Day 98

We stayed in Sarasota today. I sent more photographs of Benji’s dressing to Tracey in the Infusion Center, and spoke to one of our favorite clinic nurses as well. They all felt that our lowest risk option was to stay home. I cleaned the area and added more tape. I monitored for fever. I felt like this was the right decision–redressing an accessed port the day before Benjamin is scheduled to be deaccessed doesn’t make much sense, especially because the opening in the dressing was so small. But the “what-if’s” raised my anxiety level enough that it took serious intention to stay present today.

I did take pause this morning to give thanks for the many, many people who donate blood. Benji removed the bandaids that were still on his thighs from yesterday’s Erwinia shots. Monday’s shots gave him significant bruises–our sign that his platelets needed an infusion. After yesterday’s donated gifts dripped into his veins, today’s bandaid removal revealed zero bruising. Even the ones from earlier had disappeared.

We caught up on schoolwork in the morning and again in the afternoon, taking a midday break for another Pilates session with our neighbor Christina. I feel so thankful for this gift. Benjamin was nervous about the idea at first, but now that he’s experienced the equipment and Christina’s gentle, encouraging teaching style, he can’t wait to go back. It fills me with joy to watch his body getting stronger.

Schoolwork today was a struggle. After two days “off” and a week of low counts, Benji was finding it hard to focus. We pulled through and got all of his assignments checked off before Mrs. West’s afternoon visit. Halfway into her testing with him it was obvious he was having a hard time paying attention. He was sleepy, resting his head on the table, having to read and re-read passages several times to absorb them. At one point he started to cry, in front of his sweet teacher, because the tape on his dressing was bothering him so much. It was all I could do not to cry with him. I am grateful that we can afford breaks when we need them, and I need to remember to take them. I will be more mindful in examining whether staying “caught up” is more for Benjamin’s benefit, or for my own. His ability and skill is clearly there. That’s what matters.

When Mrs. West left, she delivered two more gift baskets from a sweet classroom at Benji’s school, one for outdoor play and one for staying in. Just minutes after she pulled out of the driveway, a friend pulled in with a delicious meal, her third for us this year, and some immune boosting goodies on the side. We received messages offering free organics and an idea for yet another fundraiser. On days like this, when dressing and patience unravel, I am more grateful than ever for feeling so lifted up by so many hands.

I worked a little this afternoon and will work a little more before bedtime, putting together a marketing package for Michael, who has a presentation tomorrow evening. Listing out my husband’s professional accomplishments during the years we’ve raised our sons is bringing me to tears. I feel so grateful that he has created this life for us, so that when we needed it most, I could stop everything and take care of our boy, just like I did when he was brand new, and his brother before him.

We will head over the bridge in the morning. We’ll get a complete blood count to ascertain immunity and see if Benji needs another transfusion heading into the weekend. He’ll get his Erwinia shots, and get his torturous dressing removed. The freedom of the weekend will be savored by all of us.

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