It’s Monday morning and I can’t even believe it but I’m packing for Izzy’s Make-A-Wish trip that we leave for tomorrow. Well, I’m supposed to be packing but I paused to piece together these three different blog posts I have never been able to finish into one. And that about sums up the state of my heart right now, or shell of a heart I’m trying to live with. I start to think I feel a certain way, not for the sake of communicating but simply for being it, and by the time I’m done with the thought in my mind I decide it isn’t fully true. I think to myself, “This is nice, I am at peace,” and then I realize that no, no I am terrified. Then I decide mostly I am afraid and then I think, “Are you crazy? This is wonderful!”
I guess the truth is that I am just not one thing right now, I am a lot of things and then I am nothing at the same time. Carter and I had fun together last night before bed and we laughed one of those laughs that you can’t make stop. Afterwards he told me it was the first time he had ever seen me laugh. That, of course, was not true but it broke my heart. We talked about it for a bit and he said that when I laugh I don’t really laugh. I guess he would be really right.
I have certainly recognized this deep disconnect between my heart and mind and have begun counseling, fully acknowleding that I have done what I have to make it through this horrid season. Last week the counselor said something similar to what Carter said. She told me that she hears me talking but I am completely removed from the story I am telling. And that’s just it. I talk about this experience like a story. Someone else’s story because I desperately don’t want to acknowledge that it is mine.
It’s great to celebrate that a little girl made it through this journey, but it’s easier when it’s someone else’s little girl. When she’s mine my heart cannot fully engage. It is torn to shreds from the pain it has felt over the past two years and the fear that the pain will return. It was really fun to see a little girl running around her party with cowboy boots on smiling about swimming with dolphins. Until I realized she was mine. The same one I used to hold a bucket for while she threw up ounces of blood. Then it became easier to forget. Sometimes I can forget, I can pretend that none of this happened, but there are times during the day when I can’t. When there are reminders. Those reminders start every morning first thing and linger through the day.
At 6:30am the pump for Izzy’s fluid goes off. We have transitioned her from IV fluids that ran through her central line to Pedialite that runs through her Gtube. Kendrick stays home a little longer in the morning now while we adjust to this new routine.
At 7am she is up and dressed and it is time for her first of three doses of meds. She gets five in the morning: something for nausea, an appetite stimulant, an acid blocker for her tummy, an antifungal and an antiviral. In the past month we have weaned her off two others. The meds need to be given an hour before her feeds so she doesn’t get sick.
At 8am it is time for a puree meal that goes into her Gtube 3times a day. It consists of a high-calorie formula that has been whipped together with peanut butter, greek yogurt, baby cereal and canola oil. A batch only lasts for forty eight hours so it must be made a few times a week.
The puree must be pushed into her Gtube slowly because her tummy is still so sensitive. We sit on the couch and read one of our favorite books or watch one of our favorite shows while I push 5ML at a time until the entire 8oz is in. Then I change the gauze dressing around the Gtube site applying a topical ointment twice a day.
As she and Carter put their shoes on for school Kendrick begins to wash all syrines and tear down the fluid bag from it’s pole. I strip down the protective pad that was on top of her sheet that is soaked from overnight and throw it in the laundry with her wet night gown. When a child is getting nearly all of their fluids overnight they can’t possibly contain them all.
It’s not that the amount of work or the weekly drive to Cincinnati are bothersome or even overwhelming compared to where we have been. What they are is constant reminders of the trauma from the past. They are constant reminders of the possibilities for the future. They feel like weights keeping us attached to the past, never allowing us to break free and fully embrace hope.
Sometimes Izzy asks what will happen if the cancer comes back, an answer I will not go into great depth with my 5 year old about. I only tell her we will continue to pray that it never happens. At night before bed I often ask her to pray with me. I ask God to keep her disease free and boldly declare LIFE over her. Her prayer, however, always goes something like this:
Thank you for everything you have done for us. We just love you so much and trust you and know that no matter what you will take care of us because you are God.
I smile gently completely unsatisfied with a prayer holding that much wisdom and maturity. I don’t want something from Oswald Chambers here, I want the innocence of a child asking her God to keep her from getting sick. I ask her to please ask Jesus for that and she very willingly agrees. But much to my surprise she opens her mouth only to release almost the exact prayer as before. And this happens every night. I say, ‘Izzy, can you pray, too, and ask God to keep your cancer away?’ She always does but she always prays the same way, ‘thank you…we love you…we trust you NO MATTER WHAT.’
The thing is, she always looks at me like we just prayed for the exact ask thing. Like me saying my exact same rigid prayer is the same thing as her saying that we trust Him because we know He will take care of us. And I find myself wrestling with God on that because I don’t want to say that prayer at all. But maybe, just maybe I should try. Because one of us is running around in cowboy boots laughing and the other one is living with the shell of a heart.
I’ve included a picture of Izzy pretending she was at the beach. She used to do it all the time when we were inpatient and I can’t wait for her to see the beach for the very first time in her entire life tomorrow. I praise God she gets to see the real one. You’ll be happy to know that Miss Judy’s bag is packed too and for the first time ever it isn’t filled with stuff for chemo or anesthesia but with a bathing suit and a towel.
Thanks so much for everyone who came out to celebrate with us this past weekend. Izzy had a wonderful time and it was such a blessing to be surrounded by family and friends who have cared for us throughout this long journey. Special thanks to everyone who volunteered – we couldn’t have done it without you. Pictures of our trip will be posted on FB throughout the week. Praying for a chance to relax and heal. Blessings on you today and LIFE for Izzy! (or let’s just trust God or whatever!) 😉