Day 313

Benjamin woke up last night just after I fell asleep. Usually when this happens he crawls into bed with us. Last night, he climbed back up into his own little nest.

I was up before the sun to walk the bridge in a fine, misty rain. I was tired; for some inexplicable reason, I thought of Hudson’s sparkly eyes last night for hours. Perhaps enough time and crises have passed in our own story to allow myself to open my heart. The feelings came freely. I sent a message to Hudson’s mother full of inadequate words.

Benjamin was the first to wake when I returned from walking. His tummy was a little upset but it resolved quickly. Both boys got ready for school; Michael took Banyan and I took Benji. Even though I’d have to pick him up after less than an hour of morning work, we felt it was important for him to be there. Today’s appointment, we felt, should be treated like any other kid’s doctor’s appointment. Normal.

We were a little early at All Children’s, and once again, I was binder-free. We knew that Benji’s buddy Cody would be there today for his monthly chemo and lumbar puncture. When I told Benji that Cody was having an LP today, his instinctive reaction was an “Awww!” with an earnest empathy few could understand. We saw Cody’s name on the list a few spots above ours, and Benji walked right over to the locked clinic door and knocked on the glass window. When one of our nurses answered, Benji asked, “Is Cody here?” as if he had just arrived at the kid’s house. The nurse said yes, and Benji asked to go see him.  She chuckled and said she’d have to check with Cody’s mom. Seconds later, they called us back, and we reunited in Cody’s exam room as he was finishing up his intravenous chemo. It was so good to see him. His sweet face was glowing and his new hair is gorgeous. We showed him the thin layer of peach fuzz that is returning to Benjamin’s head–it’s growing back too. Cody’s mom and I hugged and could have chatted a lot longer than we did. It felt so good to see them, still walking a few paces ahead of us on the path, their light shining so brightly.

Benji had a finger poke today to check his blood counts. Nary a flinch. While we waited for the lab results we played with bouncy balls in the halls until we got chastised, then moved to an exam room. One of our favorite nurses and Dr. Oshrine came in to see us. Benji was very excited to see his favorite oncologist, giving him many hugs and invading his personal space repeatedly–but Dr. Oshrine was understanding and happy to see him feeling so much better. We talked about Benji’s preference not to have the inhaled Pentamidine again. Their consensus was that Benji’s Thursday night wheezing episode was unrelated to the antibiotic, but it mattered not to me. He didn’t like it, and there are other equivalent options, so he won’t be having it again. Once we received the lab work, it was a moot point; Benji’s absolute neutrophil count, platelets and hemoglobin are all perfect and strong. He can return to Septra on the weekends next month.

We made our next appointment and were on our way. I grabbed lunch for Benji and he rejoined his classmates on the PE field. Once I picked both boys up from school and homework and snacking was underway, I gave Benjamin his weekly oral Methotrexate–eleven tiny yellow pills. I’d talked to Cody’s mom about her timing on this, and she felt Cody handled the medicine best with food. Dr. Oshrine didn’t have a preference. And since I knew I wouldn’t be home tonight, I thought it would be nice for Michael to have to deal with two pills instead of thirteen.

Yes, tonight I was treated to a play by a dear friend, who bought me tickets for my birthday. She’d remembered that The Color Purple is my favorite movie. A local theater company is performing the play, and it was absolutely fabulous. I was in tears by the first scene and again several times throughout the evening. It so was nice to be out, nice to be with a sweet friend, nice to be moved to tears without fighting them back.

“The more I wonder, the more I love.” ~Alice Walker, The Color Purple

 

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