Today is December 12, 2012, the thirty-third anniversary of Holly's diagnosis. In 1979, it was the day before her seven month birthday. Every year since then I have grieved as I remembered the devastation of learning that Holly had cystic fibrosis. This year, however, I have decided to focus on the positive ramifications of that diagnosis.
There's no denying that learning my daughter had a chronic and fatal disease was unspeakably painful, the news was also, in a way, a relief. Now we had a name for the cause of the awful problems she'd experienced, and, with that name, came the knowledge of how to help her.
For seven months, my baby girl had struggled to gain weight and suffered with excruciating stomach cramps. She could only sleep at night if I lay on my back on the sofa with a hot towel between our tummies to ease the pain.
Holly was a beautiful baby from the time she was born. At the nursery window in the hospital, her daddy's friend had to make a way for him through the group of people crowded around in front of her bassinet to admire this lovely little girl. However, some days her healthy pink color would change abruptly to a deathly gray, which would snatch my breath away.
Most babies have a sweet scent that adults love. I noticed very early on that Holly didn't smell sweet at all even immediately after a bath. For some odd reason, that little detail made me very sad. Perhaps, it forced me to face the fact that something really was wrong with my precious baby girl. I also observed that she tasted salty when I kissed her, and, when she cried, her tears left tracks of salt behind on her cheeks. Unfortunately, I was unaware of the significance of that one fact, so I told family members but never mentioned it to the pediatrician.
At seven months old, she had only recently begun to eat more than rice cereal. However, because her body didn't produce the enzymes necessary to produce her food, no matter how much she ate, her little tummy never felt full. The amount of food she consumed was astonishing considering her age. No matter how much I fed her, she always cried for more. It had gotten to the point that her plate of food equaled mine, and she still didn't gain weight. When I fed her eight ounces of formula, she would scream for more. But, I quickly learned that if I gave her more, she threw it up, because it was too much for her little tummy. She was malnourished and weak.
Finally, on Dec. 12, my big sister called and forced herself to overcome her fears of offending me by telling me that I must call Holly's pediatrician and insist on a sweat test. God's perfect timing made me open to what she had to say; I had read an article the day before mentioning that the taste of salt on babies often indicated a disease I knew little about called cystic fibrosis. She instructed me to hang up from talking to her and immediately call my doctor. As we talked, he started in with his usual arguments until I interrupted him, saying, "But she tastes salty." He responded, "Oh, my god. I'll call Children's Medical Center immediately to set up a sweat test." I wrote about that day in my previous blog post.
Though the diagnosis was devastating, the good news was: now we knew there were treatments to help her. The lung disease, which had not caused problems yet, could be slowed. What a relief we experienced when we learned that, by using pre-digested formula and artificial enzymes to digest her food, the awful stomach cramps would stop immediately! She would gain weight!
Our guilt and frustration over our inability to help our daughter were instantly relieved with the knowledge that we could help her. Yes, we were forced to face the long-term realities of CF, but part of the reality was that the treatments available were going to make her better.
And they did. At that time, when children were diagnosed with CF, they were immediately admitted to the hospital. Actually, we were told that the whole family was being admitted in order to learn about CF and how to care for her. The nurse brought Holly's first bottle of pre-digested formula and told me that it smelled and tasted awful. I smelled it and decided to take her word on the taste. She said that Holly probably would refuse it until she figured out she wasn't getting anything else. She was wrong. I took Holly in my arms, offered her the bottle and, instead of refusing it, she sucked it down, hardly breathing, because she was so hungry. When she finished the bottle and I set it down on the counter, she smiled! The nurse was as incredulous as I. Holly smiled at the bottle, because, for the first time her seven-month-old life, her tummy was full. My heart burst with happiness and relief.
In the first month after her diagnosis, Holly gained two pounds. Two pounds! She gained energy. Our nights on the sofa with the hot towel ended. Now, we could put her down to sleep in her crib with a full tummy.
Of course, we struggled with the realities that the average life expectancy was only 18 and the problems that would inevitably be part of her life. We had no way of knowing that, at 33, she would be married with an amazing daughter and still doing well.
So with that perspective, today on the thirty-third anniversary of her diagnosis, I've decided to celebrate. As Holly put it, "Instead of a death knell it was a starting gun." What could I possibly add to that?
Wednesday, December 12, 2012
Wednesday, December 5, 2012
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.
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.
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