My son was almost 3 1/2 when I was diagnosed, and his little sister was just 5 months old. We were still adjusting to the busy life of a family of 4 and getting everyone’s schedules straight. The day I found out I had cancer was a blur. I specifically remember thinking I would let myself have a pity party for a few hours, but when it was time to get the kids from school- I had to suck it up and act normally. There was still so much to process and so much we didn’t know about my prognosis. I did ok that first night- dinner, baths, and story time as usual. Harrison and I sang his special goodnight song and I rocked Evelyn in her chair. I went to bed early and surprisingly slept like a rock, I’m sure from pure mental exhaustion. But the next morning… the next morning was hard. I woke up to realize the nightmare was actually real- and when I walked into my son’s room to wake him up for school, I lost it. Seeing his worry-free, peaceful, sleeping face and knowing that his innocent world was about to be turned upside down just tore me apart. Especially since it had just gotten rocked by adding a baby sister in the mix.
Enter: mom guilt. Bad.
The days that followed were busy with diagnostic biopsies and scopes. Cancer likes to keep you busy and take over your life right away. Soon, close family and friends began offering to babysit so we could get some rest or sort things out. I know they meant well, but after so many repeated offers, I finally broke down again and cried to my husband- “If one more person tries to take my kids away from me, I’m going to lose my mind!”. I guess I just needed them around to feel normal, to keep distracted amidst all the awful waiting for results. We already had tickets to a baseball game for that first weekend after I found out- and we decided to still go. It was my first lesson in life with cancer- keep up your normal plans as much as you can. It turned out to be a great day full of distraction and smiles. I told myself from that day on, I would do everything in my power to not let cancer take away from any of their fun childhood memories.
“Hey buddy, Mommy and Daddy have something they need to tell you…”
That was the beginning of the hardest sentence I ever uttered to my son. I had known about my cancer for a few weeks and, after the tornado of events that take place during diagnosis, the plan of action was finally coming together. I was scheduled to have surgery the next day to move my ovaries up out of the field of pelvic radiation so I could start treatment. Now it was becoming real. This was the first physical step towards fighting this cancer, my first scar of many. I could tell Harrison was already sensing something was going on, so I knew it was time to talk with him about it. But how? How do I prepare my sweet little boy for what was ahead, when I didn’t even know the answer myself? How do you assure them everything will be ok, when it very well might not be?
I’ve always encouraged my patients to be honest with their children when talking about cancer and illness, but facing that conversation myself made me question everything. Do we use the “C” word and lay it all out there? Do we just say Mommy’s sick? Do we attempt to hide it from him altogether to protect his innocence? Knowing my inquisitive little boy, we decided to keep it honest and got straight to the facts. We explained that I have a very different kind of owie in my tummy that’s called cancer. I told him the doctors will have to take it out with surgery and I’ll have to take a strong special medicine called chemo that will make me feel pretty yucky. He took the information well, asking appropriate questions for his age. Can I see a cancer owie… does it hurt… is it dark in a surgery… do I have to have a surgery or take medicine too? I answered his questions the best I could, told him I loved him very much, and we switched back to our normal PJ Masks or matchbox car conversations. He didn’t bring it up again until that night as I tucked him into bed- he told me that once I was finished with all my special medicine, I could have a sleep over with him in his boys-only fort, just me and him. And there it was. The moment I knew I had no choice but to beat this. There was no other option, I had to be here for these kids now and for many years to come. I didn’t want to miss one moment. The thought of leaving my kids without a mother hurts too much to even linger on for very long. Even now, a year and a half later, I have yet to fully process this possibility. I’m not sure I ever will. The first step was to figure out how all four of us can get through radiation, surgery, and chemo while still living our lives.
