Over the course of the years since my son, Ty, was diagnosed with cancer, I reluctantly became a cancer mom. AKA: Momcologist. It is not a group that I wanted anything to do with. In the beginning, I denied myself from developing a relationship with another cancer mom because I simply couldn’t take on her fears in addition to mine. And I didn’t want to believe that her child’s potentially poor prognosis might be the same as mine. I didn’t want to know.
My first day in clinic on the 9th floor at Memorial Sloan Kettering was spent people watching. It was October 2010 and I stared at all the babies in strollers with puke buckets underneath. Kids walking on crutches because they had a limb amputated, dragging with them IV poles that filled their bodies with poison. And moms, dads and grandparents that wore supportive tee-shirts like “Team Cory,” “Prayers for Ashley” “Warrior Jake” and “Super Nate.” I will never do that, I thought. I will never embrace this. I will fight this kicking and screaming every second of the way.
By December I was wearing a “SuperTy” tee-shirt and have worn them almost daily ever since. Even after Ty died in October 2012. I had no choice but to accept the truth. That I will forever be a cancer mom. It doesn’t matter that I didn’t want it… none of us did.
We are all different. Some of us shout from the rooftops about the unfairness of it all. Some are angry. Some are religious. Others want nothing but privacy. Regardless, we walk the same dark and painful path and share most of these things in common.
· We are smarter than our doctors when it comes to our own child. Our instincts tell us if it’s neurological nausea or if it’s from the chemo. If it’s a belly ache or c-diff. If it’s an infection or a false positive (or a false negative for that matter). We analyze ever sniffle and consider the nuances of every blink. “Do his eyes seem shifty to you? Was that a slight limp?”
· We look at the daily and weekly bloodwork results and immediately scan down to see the ANC first, then the platelets, the red and white blood cells, then the electrolytes and so on.
· Lysol and Purell are our best friends. Our hands are dry and chapped because of it, but we don’t care because we can’t afford to get sick, and more importantly we can’t let our child get sick.
· We have all slept on a pull out hospital chair that is as comfortable as a concrete slab. We have all turned our backs to our sleeping child while in this “bed” so we can cry silent tears as we listen to the beep of the monitors telling us that oxygen saturation is low or there is “air in line.”
· At the hospital we climb into bed with our children only to stay awake all night in fear of pulling on one of the various wires or tubes attached to him or her.
· We have donned rubber gloves and flushed a mediport. We have administered meals through an NG or G-tube. We have gotten excited to write down “1/2 of a potato chip” or “one bite of cheese” on the growing list of calories for the day.
· We have seen our child suffer in a way no parent should ever have to witness.
· We have seen our child suffer in a way no parent should ever have to witness.
· We kiss the scars. We have an intimate knowledge of each and every one. The shape, color, size and texture. The exact location. I call them my “magic kisses” and sometimes even I believe that they can make the boo-boos go away.
· We own bags with several different compartments that are filled with medication of all kinds. It never leaves our sides. We carry spare parts to g-tubes and needles for mediports in the same pocket as the baby wipes.
· We have buckets and tissues everywhere, and we have mastered the “reach behind” to help our child throw up while driving the car.
· We have all been given a treatment “roadmap” only to discover that there are countless twists, turns and bumps in this road that they didn’t warn us about.
· We don’t sleep well. We are night owls, not because we want to be, but because we are haunted by our helplessness. We go online and we research for hours on end, which is why…
o We know the names of children all across the country, what type of cancer they are fighting and how they are doing.
o Like a doctor reading a patient file, when we see something posted about a child with cancer, we know how to scan the story to find the age, symptoms, diagnosis, treatment, and we skip to the end to see if the child died. Not because we are morbid but because we are hopeful. Because we are looking for another child like ours, and praying that his or her story ends in a happy life without any complications. When that isn’t the case, we shake it off and remind ourselves that our child will still be the one. That miracles happen every day.
· We suffer from scanxiety. The weeks and days leading up to an MRI result in more anxiety than the most stressful life moments imaginable(i.e. your wedding day, your biggest final exam, your most exciting job interview – these don’t even hold a candle to such pressure).
· Because of this, we carry a multitude of good luck charms, we become victim to superstition or practice rituals like eating the same thing for breakfast on an MRI day.
· We are guilty. It was our job, as a mother, to prevent this. To protect our children. We look at pictures and wonder, “did he or she have cancer yet?” We recall things that may have been indicative of cancer but we didn’t alert our doctor, like the time we thought the baby was just car sick. Maybe if we caught it sooner it wouldn’t have gotten this bad. Maybe we ate some soft cheeses while we were pregnant, or fed the baby non-organic fruit. We constantly point the finger at ourselves with a wealth of reasons why we are responsible for this.
· We have blind, undying hope. No matter what we read, no matter what our mind knows to be true, our hearts never give up on our children.
· We negotiate with God. We debate when enough is enough. Before cancer, tubes in the ears or a tonsillectomy would make us gasp. After the cancer diagnosis, we are forced to consider far, far worse outcomes like the loss of a limb, hearing, eyesight, the ability to speak or eat. Severe brain damage. Death.
· We are humbled by how good and kind others can be. We have made friends with complete strangers who fall in love with our children and just want to help.
· For those of us who have other children, we dread and avoid the pediatrician like you can’t imagine. On one hand, they have to break an arm before we reluctantly take them, and on the other hand every time they lose an eyelash we assume they have cancer.
· Our other children do not get the attention from us that they so deserve, and that we SO WANT to give them. It is inevitable that they will spend the rest of their lives, their new lives post-diagnosis, sitting on “the back burner.” They don’t have cancer. They are going to live. Our other child might die. It becomes that simple. Homework doesn’t matter anymore, blood counts do. We want to be there to help you ride a bike, but we might not be.
· We have a beautiful perspective on parenting because we have been forced to appreciate every single day with our children – even the worst days. Banal conversations are insulting when you are scheduling your child’s radiation therapy or waiting for him to recover from surgery in the PICU. We want to shout at parents with healthy children who complain about the stresses of pee-wee league or laundry, “Just enjoy your children. There’s no such thing as too many hugs!”
For those, like me, who lost their child:
· We will never heal. We will never “get over it”. Even when we are smiling, know that we carry this pain every second of every minute of every day. You may not see it, but we cry every day.
· We are failures. We didn’t save our child despite all of the prayers, the advocacy and the infinite hope. Now we will do everything we can to continue fighting childhood cancer to try and make up for our failure by honoring our children.
· We have a love/hate relationship with music, poetry, nature and all things beautiful because they remind us so much of what we lost.
· We look for signs everywhere. We worry about our child being alone and we yearn for confirmation from them. We hope the warm breeze was her hug telling us “I’m here” or that the light flickering was his silly way of saying “I love you.”
· We beg and plead for them to come to us in our dreams. Every night as I go to sleep I whisper “Forgive me. Come to me in my dreams because that is where we can still live together.” I have yet to dream about my Ty.
Yesterday Gavin saw a ladybug crawling on the floor in his toy room. Now we were both visited by Ty this week! I always leave the ladybugs alone and they seem to disappear just as fast as they appeared. Like magic. This has been a good week for all of us. A very busy week, but a good week. Thank you, everyone, for loving Ty and sharing his story. So many exciting events planned for the Foundation in upcoming weeks/months. Please make sure you check his Facebook. I will be posting a monthly and weekly calendar of activities to keep everyone informed!
I love you all so much, thank you for your support. As Ty would say, I love you Big Much!