I was diag­nosed with smol­der­ing myeloma in 2010 when my chil­dren were 7 and 10 years old. Three years prior, their Dad drowned after being ejected from his surf ski, a spe­cial­ized lightweight kayak.

I’ll never forget sharing the news of his accident with my chil­dren. Their Dad was in a coma in the intensive care unit. They were so young, it was such a shock, and they came up with what I thought were very sophisticated ques­tions. “Is he going to die?” my eldest asked. “Most likely,” I replied. “No, what are his chances, Mom?” he insisted. I had to be honest. “He is going to die,” I said. “He got too cold and his brain stopped work­ing.”

My son got busy making a hat for his dad out of some golden fleece we had lying around. As our kid, he knew the importance of keeping your head warm to retain your body heat. As a Waldorf student, he had some basic sewing skills.

Fast for­ward three years. I didn’t have the heart to break more bad and terrifying news to my chil­dren at the time of my diag­nosis. I felt like we had just come out of the shock and the initial grief of their Dad’s death, and were becoming accustomed to our ‘new’ nor­mal.

I had just pur­chased a house with enough of a yard for shooting soccer goals, trampolining, chasing chickens, and planting vegetables. We were getting used to just the three of us around the dinner table and navigating holidays and Father’s Day. I had devel­oped a whole new level of parenting stamina: volunteering on a weekly and some­times daily basis, chaperoning field trips, traipsing around the state for soccer games on the weekends, taking care of the var­i­ous needs of my kids, learning how to deal with my own on­go­ing grief, and theirs.

I felt fortunate to have the time and freedom to parent on this level; it was a gift. I didn’t have the time or the bandwidth for my own diag­nosis.

I told my closest friends and solicited their advice. Do I tell, or not? Some were sup­port­ive of my de­ci­sion to hold off, others were not, citing that my kids would hate me in the future if they knew I was withholding in­for­ma­tion. They thought I’d create trust issues for my kids. This was a chance I was willing to take.

Although I was handed a “Preparing for Transplant” binder at my initial cancer center visit, no one could tell me just when that might hap­pen. Statistically, it was likely to be within two years. I felt like there was too much un­cer­tainty around my rate of pro­gres­sion to warrant disrupting the status quo in my kids’ lives. As the last parent standing, I knew that my kids’ biggest fear was that some­thing would hap­pen to me. It was some­thing that caused a lot of anxiety, necessitated tearful late-night con­ver­sa­tions, lots of reassurance (“I take good care of myself”), trips to the therapist, and dis­cus­sion of ‘the plan.’

I wasn’t having it. So I waited and waited, trusting that when it was time to tell, I would know.

Keeping my med­i­cal issues private took some intention. Although I told my siblings my diag­nosis (with explicit instructions not to share the news with their kids), I kept my diag­nosis from most friends. I had to de­vel­op language for my kids around why it was nec­es­sary to avoid germs, like when we flew and disinfected our seats, tray tables, and armrests. Why I carried hand sanitizer hanging from my purse, and used it a lot. Why I didn’t eat at buffets. Why I didn’t allow their friends over if they were sick. “I have a wonky im­mune sys­tem,” I said. They never once asked why.

I scheduled my doctor’s appoint­ments and tests at the cancer center to oc­cur during the school day, racing back and forth to be home when they came home from school. I got a post office box so that no correspondence with the word ‘cancer’ ever came into the house. I wanted their childhoods to be as carefree as they could, despite their earlier trauma, and I didn’t ap­pre­ci­ate ran­dom reminders of my situation showing up in my mailbox.

The time to tell came when my bone mar­row biopsy in March of this year, my sec­ond in 10 years, revealed 60 per­cent plasma cells and I was told I needed to begin treat­ment. At the same time, the first COVID-19 wave was cresting, and my son had to leave his college campus and return home. There was no way I could keep this private anymore; every cell in my body was telling me it was time to tell. And so I did.

Over my life time, I’ve learned the value of safety nets, or scaffolding, as is the trendy term. I first consulted with my kid’s counselors about how to go about breaking bad news to teens. They advised finding a neutral location, using language they could under­stand, not giving too much in­for­ma­tion at once, and letting them guide the con­ver­sa­tion.

I followed their advice. My chil­dren and I along with my part­ner met on a Saturday in late April, in a conference room in my part­ner’s closed office build­ing. We each sat in a corner of the room, so we were physically distanced. My college student had been home from campus for barely a week and was quarantining at my part­ner’s home. My younger son thought we were just getting to­geth­er for a family chat. I brought along some Kleenex and a whole lot of brave. Telling my kids was what I had been dreading for 10 years. I knew it would be heartbreaking for them. I felt queasy and lightheaded, but it had to be done.

I started by saying it was good to all be to­geth­er. Then I started choking up. After taking a few deep breaths to steady myself, I con­tinued. I could see alarm dawning on their faces. I referenced my wonky im­mune sys­tem, and ex­plained that I had tests done recently to try to get a better picture of what was going on. Then I named it – mul­ti­ple myeloma – and said it was a blood cancer.

My kids were shocked and stunned. They had no idea. I answered their ques­tions, I followed their leads. This time, it was my younger one who wanted to know the prog­nosis. My older one did not. But I gently pre­sented it anyway, because I didn’t want them to leave the con­ver­sa­tion thinking that I might only have a few months to live, as was the case with a family friend a few years earlier. I tried to focus on the pos­i­tive, using words like ‘treatable,’ ‘chronic,’ ‘drug de­vel­op­ments,’ ‘stage 1,’ but also in­clud­ing the word ‘incurable.’ I wanted them to know the full story. I prom­ised them transparency from here on out.

Over the ensuing weeks and months, I have had the chance to double back, to talk some more, to clarify, to process, and to be transparent. This processing is familiar territory for us. When a parent dies when chil­dren are young, kids deal with their grief to the ability of their de­vel­op­mental level. These levels change every few years, and new feelings come up. I’ve always en­cour­aged ‘feelings’ con­ver­sa­tions, and I’m grateful we have that type of com­mu­ni­ca­tion down pat. I flat out asked my chil­dren if they were angry at me for keeping my smol­der­ing myeloma diag­nosis from them, and they emphatically said they were not. They under­stood my rationale, but said they were grateful I was telling them now. I really needed to hear that.

And although COVID-19 has robbed me of the ability to hug my part­ner and kid – and has made life more complicated, and frankly, a bit more terrifying – the in­ter­sec­tion of the pan­dem­ic and the pro­gres­sion of my myeloma has forced me to come to terms with one of my biggest fears: telling my kids about my diag­nosis. I can cross that one off the list now, exhale, and move on, feeling a little more free. That, for me, is the silver lining.

May we all go from strength to strength!