Sunday, November 22, 2009

I Can't Know...

I'm learning so much about what I don't know. And, I'm discovering that what I don't know could fill rooms and canyons and caverns and oceans. I'm a teacher. I'm also a perpetual student. So, I'm supposed to know stuff. My mother has always stressed the importance of education, striving for knowledge, and being well-read. I bought the whole idea that "Knowledge is Power". But, I'm discovering that what I don't know wields a mighty sword.

A couple of weeks ago, Dan and I made a trip to Birmingham for a follow-up visit in their CF Clinic. She had been hospitalized at UAB in an effort to improve her dwindling lung functions, and we were seeking a second opinion about the next step in courses of treatment. Unfortunately, UAB was unable to offer anything really different or innovative in the plan of care for Danielle. And, it wasn't because they didn't try. There isn't anything new medically to do.

Previously, the doctors said they didn't note any permanent damage on her chest x-rays. We all held onto that report like a life-preserver. In Cystic Fibrosis, scar tissue replaces healthy tissue in the lungs as the disease progresses. This scar tissue ultimately makes it more difficult to breathe and essentially suffocates the person from the inside out. Thus, it came as a sickening surprise when Dr. Hoover told us that based on her current lung function and predicted disease progression, Danielle only has 2 to 3 years left to live unless we do something radical, drastic, risky, scary and miraculous... A double lung transplant.

I have walked around in a fog for two weeks. For seventeen years, my sole mission in life has been to keep my girls healthy enough to live whatever life they have wanted to live. I would passionately write letters to be included in their school files about their care that always included the line: "We live with Cystic Fibrosis, not for it." We enrolled in drug trials, and walked a delicate balance between living life and doing the medical necessities to care for the girls' bodies. With CF, the statistics have always been in the back of my mind. The mean life expectancy is currently 37-years-old, but it was 17-years-old when Danielle was born. Lots of people with CF are living into their 30's and 40's. Then there are the "outliers"... One woman lived to be 79 years old... Several people with CF have survived into their 60's. My girls were/are going to be the outliers. But, this throws a wrench in my "outlier plan".

Dr. Hoover explained other statistics... (And, I couldn't help but think that math has always been my nemesis.) Currently, there is a 50% survival rate for 5 or more years of life post double lung transplant. And, there are outliers within lung transplant recipient statistics too. You can read about the courageous story of Susan Burroughs, one such "outlier" here:

So, I'm sitting and I feel the weight of the numbers bearing down on me... I believe that I have always relied upon God. I have always felt His/Her loving presence watching over my family, and I have developed a close, personal relationship with my God. You see, this God has come to me in the hospital bathrooms when I have locked myself in, sobbing silently into a towel after difficult medical procedures in which I held my girls down so the nurses could stick them one more time. I've never had a white light and George Burns didn't show up smoking a cigar, but I knew in my heart that God was healing me, healing them, healing us all because I felt the presence in moments of extreme vulnerability. But, I haven't had to be a crumbling mess to feel God. I have experienced that presence in prayer and meditation too. I have experienced that presence in class when I really want to pinch a student's head off. I have experienced that presence when I have walked out and looked up at the sky and noticed an incredible sunset. So, since I was about 14-years-old, I have walked with God... And, my concept of God is probably not the same as yours, but I have known an all-loving, all-forgiving presence in my life, and I have done my best to introduce that God to my children.

But, my error has always been in trying to figure out God. I have tried to mash together my knowledge about CF, treatments, therapies and the like with what God's will is supposed to be. And, I think I have always been aware that I do that. I have probably even written about my spiritual struggles here. It's like I was trying to create my own mathematical formula. If God is all-loving, then my girls will live long and healthy lives. And, that still may be true... But, it also may not, and it doesn't mean that God isn't all-loving if I can't have my way.

And, I think I have done an O.K. job with Dan because she has handled this news WAY better than I have. We both cried as Dr. Hoover delivered the news, but after he walked out of the room, Dan wiped her eyes, looked at me and said, "Wow... That was scary!" We erupted into peels of laughter. A few days later, as I was moaning and groaning, Dan said, "Mama, I'm not going to die. I'm going to get new lungs and be able to exercise and dance and breathe... But, even if I die, this isn't the end." And, I know that. I know that what my wise-beyond-her-years, 17-year-old child says is true. But, I want her here with me. I don't want to have to figure out how to live in a world that doesn't have Danielle in it.

Hence the power of what I don't know... Right now, I have a student with severe language delays. Instead of "I don't know", he says, "I can't know"... And, I have begun to think that maybe, just maybe, he isn't the one with the delay. "I can't know" pretty much sums up my state of affairs at this point. I'm going to have to rely on God to carry me through the next step, having no idea what the future holds. But, I can choose to be a crumbling mess, or embrace the gift of not knowing. I can't learn this until I've gone through it... And the only way around it is through it.