Day 491

day 491

It’s been a beautiful and emotional day. I’m grateful for this sweet white space. I need to shape words around feelings that have no names.

The weather has cooled off for the last time before the dog days of summer. It is absolutely perfect outside. I brought both boys lunch at their schools today and we all just seemed to relish in the perfect combination of Friday, cool weather, and being together. I spent time this afternoon catching up on the rainbow star project and the lemonade stand, and felt fulfilled by the progress. Benjamin presented me with a gift bag full of handmade Mother’s Day gifts after school that made me cry, right there in the car line. And Banyan could not have been any sweeter as he helped me get Benji to baseball and pick up our dog from the groomer. Everything felt so easy.  Then everything felt so confusing.

A little girl whose mother is in my online moms’ group passed away this morning. Unfortunately this is not a rare occurrence in my peripheral world anymore, but this was different. Lily and Benjamin share the same diagnosis. This was not a relapse. She was just diagnosed in July, on her third birthday. High Risk Acute Lymphoblastic Leukemia. Her Day 29 bone marrow aspirate didn’t even show Minimal Residual Disease. Treatment was progressing as expected–until it wasn’t. Saturday night she started getting fevers. Then Tuesday extreme leg pain. Then Wednesday pneumonia. Yesterday elevated heart rate and a ventilator. Today, she’s gone.

The shock reverberated throughout the moms’ group. It summoned fears back up to the surface. It made those of us in maintenance feel as though we’ve been too lax, and others early in diagnosis ask unfair questions. I just felt so sad, and so guilty. Which doesn’t even make sense.

This mother and I had never personally spoken, and I know better than to try and reach out to her right now. I found her daughter’s story and scrolled through everything I could to try to differentiate her circumstance from ours. How horrible is that? The only major difference I found was that they had found leukemia blasts in her daughter’s central nervous system during an early lumbar puncture. Then, I found a photograph this mother had posted on Monday. It knocked me over. I knew that image. It was strikingly similar to a photograph I took when Benjamin was in the hospital for Methotrexate toxicity. I found my picture and, against my better judgment, put the two images together on my computer screen. Our positions, our eyes, our expressions, our fears–the same. The reality I have never articulated was impossible to avoid.

When Michael came home, I couldn’t explain what I was feeling. I couldn’t even properly convey the facts of the situation. The words weren’t coming out right. We had talked about going to see our favorite local band play out in the park; many of our friends would be there, and it’s something I normally would push for. But tonight, I just couldn’t do it. I wanted–needed–to cocoon up with my people. To take comfort in their nuances. In the simplicity of their presence.

This is all part of the package, I understand. I just wasn’t expecting it. It hit me in a place I thought I had fiercely protected, as ridiculous as that sounds. I feel so heartbroken for this mother, and I feel the proximity of our October to her May. I look at Benjamin tonight–at both of my children–with renewed awe. I try to separate the gratitude from the guilt, and remember that love is always stronger than fear.

I didn’t save the composite photo. I couldn’t bring myself to post it here. I choose instead a moment of cool Friday breezes, a fresh Cuban sandwich, and a feeling I can’t quite put into words–for all the right reasons.

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