My daughter was diagnosed with high-risk leukemia, 4 months shy of her second birthday. It was difficult to wrap my brain around the fact that this happy, pink-toenail-polish wearing toddler, could possibly have cancer.
Carpools and T-Ball practice, which once ruled my schedule had now been replaced by something called a roadmap. A roadmap, that if closely followed, would come close to guaranteeing a 70% cure rate. In the blink of an eye I had become a mom with a 30% chance of having their youngest child die before she reached her 7th birthday.
Seemingly endless 80 mile round trips were made to Seattle Children’s Hospital. Trips punctuated by watching chemotherapy roll out of a bag into a catheter protruding from her chest. The catheter, buried just under her skin, snaked stealthily up her neck with a quick turn, the destination, her beautiful two-year old heart. Like a baton being passed in a relay, the heart would pump poison to the sinister cells that lie waiting in her mutating bone marrow.
Additional chemotherapy was given via a “poke” into her spinal canal, where spinal fluid was extracted, tested and replaced by yet more lethal chemotherapy. Our physician let me watch these lumbar punctures. She let me watch because she knew keeping me on the other side of the wall was a merciless endeavor, my anxiety quelled by watching. If Lexi could go through it, even in an unconscious state, I could at the very least endure watching it.
People asked then, as people ask now. How did you do that? I am as dumfounded by the question now as I was then. Even after knowing hundreds of parents like me, understanding the “how” is a bit of a mystery. Without a doubt, there were times when I lived in fear, the shower my only refuge for wracking sobs and rehearsing her funeral in my head. It was there I gave into the “what if” thoughts. I could see us sitting in front of her little casket, our heads bowed in prayer. Cursing the will that I had begged God to bend. Her brothers would have to comb their hair and I would have to buy them suits. They would sit next to me. Yes, I would need to feel their bodies near me, a tactile reminder that I had not gone with her.
It’s a secret among parents whose children have cancer, this rehearsing your child’s funeral. We all do it, we cant help it, if only briefly like one would take a photo and delete it. Quickly comes the focus onto something else. Intellectually we know we did not bring this upon our children but emotionally we wonder if the law of attraction really does exist and our souls have somehow called this grenade into our lives. Thinking so, only serves to fuel the feelings of hard-wired guilt we have that somehow and in some way we could have thrown ourselves in front of this train called cancer. This seemingly morbid coping mechanism is not to be confused with loss of hope but rather my attempt to try death on, in bits. It’s complicated, this seeing yourself alive on the other side of grief.
I confess to being a poor waiter. I would scrutinize the faces of the CAT scan techs upon tucking her into the CT scanner for the monthly check of her lungs. Had the dreaded fungal lung infection proliferated? Nothing…I got nothing. While the machine scanned her lungs I scanned their faces. Looking for signs of what they were seeing on their monitors. I questioned, was that a raised eyebrow or perhaps an attempt to avert my gaze? My fight or flight response would kick in and along with it the urgent need to expel my bowels. I would wait the requisite 30 minutes for the results that would determine both the short and long term plan for my daughter’s life. I endured this dance close to 50 times.
Propped up in a polka dot booster seat, IV bag sprawled out on the floor of the car, the then 4 year old Lexi asked innocently, “ Mom, where do you think Heaven is?” Driving, I involuntarily placed my hand over my mouth, pausing so she could not hear the painful silent scream that was being emitted between breaths. For as many times as I had pondered the answer to this question, the reality was, explaining a leap of faith to a four year old was paralyzing. The question posed innocently as she watched the evergreen trees pass by on the side of the freeway.
I had to answer. I had to answer because this was information she needed to have and perhaps imminently. Agonizingly I said, “ Lexi Heaven is here. Heaven is like the pages in a book. You know how there are words on both sides of a page when I read you a story?” “Yes,” she answered skeptically. Well, Heaven is like the words on one side of the page and we are here on the other side of the page. Heaven is NOT far away. It’s a beautiful peaceful place and it’s right here. Thinking, how in God’s name can I tell her Heaven is someplace far away? I won’t allow this child to go the restroom in a public place by herself, or cross the street alone, how could I send her to Heaven alone? In her perfect Lexi way she answered, “yeah, right.” She was not buying it. I realized I was answering my own yearning.