This past week Izzy has carried a nervousness that has been both heartbreaking and expected. She has cried about things that I cannot fix and asked questions I cannot answer. I have tried my best to circle around her inquiries drawing attention away from that which I do not know to that which I do know. “Your eyes are the most beautiful thing about you baby, you don’t need hair,” and “I don’t know how long we’ll get chemo for but I will be right by you through it every single day.” Sometimes my efforts have been successful and sometimes they have not.
Monday night we were coming in from playing and she was being extra delicate about something. I picked her up and carried her into the house, asking what was really wrong. “I just can’t get my mind out of the idea that I have cancer,” and she buried her face in my shoulder and began to cry. “It’s all I think about,” she muttered. And so I realized that I had to find a way for it not to be the only thing I think about. I had to find a way to not walk around in sadness all the time. For her.
That night she slept with me and I prayed the Lord would consume her with a supernatural peace as she slept. I prayed He would take her every thought about cancer captive, freeing her mind to be a child.
Yesterday she had a port placed in her chest. It will provide direct access to her heart for this poison we call chemotherapy. There were problems placing it, the first location they tried had too much scar tissue built from the last tine she had a line place so they had to go in through her neck instead. Is that too graphic? Imagine how I felt when I walked into the recovery room to find her beautiful hair saturated in dried blood. Saturated. Her eyes opened and as soon as they met mine she tried to speak. She was in pain. Her mouth was dry from the breathing tube and words weren’t coming out but the tears falling down her cheeks told me what she was trying to say.
The nurse began to scroll down what she had been given in the OR and I kindly acknowledged the list. She then asked if I wanted her to be given a dose of Fentanyl or IV Tylenol. Hmmm, they just cut into three different places of blood vessel and proceeded to stitch a piece of plastic to a muscle underneath her skin – let’s go ahead and assume we’re past the IV Tylenol. But a simple, “Fentanyl,” was all I said.
Her vitals were off for a while. I chatted with old nurses we used to know. But through it all I managed to keep it together on the outside, in spite of what I was feeling on the inside. Until we were wrapping up and the nurse handed me this:
If you don’t know what it is I’m happy for you. It is a CVC (Central Venous Catheter) Emergency Kit. Anyone with some type of line that goes to their heart must have one with them at all times. I carried one in my purse for a year and a half. We had one in each of our cars. Anyone who took Izzy anywhere had one. On the oncology floor they are everywhere. They hang on every IV pole as a precaution. A child can’t even walk down the hall without one.
So when the nurse handed me one yesterday and said, “I’m assuming you know what to do with this,” it just hit me in one culminating wave of trauma from the past and fear of the future. You see, I do know how to stop my daughter from bleeding out, should the line be ripped from her chest. I do know how to replace her g-tube should the one in her stomach now be pulled out like it was once before when it got caught on a blanket. I am not a nurse but soon I will be giving her shots at home and taking her blood pressure regularly. They have taught me more than I ever wanted to have to know.
But you know what no one has taught me? How to walk on this path now. How in the hell I walk forward every single day full of hope and fully present with Izzy, never missing a moment, when in my heart I am consumed by grief and despair. No one shows you how to walk forward authentically, not pushing down the hard stuff, but still clinging to hope, still clinging desperately to the possibility that this may not be the beginning of the end.
When Izzy finally woke up and began looking around her pain was much more controlled. I was trying to carefully clean the blood out of her hair without disturbing the wound on her neck. Together we looked down at the port that is hidden closely under skin right above her heart and she started to cry.
“What’s wrong, baby? Does it hurt?,” I asked stroking the strands of precious hair away from her face. She shook her head.
“I don’t like it. I want it out of me,” she wept. I tried talking to her but she just cried. “When can it come out?” My heart broke then and there because according to the doctors it never will. I am trying so hard to hope for more, to believe that God has more for her and that He will deliver her once again. But I just stood there, silent, stroking her hair.
As I put the CVC kit in my purse it felt like an acknowledgement of where we are now. I remember how freeing it was a year and a half ago to throw them all away. I hid it in the very bottom so I couldn’t see it, still not wanting to believe chemo would be starting in a little over a week, her hair would fall out and her suffering would begin. Yesterday I read the first chapter of a book that is all too familiar and I hated it.
I want more than anything to embody a grace, a peace and most importantly a hope that overflows to Izzy through this hell. I have to figure out a way to keep going, to keep fighting, to keep believing she can be healed because she needs me to.
Blessings on you today and LIFE for Izzy.