Day 373

day 373

The day after making final our decision to end our childbearing years, I have been surrounded by creative, loving, healthful energy. I am so grateful for it.

I went to the market this morning to buy a chicken from my friend’s farm for an extra healthy batch of broth this week. It was a busy day at the market and they were completely sold out of chickens, but I was inspired by the love and productivity of their sweet family. Afterward I stopped by another friend’s house to receive the gift of a high quality batch of sourdough starter. I am so excited to begin a new Sunday ritual by baking bread tomorrow, and to infuse the benefits of fermentation into my people. Later, I went to the grocery store to stock up for the week. I saw the most gorgeous pregnant woman there. I felt genuinely happy for her without a single pang of remorse. And tonight, I found myself in one of my favorite circumstances: seated in a circle of women, in a room painted with inspiration, honoring a mother about to give birth.

My blessing for the new mother was inspired by my wise friend, who is leading me on a daily meditation journey that focuses on a single word each day. Today’s word was unboundedness. As the word unfolded for me throughout the day, I realized that so much of what we need is available to us in limitless abundance: love, power, grace. I wished for my friend these things without bounds as she welcomes her new baby.

Social media reminded me that it was a year ago today that we came home from All Children’s for the first time after Benjamin’s diagnosis. We have viewed the world through so many lenses since then. I remember how surreal it was to drive south over the Skyway, to pull into our driveway, to see the neighbors and the sky and the roof and our bed. I was so grateful for these things, yet afraid of their familiarity. Afraid of what it would feel like to be with things that comforted me.

I still live with fear, of course, though it has changed shape. Today, as the boys prepared to go to a movie with their friends, fear took hold of my voice and made it bark orders. Pay attention to people around you. If someone is coughing or sneezing, get up and move. Wash your hands before you eat anything. A small treat is okay, but candy AND soda is too much glucose for your body. Don’t touch anything you don’t have to. I can’t help it. The fear is enough to make me appreciate that it has been almost three months since Benjamin’s last hospitalization. In many ways, he is a normal, healthy kid who deserves to go see a movie without being barked at. But he’s also still a kid with leukemia and a compromised immune system. One unfortunate encounter with the wrong bacteria and it’s back to the seventh floor.

And of course, there’s the biggest fear. Relapse. I truly, deeply, in my core believe that relapse is not part of Benjamin’s story. But it happens to enough people in my online group that I can’t ignore the possibility. This mom’s post had me in tears in the checkout line:

“Unfortunately I have bad news.” Wait. What? Bad news? About Luca? Not possible. He’s awesome. His scan was over in record time. They take longer when something is wrong right? He’s laughing and making jokes and perfect. He’s the absolute perfect picture of health and happiness and joy and all that is right with the world. Nope, bad news is not acceptable. “To see this, after 6 years. It’s not what we expect. But, it’s real. About 1/2 an inch lesion. It’s real. I’ll get the team together. It needs to come out. I’m getting in touch with Neuro-surgery…” Bits and pieces, words and nonsense, and why am I sitting down on the asphalt of my driveway sobbing and angry and how is this possibly happening? Not my best moment, and still not sure exactly how that all unfolded – but I finished the call with a Monday, 12:00 appointment for clinic with neuro-onc and neuro-surg, and a completely terrified contractor on my lawn shuffling his feet and looking at me with a mixture of fear, sadness and sympathy. 

Somehow I called Tony – who came home after hearing my complete nonsensical sobbing on the phone. I have a vague recollection of calling my parents – who were on the road I think – until we realized we don’t know what we need yet. Then my sweet sweet, perfect, healthy, amazing and completely miraculous son comes in and hugs me. Silently. Just hugs me. Then goes back to his very important business involving Skylanders. Moments later I calmed myself and went in to tell him. It is, after all, his body. He deserves to be among the first to know. He should have been THE first to know. As I tell Luca the news, that the cancer has returned, explained the possibility of surgery and medicine and hospitals and that I really don’t know what is coming other than that he’ll need to fight once again – this perfect, sweet, unimaginably intuitive 8 year old, held my hand and patted me on the arm, looked me in the eye and said “They’ll take it out. It’s ok mom. They’ll just take it out. I can do it.”

Our children are incredible human beings. And through all of it–the diagnosis, the shock, the paralysis, the research, the fear, the gratitude, the big decisions, the triumph, the moments of clarity and the moments of despair–we are supported without limit. Unboundedness. There are always unseen hands to catch us when we fall. Call it the universe, call it God, call it love, it’s all the same thing. But it’s here, and it’s without limit, without end.

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