It is early morning, not even the sun is up yet. Izzy slides her body slowly down the side of the bed on her stomach, waiting for her toes to hit the floor. She drags the backpack which holds her IV nutrition behind her across the floor, trying not to step on the tubing. She has hours left until she will be free from this ball and chain that nourishes her. Her steps are stiff and small and her body is hunched over like a frail old woman. Ever since chemo really started taking hits it has taken more and more time each morning for her body to move without pain.
Standing at the hotel window now, only half awake, she looks out at the darkness before her, the tail lights of cars glowing as they pull out of the parking lot. I give her her morning meds through her G-tube as she stands there, with little disruption to her daydreaming. It is time to go now and I begin to bundle her up in her winter coat and help her with her shoes. I wear her IV backpack and she leads me like a leashed dog. I don’t make her wear her green mask, there will be few people in the lobby, but throw it in the bag for when we get to the hospital.
In the car she asks for the music up louder and louder, so loud that I can hardly think. Her tiny, pink hearings aids should arrive soon. I am anxious to see just how much they help her, convinced things are probably worse than I notice. To me her wearing them will be a visual reminder of her loss. But to her wearing them will restore something that has been taken. I am sure she will be happier being able to decipher what is being said around her all the time. Perhaps she will be less nervous around doctors if she knows what they are saying.
Our drive to the cancer center is short but she’s nearly back asleep by the time we arrive. This is not our usual hospital which is strictly for children. In fact, in the few times we’ve been there I have never seen a child. I am now quite used to people from the outside world staring at her. With no hair, a little green mask, and connected to the backpack I’m carrying, everyone knows she is, dare I say, ‘sick’. But the eyes I feel looking us up and down in this facility are different than eyes I’ve ever seen before. These are some of the most compassionate eyes I have ever seen because they are the eyes of grown, mostly elderly, men and women who also have cancer. They have what none of the rest of us have access to, an inside glimpse of what she actually ‘feels’. I have spent nearly every second of everyday with her along this journey. I have watched it all, but I cannot ever say I know what it feels like. Often times I catch myself when trying to comfort her, “I know, baby. I know.” Then I remind myself that I do not.
A few months back, following a very traumatic procedure that occurred while she was awake, she began roll playing medical procedures on her baby doll. She told me that the doll, Miss Judy, had cancer. She said it would take a long, long time for it to go away. During these procedures on Miss Judy that were hurting her she would comfort her and tell her the doctors were nice people who only meant to help her. She began to tell me all the things ‘Miss Judy’ felt. ‘Miss Judy’ was afraid of sleep medicine but she liked to be asleep for certain things, like whenever they had to fix the tube in her belly. ‘Miss Judy’ did not like it when nurses held her down because it hurt sometimes. One night we couldn’t find something that Miss Judy needed to calm down and I told her it was okay. “It’s fine, baby. Miss Judy is okay.” She looked me straight in the eye with the candor of someone far beyond her years, shook her finger at me and said, “She is not okay! No one knows what Miss Judy feels but me!” How right she was. She had found the only way she could to tell me that no one knew what she felt. Since then I have been careful to let her be the one who communicates on behalf of Miss Judy.
Even though Miss Judy had walked through every day with Izzy, she could not fully know every detail of her heart, like any good doll should, until she shared her diagnosis. Until she had gone through the same procedures, taken the same medications, even had a central line placed. Then and only then could Miss Judy truly understand the things Izzy whispered to her at night. If only Miss Judy could talk I’m sure they would be up for hours.
Miss Judy can see Izzy through the eyes of someone who knows, firsthand, each detail that comes along with this disease. And so can the men and women we see at the cancer center. They look at Izzy with eyes of compassion like I have never seen. They are not eyes of pity or eyes fixated on our life like a car accident you just can’t turn away from. No, they stare at her with tears of grief at the realization that such a small, delicate child should go through the same horror they are living in. The first words out of their mouth are mere words of comfort, ‘Bless you,’ by a man I later learned has had brain cancer for five years. ‘Poor, thing,’ by a random man walking back to his treatment. I was completely unprepared to find some of the most compassionate faces on the bodies of grown individuals in the midst of their own suffering. It has been both humbling and deeply moving.
Over the past week God has given me the grace to stay in the present moment, never looking too far down the road, or at least not staying there for very long. I am working to make conscience choices focusing on what ‘IS’ instead of what ‘IF’. Choices to trust Him, if only for the day. To be thankful, if only for a moment.
“Trust is the channel through which My peace flows into you. Thankfulness lifts you above your circumstance….practice trusting and thanking Me continually. This is a paradigm shift that will revolutionize your life.” Jesus Calling
I need a revolution in my life, don’t you? The patterns and habits we use to give us illusions of control provide mere crumbs of peace compared to what He can provide. They satisfy us for a while until we need control more than we’ve ever needed it before, perhaps when we wake up in the midst of tragedy, and then they fail miserably. We would have more luck finding comfort in our childhood baby dolls than finding lasting peace in our own self-contrived strategies. We need the kind of peace that is sustainable and life giving. The kind of peace that only Jesus can give. He gives it freely, but it is up to us to accept. That acceptance cannot be found in a church, it cannot be found in religion. It is a daily act of surrendering what isn’t working and in it’s place allowing Him to wholly fill us with Himself.