Parenting to pomp and circumstance

It’s a Friday night in early June and I’m watching the live stream of high school graduation from the comfort of my couch with a heating pad on my shoulder. Grace, one of my twin daughters, is somewhere in the orchestra playing timpani for “Pomp and Circumstance” while her twin sister Rose is babysitting across town. It’s hard to believe they are growing up so fast. They will be sophomores next year.

Grace asked me to join her at graduation. She wanted me to hear her play in the band for the last time (she’s not doing band next year) but I didn’t feel up to it. Not only did I spend the entire day in Chapel Hill freezing in a conference room at the MRS/Metavivor Metastatic Cancer Stakeholder Engagement Conference, I wasn’t sure I had enough self-control to watch graduation without sobbing. I know that my girls will be there in three more years.

Spending the day engaging with other patient advocates and listening to researchers tout the latest in scientific advancements and potential clinical trials on the way … it was a grim and chilling reminder that I’ve already been fighting metastatic breast cancer for three years, and that my chances of celebrating their graduation are dicey. I didn’t have the emotional capacity to stifle tears through this graduation worrying that I may not make that milestone with them.

It’s a constant balance of being a strong advocate for this disease and reserving energy to be a well-balanced mother to two typical teenagers. On this rainy Friday night, my body screamed for time on the couch under a quilt so my muscles might relax, and my head could stop spinning.

Over the last 9 months, I’ve had the opportunity to review materials from a well-regarded university hospital. They are designed to help parents navigate conversations with their children about a terminal diagnosis. Nearly 1 in 5 patients in active cancer treatment has a minor living in their home. While the majority of parents with advanced cancer identify their child, or children’s, future wellbeing as a priority, we often lack the knowledge, skills, self-efficacy, or resources to adequately address their concerns. This program helps equip parents to emotionally cope. Once launched, it will include one-on-one time spent with a counselor, and handouts designed to help patients and their partners. The narrative is thoughtful and authentic; designed to open the door to discussions that every parent-patient likely thinks about but doesn’t always have the courage to voice (myself included). It helps parents think through what to say and how much detail to share while providing ideas of other things we can do proactively to help prepare our children.

Nearly any parent diagnosed will tell you that their No. 1 concern is for their children—at any age—but especially those with school-age children. It’s certainly my biggest concern and working alongside these researchers to develop these materials has given me insight into how I can prepare my family for the final stages. Personally, I’m preparing my daughters to drive a car, cook a healthy dinner, handle finances on their own, and get accepted to college, but it’s damn near impossible to prepare them for the final stages of life with cancer and potentially death. But these are just a few of the things that we are doing.

Since my diagnosis, we have gone full throttle into making memories with the girls. We haven’t ever been accused of wasting a vacation day, and we all love to travel. We joke that our bags are always half-packed. We make considerable effort to make sure that we create memories on vacations at National Parks across the country, and we have quirky traditions like pumpkin ice cream for dinner on Halloween and spending Memorial Day glamping on an island at the beach. The girls roll their eyes at our tradition of kissing every time we cross a state line and singing “(Back Home Again in) Indiana” when we cross the bridge into Indiana. They may be cheesy ways to express our love, but it’s something they will remember.When I can, I grab a postcard from the places that we’ve visited. I have a stash of them for the girls to discover one day with a little note about each trip we’ve taken. It’s just a few words about a special meal or funny story that won’t mean much to anyone who wasn’t there, but it’s my way of creating a unique snapshot of that experience.

We’ve also been very intentional to surround them with other strong women they can lean on when I’m not around. We make sure to keep family friends and youth leaders from church involved and engaged in their lives. Coaches and special teachers also play a role in watching out for the girls. Investing in those relationships helps me feel more comfortable that they have a connection to a nurturing female who is already involved in their lives. And, it’s a good flag for us—if the girls start showing signs of emotional struggles, these are the women we know will lean in and help them and/or bring it to our attention. If I can’t have eyes in the back of my head, at least I have girlfriends to help watch out for the girls.

This summer will be the fourth year the girls attend Camp Kesem, a free summer camp for children of parents with cancer. It was one of the first websites I hit when I was diagnosed metastatic, and I was fortunate to get them into the North Carolina Sate University program in its first year. They’ve attended ever since. For weeks following camp, they are busy texting new friends with funny names like Peanut Butter, Ichabod and Dancing Whale (all kids go by self-selected nicknames the entire time they are at camp). At the dinner table, they share snippets about someone named Flounder and the results from his dad’s scans, or we follow the evolution of Violet’s mom’s treatment options. Occasionally, they will send a card or a meal to a fellow camper who lost a parent. Their Kesem friends are all impacted by cancer and it’s a huge support system for the girls because even though they have each other, it’s reassuring to know they are not the only kids living in a house stained by cancer. I’m always curious how much they share with the other campers.

In the university materials, they encourage parents to consider their vocabulary and that’s something that is important to me as well. Our girls are teenagers and have a grasp of the finality of death. I don’t plan to tiptoe around the difficult conversations when the treatment stops working. I won’t use words like “when I go to sleep for the last time” or “everyone dies sometime.” I am laying a foundation to be honest with them about what they can expect and potential impacts it may have on our family. I don’t want to worry them frivolously, but I believe that it’d be more stressful for me and hurtful for them if I’m not honest about treatments. How can I trust them to be honest with us, if we aren’t straightforward with them?

I often feel that the cancer controls me. Being intentional with the girls and helping prepare them for the inevitable feels good to me. It brings me a sense of comfort. The skills that we are modeling demonstrate that love and respect go hand-in-hand with communication and adventure. It’s not perfect, but I am fortunate to have the time to prepare them as best that I can.

Lately, I’ve been considering pre-purchasing graduation gifts – something timeless and thoughtful to tuck away for the evening in June when they wear their cap and gown. If I’m lucky, I’ll be there to hand it across the breakfast table on the morning of their big day. Attending graduation is my current goal … but if I’m not there, this small token will be a tangible reminder of how much I loved them. When they march down the aisle to “Pomp and Circumstance”, they will know that no matter what the circumstances, I am filled with pride for their accomplishments and hope for their futures.