dark sky, and can’t even make out the horizon, I want to give them a bright, fiery star.

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