Day 23

It was a super windy Saturday here today. It seemed that every gust of wind carried with it a new emotion. I’m thankful to be back here to sort it all out.

We slept fitfully, as Benjamin woke up many times through the night, including an hour or so during which he couldn’t get back to sleep. His tummy hurt him to the point of tears. This is a common side effect of vincristine, the chemotherapy medicine he was given yesterday. We just can’t predict from week to week what his reaction to this medicine will be. At around 3am, we gave him Zofran for the first time since he was released from the hospital. He slept. When he woke, it was the first day in weeks that he didn’t head straight for the kitchen, but rather for the couch, a blanket, and a favorite pillow.

Before too long he was ready for a Benji-sized Saturday breakfast. Around here that looks like jalapeno cheese grits, sausage, biscuits and eggs. His mood improved as the sun grew high. After a midday nap, he asked for one of his favorite activities–a Saturday lemonade stand. He timed it perfectly. Neighbors, friends and family all happened to converge on Clematis Street at once as he was waving his lemonade sign proudly and pouring the sour drink into paper cups. The wind felt wonderful. Benjamin felt normal.

Later in the afternoon we welcomed a sweet friend to our home to give the boys professional haircuts. He’s a terrific stylist and a kind man, and when we knew that Benjamin would lose his hair, we thought of him immediately. Like most children–probably most cancer patients–the hair loss is one of the things Benjamin has been most nervous about. We’ve gotten many conflicting reports on when to expect this to begin, but as fate would have it, only yesterday did Benji’s black t-shirt start to show several blonde hairs instead of just one or two.  I don’t think he had even noticed them yet, so in our eyes, the timing was perfect. Both boys were well overdue for cuts anyway.

Our intention in scheduling the home visit was two-fold: a.) to avoid any infection or exposure a busy salon would cause, and b.) to give Benji a familiar cut and possibly lessen the trauma of seeing larger clumps of hair on his pillow in the coming days. Benjamin’s disposition during the process was eye-opening for me. He was distant. He was uncomfortable. It could just be that he was tired after his busy shift at the lemonade stand–but I think maybe he saw this experience as just one more out-of-the-ordinary procedure to accommodate his new label. He saw me sneak some of the fallen gold into a ziploc bag. He knows what’s up. It annoyed him. Our friend was incredibly empathetic, and did a stellar job. Banyan and Benji look even more handsome than usual. Ultimately, I know we’re all relieved this step is behind us. It’s one less thing to wonder: how will the hair fall out? What will it look like? For now, at least, he has a sweet Benji buzz.

Among today’s many blessings included gifts delivered by mail, by car, and by bicycle. A meal for tomorrow and a pie for today. New shoes and new dishes. Wildflowers, a handwritten poem, and a package for our baseball lover. One of the most amazing gifts through this has been friends who’ve connected me with other mothers of children with the same diagnosis. Today, I finally spent some time via email and social media taking advantage of these connections. I was added to an online group of mothers with the sole purpose of  navigating complementary therapies for children with cancer. It’s what I’ve been searching for for three weeks. As I was scrolling through the messages, so many items on my list of things to research–frankincense, chloryphyll, gelatin, turmeric–were discussed. I am so grateful for other mothers to collaborate with as we cull through the woefully nonexistent science on these modalities. It offers a measure of control I’ve been desperate for.

As Benjamin was sitting through his haircut, he had calamari on the brain. Not just any calamari, but the one from our neighborhood restaurant down the road. Truth be told, he started talking about it last night. He didn’t want takeout. He wanted to sit at the glass topped table and share calamari with his family like he’d done dozens of times before. I hesitated. The only restaurant we’ve been to is the Mexican restaurant in St. Pete; we sit outside, we bring our own sanitizer, we see other children with hospital bracelets. Alternatively, our neighborhood restaurant is intimate, and almost always results in an unexpected encounter with a familiar face. But it was obvious after the events of the day–after the events of these last three and a half weeks–that Benji was desperate for normal.  For a lemonade stand on a windy Saturday. And for calamari.

After our meal (and a slice of peanut butter pie with four forks), we walked out of the restaurant into the Sarasota Saturday sunset, holding hands as we crossed the road. Everyone was smiling. One of the online moms I’ve met has this to say as she signs off from emails: “Life is not about waiting for the storms to pass, but about learning to dance in the rain.” I think that goes for windy days too.

6 thoughts on “Day 23

  1. The thought of Benjamin the Brave losing his hair brought tears to my eyes. May the strength you have all shown so far continue to guide your path.

  2. Laura: Your quote at the end: “Life is not about waiting for the storms to pass, but about learning to dance in the rain.” reminded me of one of my favorite Yiddish expressions: “As men gevaynt zikh tzu di tsuris, tanst men mit zay in froydn.” I may not have the Yiddish exactly right, but it means: “When you get accustomed to your troubles, you dance with them in happiness.”

    Love, Sonia

  3. Hi! Benjamin and family,
    We are praying that every day you get better and better. We love you and miss you a lot.

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