September. Summer’s heat meets Fall’s crisp air and school is back in full swing as if it never stopped. I sit out on my deck this chilly Sunday morning with my coffee and my headphones listening to the same old worship song on repeat over and over again. Just this week I received some photos Izzy and I had taken at the hospital through an amazing program called Flashes of Hope and I am waiting for them to download. I scroll through them with different eyes this morning because it is September and it is Pediatric Cancer Awareness Month. Though I have had a child which brings an awareness to this injustice for almost four years now, I still look at each photo in disbelief.
Four years ago something like Pediatric Cancer Awareness Month would have certainly meant most nothing to me. Because I could not understand. Because I was not aware. All month long I have wondered what to say to my small world to help bring more awareness. But the truth is, if you have followed our story, if you know Izzy exists, then you are aware. I could take you down the dreary journey of a day in my mind or a day caring for her. But I will not. For that is a hopeless path that gives glory to the enemy and what he has stolen and I simply will not go there.
For some reason greater than I could ever understand this is the journey the Lord has allowed for my family. I will not choose to invite you on a journey of awareness with us today. What I will do instead is invite you on a journey of unawareness. An unawareness that is Izzy’s. What I will do, in this month of Pediatric Cancer Awareness, is choose to focus on all that Izzy is unaware of. And I will ask you to celebrate and give thanks for that with me.
Just this week we were at a hospital and the registration clerk was being silly as she checked Izzy in, “Are you married, Miss?”
“No, but I want to be,” Izzy smiled and looked at me in the chair next at her. Her eyes went back to the woman across the desk, “And I want to have babies too.”
Izzy is unaware that the medical community has placed an expiration date on her forever. It has never occurred to her that she might not grow up and get married or have children. She still dreams of being a bride, of wearing a beautiful wedding dress on her wedding day and of having babies. She still dreams without hesitation and walks forward everyday with hope for her future. She is unaware of any reason not to and I am so very thankful for that.
Not long ago we were at a playground and a little boy asked why she didn’t have any hair. The truth is, Izzy is unaware that one can slide back and forth on the spectrum from ‘survivor’ to ‘fighter’. She was given the title ‘survivor’ once and still she claims it. Her response to his innocent question had nothing to do with the chemotherapy that she knows she takes. The chemotherapy that she knows has taken her hair. Her response to the little boy? “I don’t have any hair because I am a cancer SURVIVOR.” Perhaps she is unaware that she ‘should’ say she is fighting now or perhaps she is declaring her own destiny. Either way I am so very thankful for that.
Izzy is unaware of life before cancer. That is a one of the hardest things for me to be thankful for but I have no choice because, diagnosed at three, it is simply all she knows. Izzy is unaware of what it was like before she received the bulk of her caloric intake through a tube in her belly overnight. Unaware of what it was like before ulcers lined her esophagus and as they healed it narrowed. She cannot remember the months of vomiting blood and not being able to swallow that has given her an aversion to food. She is simply unaware life was ever any different. As hard as it is, I am so thankful for this unawareness for then she would mourn as I do.
Izzy is unaware that she used to be able to hear perfectly. That she could hear me whisper, “Goodnight love,” in her ear at bedtime. While she recognizes the difference in her hearing with and without her hearing aids, she doesn’t remember a time that she could hear perfectly without them. Her feeding pump often goes off at night, beeping for some unknown reason – kink in the cord, air in the line – but she can’t hear the high pitched noise. A noise we can hear on other levels of the house. She is unaware the pump is beeping and unaware the damage chemotherapy has done. I am so thankful for that.
Izzy loves to look back at her baby books. She loves babies so she loves to see herself as one. I on the other hand can hardly sit through the entire book. She is unaware the cancer cells where already there, in those photos. She looks back at pictures of the first birthday party, laughing, the cake all smeared upon her face. It was there, no body knew. Second birthday party. Third birthday party. Pictures of the first pony ride. It was there, growing the whole time and while I am now very much now aware, she is not. I am so very thankful for that.
This week we have scans. Tuesday and Wednesday. Thursday we will go back for our appointment to talk about our plan going forward based on the results from those scans. Izzy is unaware of what all this is about. She loves Cincinnati. She loves getting sleep medicine and seeing all her friends at the hospital. I am so very thankful for that.
The truth is as adults we need to be aware of a few things when it comes to Pediatric Cancer. Not enough money goes to fund Pediatric Cancer Research. And until more does, finding cures will be slow going. Until more does, kids will keep dying. We also need to be aware that feeling sorry for sick kids isn’t enough. It does nothing. When you see a bald kid out and about or, God forbid, on a billboard don’t feel sorry for the kid. If you feel pity, just stop. Because that child is stronger than you and I combined. But if you feel compassion, let it motivate you to do something. If you can’t think of anything to do, don’t know where to donate, just stop and pray. Pray for a miracle for that child you just saw.
I walk around with an awareness that my daughter has cancer. An awareness that haunts me. That drains me. Izzy does not. She walks through each day with joy and hope. She has dreams of growing old and has approximately five careers lined up. She doesn’t know or care what the medical community says about her future. She lives each day to the fullest always expecting more from the next. That is how I want to live too. I want to stop being so aware of disease and statistics and just be consumed by hope. I want to be consumed by God’s promises and believe they can be possible for her once again too.
In this month of awareness let us not become consumed by the dreariness of this disease. Let us not become so overwhelmed by how horribly sad it is that we lose hope, that we stop asking for healing. If anything, let the dreariness motivate us to an intolerance. An intolerance to accept such an injustice. May we continue to move forward believing that God can heal and that these kids are not defined by the diseases trying to take over their bodies.
Blessings on you today and LIFE for Izzy!