Dreams Come True

The 33rd anniversary of Holly's diagnosis is coming up on December 12. She was diagnosed one day before her seven-month birthday. This is always a hard time for me. I can't held but go back to that day.

Actually, I must begin a couple of days before the diagnosis with a phone call from my sister. who bravely called to insist that I call our pediatrician and demand a sweat test. She had just spent time with us at Thanksgiving and had seen how much Holly ate, experienced the awful digestive problems she had and realized that in spite of the huge volume of food (Holly would consume a plate of food equal to what the adults ate.), she was still gaining no weight. So, Robyn, was willing to offend me for the sake of the life of my child, and I love her for that. Fortunately, God's timing is always perfect, and the day before Robyn called, I had read an article about CF and how kids with the disease often taste salty. That was something I had commented on for months but had never relayed to the doctor, not realizing it was of any significance.

Thus, when my sister called about the sweat test, I knew she was right. I knew I had to call Holly's doctor yet again and tell him that something was wrong with my child. Robyn was willing to pay for a flight to her home where her pediatrician had already agreed to do a sweat test if ours was not.

When Holly's pediatrician called me back, he started in with the same old song and dance of "normal is a range," etc., etc., until I said the magic words, "But she tastes salty." Then, he was momentarily silent before quietly declaring, "Oh, my God. I'll call Children's Medical Center immediately to schedule a sweat test as soon as possible. They'll call you back with an appointment."

Two days later my mother's cousin picked us up to take us to Children's Medical Center in Dallas for the sweat test, so I wouldn't have to endure the anxiety of the day and the bad news, if it came to that, alone. We went to Children's and the tech patiently explained the procedure, and I was relieved that Holly didn't have to be stuck and wouldn't feel pain. The tech cleaned Holly's wrists, stimulated them with the electrodes, put on the gauze (which had first been weighed), and then wrapped her arms with plastic wrap to encourage perspiration.

We spent about half an hour in the hallway trying to keep my little one occupied. She was an active baby who had bursts of energy in which she was busy sitting up, crawling, trying to stand and playing. Because of malnutrition, her energy usually didn't last long before she just wanted to be held or take a nap. At that particular time, wouldn't you know it, she wanted to play on the floor, of course. But all I could think of is: "This is a hospital, for goodness' sake. There couldn't be a worse place for her to be on the floor. I'm not putting my baby down there!" So, we passed her back and forth and took walks up and down the hallways, trying to engage her in anything that looked even remotely interesting. Fortunately, she was a beautiful and winsome child to whom people were naturally drawn, so we were able to occupy her with the help of other people who found her almost as delightful as I did.

Finally the time passed, the plastic wrap was unwrapped and the gauze was weighed to determine whether it contained enough sweat to test. Fortunately the answer was yes, and we were allowed to go.

My cousin decided to treat me to lunch at a lovely tea room, which I could never have visited on my budget. She wanted to take my mind off what was going on, so we went to this swanky eatery, which seriously frowned on the presence of babies. The maitre d protested, but was no match for my cousin who always managed to drop names, threaten, cajole or intimidate until she got her way, so we were seated in the calm, darkened interior and served wonderful entrees that I didn't taste or enjoy, because my mind was focused on the results of the test. We talked and talked. Anything to take our minds of the waiting, the endless waiting, for the test results.

The somber tone of the day was punctuated with humor, however, when I took Holly with me to the Ladies' Room. It was only then that I discovered that my face and neck were covered in orange splotches from the puréed peaches I'd fed her as I held her on my lap. (Since the tea room didn't normally allow babies, there were no high chairs for her, so she sat with me as we ate.) Naturally, I was horrified as I tried to remove the dried peaches from my face with one hand as I held Holly with the other while sophisticated ladies in their designer dresses and de rigeuer haughty looks came and went as I remained trying desperately to scrub away the last of my daughter's meal. Though mortifying at the time, it gave my cousin and I something to laugh about as we returned to the car.

I have no idea how we spent the rest of the day. I just remember the mental argument that ran over and over through my mind: "It can't possibly be something as bad as cystic fibrosis. I mean this is me. This is us -- our baby. It couldn't happen to us, could it? But the symptoms all fit. It would explain everything. But, surely, it's something simpler, not something quite so serious," though at the time I had no idea just how serious CF was.

Finally we were home. Holly was exhausted, so I put her down in her crib to sleep. I thought I would lose my mind as I waited for the phone call. Thirty minutes, 45 minutes, an hour, an hour and a half passed as we waited past the time we were promised an answer. Finally, I called the hospital and was told I'd have to wait until the morning to get the answer from Holly's pediatrician. I didn't think I could survive the night without an answer. Turns out I should have forced myself to wait.

I called our doctor's colleague, who agreed to get the results and call us. I waited by the phone as my cousin sat close by. The phone rang and I grabbed it to hear the doctor's voice inform me that the test was positive. Holly had cystic fibrosis. Instead of being kind and leaving me in my blissful ignorance until we saw Holly's doctor in the morning, he felt compelled to fill in all the details. He had never met me, had no idea of my mental or emotional state and didn't ask if I was alone or had someone with me. This cruel and uneducated professional proceeded to tell me that my 7-month-old daughter sleeping in the next room would probably die before her second birthday. I slumped against the stove as the life literally drained out of me. I remember that I was standing upright, and, then when he told me that, I felt as if a tidal wave of grief washed over me. The pain was so intense and overwhelming that I knew I could not survive it, and then I felt the life force drain out of me. I felt it leave my head and wash down through my body and out my feet. All that remained was my mental capacity to deal rationally with what to do next. All emotion had vanished.

As I hung up the phone, I told my cousin, "Holly has cystic fibrosis, and the doctor says she'll probably die before she's two. It will be time for dinner soon. I'd better get started on it." And that was that. I was in shock -- emotional shock -- a gracious coping mechanism God built in so we can cope with just such situations.

Somehow, we got through that awful night and went to visit the pediatrician the next morning. He was pale and somber, and the guilt he felt was palpable. He shook his head as he apologized and said, "I can't believe I missed it. I'm so sorry."

The good news was he educated us about the true facts of CF. It seemed strange to be relieved to learn that the average life expectancy was 18 years old. But, after the news of the night before, it felt like a reprieve from a death sentence. There was much more to learn and more to live. But here we are, happily, 33 years later. Holly's feeling the effects of CF, but she's achieved the dreams she once thought might be out of reach. She's married to a man whom she loves and who adores her. They have a precious 10-year-old daughter who is the light of both their lives. What was only a dream that I was afraid to hope for 33 years ago, has become reality, and I thank God for dreams that sometimes do come true.