Anger at God

When Holly was diagnosed at 7 months, I was first overcome with deep sadness. This beautiful baby for whom I had so many hopes for the future, the child I longed to get to know was threatened by an ugly disease. Would she be a girly girl who loved bows in her hair or would she be a tomboy with perpetually skinned knees? Would she be musical, like me? Or would she be an organizational whiz like her dad? Certainly she would be beautiful; we could already see that. We were hoping she would grow into a compassionate and caring woman. Now I was wondering if she would live long enough for us to learn any of those things.

As I was grieving the potential loss and the certain hardships in her future, anger began to bubble up.  It roiled and boiled in my stomach and forced its way upward, closing my throat until it ached, moving through my tear ducts forcing hot, salty tears to make my face wet and my nose run. Then it flew out my arm as I pounded the steering wheel. It screamed out my mouth, and I yelled, "NO! IT'S NOT FAIR!" I screamed at God and told Him, "You want to teach me something, you teach ME, NOT MY CHILD!" I was furious, so I raged on, as Shakespeare said, troubling "deaf heaven with my bootless cries." At least that's how it felt. Small and helpless as I was, I was shaking my fist at the God of the universe, and He wasn't answering.

He eventually did answer, though not from a booming voice from heaven or a bolt of lightning to strike me down for my daring insubordination, but by reminding me of things I'd read in the Bible. He reminded me of His special love for little ones and for ones who are frail. What God wanted from me was trust. Would I trust Him to take care of Holly in His own way even if it were painful for me? I wanted answers that I didn't get. I wanted to know that she would live a long life. I wanted assurance that she would be happy. I wanted God to take it back. Take the CF away. I wanted some doctor who would redo the sweat test and find the first had been wrong. I wanted to know she would be OK. After all, she was my baby. She held my heart. I knew that anything that hurt her would probably hurt me more. Certainly what happened to her would hurt more than anything that could happen to me. Since God didn't give me any of those answers, I needed to listen to the answers He was giving me to know how to deal with the future.

And then I knew. It was as if God had whispered to my mind. "Love her. Just love her. Love her more than you love yourself. Let me do what is best in her life, even if it means watching her hurt, even if it one day means watching her die." It's hard to imagine how or why a good God would let those things happen. But we live in a world that is not the way God created it. We are not the perfect beings God created us to be. Disease and pain entered the world when Adam and Eve took a bite of that fruit. In spite of that, God can make good happen out of awful, seemingly senseless situations. I don't know how He does that, but I've seen it happen.

I've learned a lot since that day 32 years ago. I've learned that it's OK to be angry with God. He's a big God. He has big shoulders, and He can handle my anger (and yours). I've learned that He faithfully hangs on to me and keeps me going when I see Holly hurting, and she's hurt a lot in her life.

Too much for her 32 years. Her first hospitalization came when she was seven and then yearly for the next few years. When she became a teenager, severe sinus disease and persistent polyps brought on more than 20 surgeries. In one when she was 17, the surgeon opened her up ear to ear across the top of her head. She shaved her head in preparation, and we learned that she looked pretty darn cute with no hair! That surgery brought on two very serious blood infections that nearly took her life. then in her 20s her life was pretty routine for a while, with hospitalizations here and there. It even got better for a while after her daughter was born.

Then 3 1/2 years ago she was diagnosed with a brain tumor. It had to be removed immediately. A long difficult recovery followed, along with six weeks of radiation that took her hair and her energy. Recently, still not completely recovered from that ordeal, she got the news of another brain tumor. This one inoperable.

In the midst of all the hospitalizations and illness, I watched God work good in her life as He brought her a loving husband who understood that she was worth dealing with all the crap of CF. God gave her a precious daughter who brings untold joy to all of us. I have watched Holly reach out to others who are hurting with boundless compassion, because she knows what it's like to hurt. She has become an amazing person, whom God uses to bring joy into the lives of people she doesn't even know. She is indeed the product of God's grace.

