Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.
As a parent facing cancer, we just want to know that our children will emerge on the other side of our diagnosis and be alright.
I cross paths with many parents newly diagnosed with colorectal cancer. In the midst of trying to wrap their heads around a cancer diagnosis, they are also trying to integrate this most unwelcome guest into their homes.
It is completely unfair and not right that you find yourself facing a cancer diagnosis when you have nothing but hopes and dreams for the way parenting and childhood is supposed to be. You have done everything you can to protect them from the pretend monsters under the bed and the real monsters lurking in the world. Yet, here at your doorstep is the most real and feared monster of them all, and you have no choice but to let it in.
How is cancer supposed to fit into this Instagram-perfect life you've created for your family? Too many times I've looked down at my kids coloring on the floor of my infusion room and wanted to scream, "IT'S NOT SUPPOSED TO BE THIS WAY!" It's not supposed to be this way for my friend who was diagnosed while still pregnant, or my friend who lost her husband while their baby was still in diapers, or my friend who has a special needs son who will depend on her for the rest of his life. Despite the way it supposed to be, but we have no choice but to parent through cancer.
For parents facing a cancer diagnosis, I offer three bits of advice:
Grieve the loss of parenting as you expected it would be. Grieve the loss of moments, time, milestones and innocence.
While sitting in a hospital bed recovering from my initial cancer surgery, I had to watch cellphone video of my baby taking his first steps. I'd left that nursing baby at home, not realizing that he would start to walk, and the stress of surgery, drugs and additional weight loss from a liquid diet would dry up my milk and force me to wean him.
In its first week, cancer had stolen significant parenting milestones from me. Little did I know it was foreshadowing of the years to come, when school performances, field trips and holidays would be trumped by infusion appointments and side effects that left me unable to parent like I wanted.
Let go of control. Let go of the hard-and-fast rules with which you parent. Let go of the state of your house, that pile of laundry or even making your bed. You can try to hang on, or you can save your energy for fighting this disease.
I laughed as I piled the groceries on the belt in the checkout line. There were enough pre-packaged ready-to-eat meals to last a week. I would have silently shamed this version of precancerous me had I seen her a few years before, when I was busy making homemade organic baby food and nursing my babies on demand.
Precancerous me had the energy to passionately care about what my kids ate, what they wore and the amount of time they spent in front of the television. Cancerous me just wanted to crawl in bed and make the next few days as effortless as possible, and spare what little energy I had for making sure my kids were fed, happy and had their mom.
Giving your kids control in and out-of-control situation will empower them and make them feel like they are part of the solution.
My 4-year-old couldn't drive me to appointments, or take notes while my oncologist rattled off the names of drugs I still don't know how to spell. But he knew where I stashed all my nausea meds, and which puke bowl to grab me when I needed it. He has always had an age-appropriate role in my care and has done his part to make me feel as well as he could.
By making your kids feel like they are part of the process, you are making them feel like they are part of the solution. My preschooler wasn't able to fix my disease, but he was able to support my fight against it.
As instinctive as it may be for parents to want to help their kids before they help themselves, we have to listen to the flight attendant and put the oxygen mask on us before we put it on them. We have to make sure we're breathing through this, so we can show them that they can keep breathing through this, too.
Regardless of the outcome of the diagnosis, we must remember that children are resilient. They won't remember what we missed, but they will always remember when we were there.