I want to tell you a story. The story of how I learned to breathe life. Not just live it, but feel it. Taste it.
Breathe it. You won't find funny here. Not today.
I'm a mother to three beautiful little boys who are all so charismatic and unique you wouldn't believe it. I'm married to my high school sweet heart. We've lived in small town USA all our lives. There is only one high school, we all know the sheriff, and we sit on huge front porches and drink sweet tea in the summer. We cruised the local Dairy Mart for fun in our teens, we've watched each other grow up and our friends' parents grow old. We gossip at the local corner store, we still pull over for funeral processions, and we go to church on Sundays.
My husband and I are raising our family on a small farm where we have cows and dogs and cats. We grow corn and cut hay. The kids jump in mud puddles and climb fences. They kick rocks and throw walnuts. We're living the quintessential American dream. As American as apple pie. Authors write novels about people like us. You know, the kind of books that give you hope and a sense of simplicity.
I thought I knew all about life and how to live it. I'm in my early 30's, I have two college degrees and three kids. I know what it means to love my kids, be a good mom, wife, daughter, sister, and friend. I can drop them off, pick them up, and get them to practice. I can pay the bills, clean the house, cook their dinner, and do their laundry. All with a smile on my face. It's obvious I've got it all figured out. My priorities are in line. I have a purpose and know my place. And I love it. I'm satisfied and thankful. I'm so foolish...
Last summer my rose-colored glasses were ripped from my face. There was no warning. No caution flag. My middle son, at the fragile age of four, was diagnosed with cancer. Leukemia. My blond-haired, blue-eyed little cowboy. I had no idea he was sick. Not a clue. There were no signs. No symptoms. I took him to his pediatrician because I thought he had bronchitis.
Bronchitis. There was no bronchitis. There was
cancer. Cancer?
Cancer.
There are no words to tell what that feels like. To tell you what it was like to pick up the phone and call his daddy to tell him his baby - our baby - has
cancer. It's serious. Progressed. Deadly if untreated. The next thing I know we're in the children's hospital. There are doctors and nurses and interns and residents. Asking questions and starting IV's. Giving us mounds of paperwork that I didn't understand (and still don't) and demanding that we "Sign here and here. Initial here." I felt like they were trying to sell me a used car. I was angry and confused. I still am.
The next day proved to be something straight from the guts of hell.... my sweet baby underwent two surgeries. The first to place a port in his chest wall, during which his airway collapsed and was placed on a ventilator to breath for him. To breathe
life into him. That same evening, the right ventricle in his four-year-old heart collapsed. They took him to emergency surgery to remove malignant fluid from his pericardial sac. The surgeon literally picked me up and placed me on the stretcher with my baby. The staff dressed me in surgical scrubs as they were running down the hall with him lying on the bed and me laying right beside him. Doors were swinging wide open and crashing against walls. Machines were screaming. I went straight into the operating room with him. Laying beside my baby who looked like he was sleeping so soundly. My left hand over his heart and my right hand on his head. They let me stay until the entire medical team arrived to drain cancerous fluid from around his heart.
Cancer. I was later told that they "never" allow that, but they didn't think I was going to see him alive again. That night his cardiac surgeon sat on his bed in the ICU holding my son's hand... "I don't know why your son is still here. He shouldn't be here, medically speaking, but he is."
After that the days started to run together. I was lost. I thought
he was lost.
Cancer. There was chemo and dressing changes. There was vomiting. Uncontrollable vomiting. There were pills and fluids and cocktails that bared names I couldn't pronounce. His tears, sweat and urine turned pink from the medicines. There were tests. And then there were more tests. There was uncontrollable feelings of neglect for my other young sons at home that had been left with strangers to care for them. There were visitors, tons and tons of them. I started to feel like I was drowning. Suffocating. I couldn't breathe. I couldn't stand to look at anyone, or explain our situation anymore. I was nauseated by the sterile smells and the sounds of machines and pumps. I couldn't talk. I couldn't eat. I couldn't sleep.
Two weeks later, I was sent home to care for my baby. But he was different now. He was sick. He was fragile. He was scary. He has
cancer. The unknown and the what-if's literally ate at my soul. I felt out of control. I couldn't fix it. I couldn't take it away. No band aid could patch it up. A million hugs and kisses couldn't make it better. I would literally lay in his bed with him at night and breathe his breath in through my nose as he slept. That sweet baby breath that now smelled of chemicals and salves to protect the bleeding sores in his mouth. I believed in my heart of hearts that I could breath the cancer out of him. I dreamt that I could breath it out of him and give it to me. I prayed for this. And sometimes still do.
The days turned in to weeks and the weeks into months. We made trips to the Children's Hospital Oncology Clinic on a weekly basis. Sometimes daily. Because? My son has
cancer. More chemo. Sedations and bone marrow biopsies. Chemo injections into his spine.
Cancer. Countless cocktails of rocket fuel being pumped into his little body. More hospital admissions than I can recall. Whole brain radiation. Blood transfusions, platelet transfusions, and plasma infusions.
Cancer. Vomiting and dehydration. Steroid rages. Narcotic pain medications. Massive weight loss followed by unimaginable swelling and weight gain. He was unrecognizable. Where there was once a shock of white-blond hair was now only a layer of thin, veiny, pale skin. He was shocking and frightening to look at. Where did he go? Where was my little cowboy? No matter where I looked or how hard I searched I couldn't find him. I could only find
cancer.
The funny thing?
He never saw cancer. He only saw
life. He didn't change.
I did. He wasn't scary or frightening or unrecognizable.
I was. In the time between chemo and vomiting, between clinic visits and spinal taps, he was still living. He was playing and laughing and running and wrestling with his brothers. When he could, he was outside jumping in mud puddles and climbing fences. He is resilient. He is unbreakable. And he always will be.
Our life will never be the way it was before last summer. But we're adjusting to our "new normal". His cancer has one of the longest treatment regimens of any cancer. He'll be in treatment until October 26, 2015. Three years and three months. There are no guarantees. There is a high risk of relapse and complications and secondary cancers. There will always be the what-if's and the whys. I'll always be searching for something. But never for my child. I know exactly where he is and what he's doing. He's busy
living, NOT busy having cancer.
He's busy being a little boy, playing Spider Man and tractors. Building forts and kicking soccer balls.
He's still bald and he still vomits. There are still countless trips to clinic and countless pills to swallow. There is still chemo and sedations. There are still tests, and transfusions. There is still cancer. But there is also
life. I still lay next to him and night and try to breathe his breath in to me. But now, I'm not trying to breathe away a disease, I'm trying to
breathe in life. Not into him, but into
me.
"You can either go sit and cry in the truck, or you can COWBOY UP!"