I still get angry at God sometimes, like when Holly told me about this new brain tumor. Now, however, I move quickly into gratitude for His immense goodness. After all, He gave me Holly. What could be better than that?  Still, four years later, he gave me another beautiful daughter, Vanessa. More proof of His love. When I was first told that Holly had CF, the doctor (woefully out of date) said she probably wouldn't live to school age. Then I learned that age 18 was 50/50. And just before Mother's Day we'll celebrate her 33rd birthday. If I had no other proof of God's love and goodness than that, it would be enough.

Our perfect child

Shortly after I learned I was pregnant with Holly, I began to be uncomfortable praying for a healthy child as I had for all my friends. I had a niece with a disability and my husband was close to a couple, each of whom had significant disabilities. I realized that in this broken world, not everyone could have a healthy child. With reticence, I began to share my thoughts with my husband only to learn that he'd been thinking the same things. So we prayed for the perfect child God had for us, whatever that meant. We also prayed that He would give us the grace and strength to deal with the problems or disabilities this "perfect" child would come with. So, it was a happy surprise that our tiny daughter, born on Mother’s Day, 1979, seemed so healthy.

We took her home, then brought her for her first visit to the pediatrician when she was 10 days old. Instead of losing the usual few ounces as we expected, she had lost a full pound. I was alarmed, but the doctor said it was really not a problem. I was breastfeeding and began to try everything I knew to make sure I had enough milk for her and to help her feed. Nothing seemed to help. She was two months old before she regained her birth weight of 7 lbs. 10 1/2 oz.

I'd never had a baby before, so I wasn't entirely sure what to expect, but her stools didn't seem normal to me. They were thin, runny, yellow or green, and sometimes full of mucous. And the smell never failed to run visitors out of the house. Again, I consulted the pediatrician, showing him one of her "dirty" diapers. Again, he was full of reassurances, telling me that she was fine, though I had a nagging feeling he was wrong.

Though it was all supposedly normal, he had me bring her to his office every week for a weight check. When I voiced concerns that her weight gain or stools didn’t seem normal, he would simply say that “normal was a range.”

Finally, when her weight didn't improve, he diagnosed it as "failure to thrive." I was cut to the heart – wounded. If he could only have seen how I held Holly and played with her. How I nursed her for 45 minutes every two hours to try to fill her little tummy. If he could have been there at night when I would heat two towels; one to go in between my stomach and hers as I lay flat on my back, holding her close, trying to ease the cramps that kept her awake and made her cry. When one towel cooled, I'd switch it with the one in the oven and repeat this over and over until 2:30 or 3:00 in the morning, when she was finally exhausted enough to be put her in crib to sleep.

At four months, we stopped breastfeeding because I “obviously” didn’t have enough milk. We switched to soy formula, which did nothing to help her, and still he insisted there was no physical problem.

At six months, we started her on solids. I ground her food from what I cooked, leaving out the seasoning. During the Thanksgiving holiday, we gathered with my family to celebrate. My sister, Robyn, observed with disbelief that I would fill Holly’s plate fuller than my own and that often within 30 minutes the food would reappear, undigested, in her diaper. Being a mom herself, she was shocked at the amount of food Holly was eating, while still gaining little weight.

About three weeks after Christmas, Robyn called me to ask if Holly was still eating so much. When I told her she was, Robyn asked how much weight she had gained. I told her that I thought maybe two or three ounces. Robyn was alarmed and told me it was imperative that we have a sweat test done. I confirmed her fears when I told her that Holly tasted salty. I had just read an article about cystic fibrosis, and the symptoms were too similar to ignore. That was when I learned the reason for the saltiness I tasted on Holly’s skin. Robyn made me promise to hang up the phone and immediately call our pediatrician and insist on a sweat test. I called him and received all the old reassurances – “normal is a range.” “But she tastes salty,” I said. He responded, “Oh, my God. I’ll call Children’s Medical Center and set up a sweat test right now.” He called back with an appointment for the next day.


Next: The Diagnosis