My goal was to keep things as “normal” as possible for my kids. I nearly immediately called Annie, the child life specialist from my cancer center. We spent a long time talking about Harrison and how he’d coped with everything so far. She explained that “normalizing the abnormal” and maintaining routines/ expectations brings children comfort and a feeling of safety in the midst of illness. Harrison really adjusted well. There was a revolving door of visitors at our home and no normal schedule, there were last minute changes of plans that led to disappointment, he learned when mommy needed to rest and have alone time, he didn’t get to sleep in his own bed for extended periods of time after my surgery, he had to be woken up in the middle of the night more than once to be tossed in a car to bring mommy to the Emergency Department, he had to learn to keep his hands washed and that mommy couldn’t get kisses on the mouth or pick him up, he heard “I can’t do that with you right now” way more than any kid deserves, he witnessed his mom pulling over on the side of the road to throw up on the way home from school, he saw the line up of pill bottles on the bathroom sink; the abnormal became normal- and he was so brave through it all. He proudly brought his stuffed monkey named “Chemo” to school for nap time, he learned about my ostomy and called it a “button”, he would quietly sneak in to check on me as I slept and whispered “sorry you don’t feel good mommy” (once even bringing me some chloraseptic spray he found just in case it would help). He loved to be a helper and feel included, giving me checkups and feeling my chest port through my skin. He loved to visit when I was in the hospital and even got to help me ring the bell at the end of treatment. He went on this roller coaster right alongside us, and I couldn’t be more proud of him.
I am no expert, and every kid is different, but I have learned a lot as a cancer patient and mom of small kids. I know that kids are so resilient, want to feel needed, and love fiercely. I’ve learned that they might not always know how to talk about their fears or what questions to ask, but if you listen closely- you can pick up on what they really need in the middle of all the chaos that being the kid of someone who is ill brings. Another mom who has cancer once told me that this is their story too, and to let them process it in their own way. For us, using play therapy with a specialist was so important for Harrison. He really thrived in that environment and was able to express his fears and learn to cope. It helped me, too- knowing that he had this resource and getting feedback that he was managing his stress well.
I really hesitated to add this next part because I’m not sure how it will come across. It’s a complex thought for me and I’m not quite sure how to explain it properly. I love both of my children deeply- but you probably notice I didn’t mention my sweet daughter very much above. Mostly because she was so little when I was diagnosed that I didn’t have to agonize over what to tell her or the questions and fears she might have. I just had to make sure all her needs were met and she felt safe. She didn’t know any different. Having a mommy that couldn’t carry her car seat up the stairs, or that wasn’t home sometimes, or that laid down on the floor as she played with her blocks was simply normal. I’m not sure if the thought of this being standard for her is reassuring because she didn’t have to adjust or depressing because of all she missed out on. Here’s the part I’m afraid to admit- I pushed her away. I was so crippled with the fear of dying that I think I unconsciously held her at a distance… just in case. It already hurt too much worrying about leaving my husband and son, the three of us had been going strong for a while. I just didn’t know what would happen- and I think I was just trying to protect my heart as much as I could. I was mad at cancer, mad that it showed up right after I realized my dream of completing my family, mad that it made me stop breastfeeding my baby and left me too exhausted to have those sweet late night bonding moments, mad that everyone else around me had to suffer because of my diagnosis. Don’t get me wrong, I love her deeply and she was a light for me in so much darkness- but I feel like it just took us a little longer. I guess I was protecting both of us- maybe that in itself was a selfless act of love. I don’t have a “favorite” kid, but I do have one that I worry about more. Harrison’s older and will remember more, and he’s just more sensitive overall… Evelyn has been independent and laid back from the start. But- they both need their mom.
Right now, I’m cancer free and we’re back to life as usual- for the most part. There are still moments that take my breath away and they still happen often. “Momma, can we go to Disney World when I’m 10” (I hope I’ll get to go, too). “Momma, when I have kids, I’m going to have a beard” (I so badly want to see the people they become and the families they make). “Momma, do you promise you’ll be my mommy forever” (sigh. I sure hope so, buddy). Even tonight, on Mother’s Day eve- Harrison had a bad dream and needed extra back rubs. And this morning, Evelyn woke up in one of those “I only want my mommy” moods. These moments are just little reminders that nothing is promised. As harsh as that reality is, I truly appreciate this perspective I’ve been given- it makes me realize how special those every day moments really are.
No matter what the future holds, I know my kids will be just fine. They have an amazing father and family support system. They both have huge hearts and bring joy to everyone they meet. They are kind and funny and love to learn new things. I’m certain they will both grow up to make their own beautiful mark on the world… and every day I pray like crazy I’ll be here to see it.
P.S. The fort sleep over was even cooler than I imagined.