The Spring before Holden was diagnosed I attended the first Sweethearts Ball. For those of you who don’t know what that is it’s a fundraiser in Coeur d’Alene for a camp for Children with cancer, now called Camp Journey. I ate dinner and shed a few tears as I watched the video about the camp. At the end of the night I wrote a check, walked to my car, let out a big sigh and prayed, “God thank you that my children are healthy. I COULD NOT do that!”. Now I used to imagine that at that point God said, “Wanna bet?!?” I promptly forgot all about that night. Life doesn’t stop and kids with cancer is not fun to think about. Four months and 27 days later I found myself in the ER at Sacred Heart staring at a doctor who had just said, “Well, it’s cancer.”, while picking her dinner out of her teeth.
An hour later when the the elevator opened on the 3rd floor the word Oncology hit me in the chest and took my breath away. As we entered the unit I was horrified as we passed room after room each with a little bald head in it. Before that moment I honestly thought Childhood cancer was so rare all kids were treated at St Judes. How could I not know places like this existed an hour from my house? I thought cancer doesn’t happen here. It happens on TV commercials and sad Facebook posts. I would soon realize how wrong I was.
The next day we learned that Holden had Rhabdomyosarcoma. In my mind I spelled it over and over afraid I would forget. This makes me laugh now because that’s not exactly something you forget. A few days in the hospital followed by a port placement surgery and a stay in the PICU and ready or not, we were shoved face first into treatment. 11 months of chemo and 6 weeks of radiation. I’ll spare you the details because I’ll cry my mascara off and frankly there are not words that big.
Now that Holden is off treatment I’m surprised that it’s not as easy as I thought. On one hand mundane ho hum every day life is AMAZING. And I get to sleep which is again, AMAZING. On the other I am in constant fear of the unknown. Google is not my friend. But the hardest thing by far is that I want to be in two places at once. I desperately want to go back to a world with out childhood cancer or at least where I could push it out of my mind. I wish it never happened. I wish I didn’t have to wonder about every bump and bruise that before cancer I would have shrugged and said, he’s a boy who plays hard. I wish I could cleanse my mind of the reel of horrifying images of my son in pain that will never leave me. I want to go back to a world where my child doesn’t scream in worry, “I don’t want to have cancer again” after he gets sick in the car.
Oh how I desperately wish I could go back. But If I was some how able too I would have missed out. I would have missed out on so much. I would have missed out on Sarah. I met Sarah our very first day in clinic. My husband and I were huddled in the corner of the playroom with that shocked, deer in the headlights, I can’t believe this is happening, first time in clinic look that all of us know well. We’ve all been that parent and we’ve all seen that parent. I was hoping no one would talk to me. Every one was smiling and it was so opposite of how I felt I wanted to stand up and scream “what is wrong with you people!” But Terry started playing the guitar and sweet Sarah started dancing. A bald head, in a pink dress, attached to an IV pole dancing with Joy unspeakeable. It flowed out of her infecting the entire room with it’s warmth. She danced when I wanted to run. She danced when other people would be feeling sorry for themselves. She danced and taught me that circumstances do not dictate happiness. That ho hum mundane life that I now think is amazing is because of Sarah. I sadly didn’t feel that way before cancer. There was always something else I needed before I would be truly happy.
I also would have missed out on really finding out where my true strength comes from. I watched Holden handle everything amazingly well. When we were in the hospital I would cry in the shower because he was being so strong and I felt like I had to match it. I didn’t want him to see me cry. Before cancer I muscled through everything on my own. I knew Jesus, I loved Him, I believed in Him, but I could and would do everything on my own. I was so mad at Him after diagnosis I had a hard time praying. But I could feel his presence everywhere. In the midst of the most trying time in Holden’s treatment I found this quote by Brennan Manning:
“When tragedy makes its unwelcome appearance and we are deaf to everything but the shriek of our own agony, when courage flies out the window and the world seems to be a hostile, menacing place, its the hour of our own Gethsemane…The night is bad. Our minds are numb, our hearts vacant, our nerves shattered. How will we make it through the night? The God of our lonely journey is silent. And yet it may happen in these most desperate trials of our human existence that beyond any rational explanation, we may feel a nail-scarred hand clutching ours…In our vulnerability and defenselessness we experience the power of Jesus in His present riseness.”
This became my battle cry. It doesn’t sound brave because in our most trying times sometimes all we can mange is a whimper. When everything is upside down and the heaviness of the pain you carry is unbearable what we need most is not to hear platitudes but for someone to grab our hand and walk with us. I orginally used to imagine that God said, “Wanna bet” In that parking garage almost 3 years ago. Now I know he said, “I will help you.” And He did. Even on the days we weren’t on speaking terms I could feel Him holding me. The fear hasn’t gotten any easier, the pain is still heavy, but I know I’m not doing it alone and that makes all the difference.
I had a hard time writing this speech. This is my third try. They all seemed lacking. Lacking because Childhood Cancer is no small thing. As much as I have tried to measure it with words over the last few years I haven’t been able to. I don’t have words that big. But I will keep trying, because for every child with cancer there are thousands of people who are just like I was before.