I remember the phone call with sickening detail – where I was standing when our pediatrician called and needed both parents on the line. I felt I was instantly living a nightmare. I listened to the doctor utter words about cancer, an indefinite hospital stay, and an oncologist expecting us immediately. Simultaneously I watched my son play with the car set we had gotten him after his 5th blood draw that month… he looked so small.
I climbed the stairs of our little house and stood in the middle of my son’s room, not knowing what to pack or how to prepare for the events that would follow. I stared at his bed and wondered if and when he would ever sleep in it again. It was all so surreal… a blow like I’d never experienced. And it was the beginning of a journey that would shape my life forever.
In the weeks and months to follow, during his most intensive chemotherapy, I racked my brain wondering how this could have happened. I fed him organic veggies. I snuck spinach into his food. I said no to most sweets and monitored his sugar intake. We went to the park. Played with friends. I had my thumb on every move and constantly thought about his wellbeing and safety. How, in God’s name, could he have gotten cancer? I felt robbed. I felt as if cancer had snuck in, in the night, and invaded my child while I slept peacefully in the room next door. It definitely brought a fire of anger into my belly that made me fantasize about having an all-out brawl with this beast. Me and cancer. I would win.
As the months and years went by, these feelings mellowed into a more reflective state. I became more rational. I saw the light at the end of the tunnel, and I could finally pick out the good we had seen and the lessons learned. Don’t get me wrong, I still had my days… the days I felt a knot in my chest until the kids were asleep, and then sank into my bed to cry. But it did trend up. The sobbing sessions spread out. I was able to see through the haze, at least until the next big change or transition. Slowly things took shape. The lessons that emerged, however, didn’t feel like little ah-ha moments – they felt earned. The kind of lessons that strip you down until you are raw and nakedly vulnerable, and then slowly cloth you with something unexpected and new. They had a significance that I will not easily shake, and one that is universal in application. And although I could list dozens of ways this life-event changed me, I decided to list my top five as follows.
1) Be grateful. My son had countless chemo visits over the course of his three and a half years of treatment, and was sedated 20 times for toxins to be injected into his spinal fluid. He received blood and Immunoglobulin transfusions, not to mention the ER visits for fevers, relapse scares, immuno-suppression, daily vomiting – you get the idea. But honestly, to walk into clinic for his chemotherapy and see the faces of the children recovering from Bone Marrow Transplants… bloated to three times their natural size after spending months in the hospital struggling for their lives… one feels nothing but fortunate. It could always be worse, and there are always things to be grateful for. This is not to belittle the struggle or avoid the grieving that must be done, but in our case the chances of my son relapsing were only 12%, while many kids were pinning their hopes of survival to a similar number. We were blessed.
2) Don’t fear what hasn’t happened. Sounds too simple, right? We moms always worry – it’s our job. We are constantly thinking about prevention and wellbeing. We obsess about things like screen time and the best kind of sunscreen… or if sunscreen is bad after all and we should resort to buying sun hats. Some of this is just life as a mom – because we care. Of course we have concern for our kids, and of course we see a potential tragedy five steps before it happens. It’s how we survive, and keep our kids alive too. There is a line, however, that we often cross. We play on the other side of the line – the “what ifs”, and it is an ugly and dangerous place.
When my son was in the midst of his battle, I feared a phase of treatment a few months down the line called “delayed intensification”. Just the name was enough to make me shudder. There were toxins he would receive that would undoubtedly make him terribly sick. One medicine was so hard on the heart that he would need an echocardiogram before and after, and then every five years for the rest of his life. He would lose his hair during this time, and there were a series of shots we would have to give him at home. The list goes on, and I was terrified. I cried and fretted for months before we hit delayed intensification, and at times felt absolutely paralyzed by my obsession with it.
My husband, however, dealt with things differently. He took it as it came. He listened to the facts, what could happen, and then decided not to live as if it already had. If the worst happened, we would deal with it, and if it didn’t, we would be grateful. His method fascinated me, and I started realizing how much energy I put into worry and grief over something that may not play out exactly how I feared. I am not one to run from mourning – it is essential – but I was literally doing it dozens of times more than what was needed.
After delayed intensification came and went, this lesson resonated with me and I still think of it often. My son did get sick. He did lose his hair. He did look weak and we did give him the injections. But, it wasn’t the overcast gloom that I had anticipated and spent countless hours worrying about. Overall, my son, in his 5-year-old glory, handled it like a champ. He still laughed and played. He loved seeing the image of his heart and learning how it worked. We brought crafts to his longer chemo sessions, and he suggested we administer the shots while he slept – which actually proved successful. We had his bed set up in our room so I could listen for his signals – if he had to throw up or had insomnia. We coped. We cried. We were supported. My hours of fearful worry over a phase we hadn’t encountered had been a waste. We had endured the dreaded delayed intensification, and much to my surprise, working through it together turned out to be nothing short of beautiful.
3) Mourning is good. I’ve learned a lot, in the last few years, about how I grieve. I’ve even changed it a little and grown to embrace it. But one of the most powerful things I’ve learned about grief, obvious as it may be, is that it is healing and necessary. The fear of the hurt is much, much worse than just walking through it. Putting off the mourning just prolongs the process, wastes valuable energy, and keeps you miserable.
I kept a CaringBridge site through my son’s treatment, which was one of the ways I grieved. I felt the pain and sadness well up inside me, and I knew it was time to write. Time to cry. Time to vent. As a mom of three, I had to literally reserve time on my calendar to feel sad and swim in the grief for as long as I needed. And afterwards, I felt surprisingly refreshed to pick up my bootstraps and carry on. In fact, I came to know and appreciate the healing power of grief so much that, when I felt it was time to mourn, I could not wait to have the opportunity to do it, feel better, and have the ability to be present again. The temptation to waste time running from sadness thereby vanished. Mourning was a service, and it was an avenue to freedom.
4) Make your own path. There are many things and circumstances that will force us to be different or stray from societal norms. My son’s cancer was the first thing that really pushed us to become our own advocates, and be advocates for our kids. The first few times I brought him to the doctor, they told me he was fine, and that “four-year-olds make stuff up”. Now, I respect every doctor we have had, but I know my son, and I knew he was sick. He knew he was sick. We just hadn’t found the right person to help us yet. Those mama instincts are strong, and should always be listened to. They may exaggerate at times, but they are usually based in some sort of legitimacy. We are the absolute experts when it comes to our kids… the way they breathe, what they stare at, what and how much they eat, and exactly what expression they make at each emotion felt. It is an art, and it takes thousands of hours of study. So when we encounter something in this world that is not right for our child, may it be a school, a certain caretaker, or some sort of media, there is no need to get defensive or angry. We simply stand confident in our expertise. And although we may gather information from others who are experts in their areas, when it’s all broken down, we are the only ones equipped to make the best decision for our child – with our heads up and shoulders back. It doesn’t matter if it strays from the norm. Who cares if Aunt Margaret and your respectable neighbor thinks it’s weird – make your own path.
5) Take good care. Now, I know as moms we are doing this every day, caring for the people around us, but it’s nothing new that we generally invest too much care into things that will never give us a return. What people think, if we are too old for a career change, or if our car and appearance portrays we are keeping up with the rest of the world, for instance. I fall victim, definitely. But there is nothing that erases the superficial faster than tragedy. On the one-year anniversary of my son’s diagnosis, a best friend of ours suddenly died of a brain aneurysm. She was 33 and had a 6-month-old baby. I was absolutely devastated along with our close-knit group that we called family. Her parents had lost their little girl. Her husband had lost his wife and best friend. Her little baby had unknowingly lost his mother and would never grow to remember her voice or the sound of her amazing laugh.
My son’s illness with all its baggage and life-long concerns, followed by the paralyzing loss of a cherished friend… it was enough. Enough to say, god-damn-it, life is too precious. It’s too precious not to feed our bodies well, sleep well, and respect ourselves. It’s too precious not to build on our dreams and take a risk. It’s too precious not to cherish our friends and nurture our inner circle like the treasures we’ve spent years to earn. We listed our very top priorities and vowed to spend the vast majority of our money, time, and thoughts on just those things. We vowed to take good care.
I wish I could say I live by these lessons every moment of every day, but I don’t. I stray. Thankfully, when I do, it doesn’t take much more than a nostalgic look at my big 9-year-old boy, a year and a half out of his chemotherapy, to remember. Life is a beautiful gift, even in the hard times, so treat it well.
Would I go back and save my son from cancer if I could? Of course. But I cannot, and as it turned out, the awful storm cloud did bring a silver lining. We are forever changed, and for the better. Despite the endured pain, struggle can emerge in such beauty after we drag our way through. It is this journey – the crawling, crying, agonizing journey – that breaks us down enough to mold and etch us into an irreversible and beautiful new design. That is, of course, if we aren’t afraid to let it.