Baltimore Copyright 2002 Owned by the Arthur: Debra McCarty All rights reserved.
Sarah loved helping others. This book is made available to go to that end.
This book is dedicated to the many angels on earth who touched our lives with tenderness, compassion, and love and to our special angel in heaven ... Sarah.
Special thanks to:
Tanya Roylance for her masterful editing skills, time and patience throughout the many rewrites; Chris Dexter for pointing me in the right direction; Elizabeth and Mark Stoddard, and Tina Costello for their very helpful scrutiny; Steve Draeger, Peggy Helfman, Linda Groves and our loving parents, Norm and Marge Draeger and Jim and Dorothy McCarty, who urged me onward each time I decided
to give up; and Ken McCarty for his patience, support, and continual love.
Chapter One
I knew I was going to have a handicapped child. That is, I’ve known since the age of twelve. Often as a youth I could be caught daydreaming rather than pursuing the task at hand. Like so many other times, one day I lay on my bed pondering my world to come instead of cleaning the room as instructed. With a deep sigh I wondered aloud, “What will my future hold? Will I do anything special or noteworthy?”
That’s when it happened. In a very gentle voice, a whisper I automatically knew was not of earthly origin, I heard, “You will be a mother to a handicapped child. This will be a very sacred responsibility.”
Immediately I recognized the message, as if it had been spoken to me previously, in a time before this earth life. Unfortunately, there the communication stopped. No more information was given, no timetable indicated, nor no name of the disability to be.
At once I assumed this child would likely have Down syndrome, probably because it was one of the few disabilities of which I knew. The thought did not displease me. Instead, I saw it as a profound
assignment. From that point on, I looked forward to the prospect of having a special need child someday, knowing this individual would be a very precious soul.
By college, I met Ken McCarty. We fell in love and talk turned to marriage. Though I had never told this earlier experience to anyone else, I felt compelled to share it with him. Candidly I stated, “There is something I need to discuss with you. It’s very important and, after I tell you, you may not want to marry me after all.” Luckily for me, this didn’t affect his decision and we were married.
With the birth of each of our children, I wondered if he or she would be our disabled baby. When I as pregnant with Tanya, our firstborn, I was teaching special education classes at the local junior
high school. Once a week, our class shared a swimming pool with a group of physically disabled students. I would look at these children and wonder if my child would be among them one day. Fortunately, Tanya was born without problems.
My next pregnancy, however, met with complications. Because of toxemia, delivery was induced six weeks premature. This presented a much greater risk, particularly to the baby’s lungs. Additional worry came upon discovering the cord was wrapped three times around the infant’s neck. Ryan Robert McCarty entered the world a dark purple.
Oxygen was used until finally Ryan’s skin became an acceptable pink. Immediately I anticipated brain damage. My students’ records quite often indicated they had developed learning disabilities due to lack of sufficient oxygen during birth. Voicing this concern to the physician, he assured me Ryan was okay.
That night, however, two doctors came into my hospital room.
“Mrs. McCarty,” one doctor began. “We have some very bad news. Your baby is not doing well. He is having something called dusky spells in which, for some unknown reason, he frequently quits
breathing. We don’t know if your son will make it through the night.”
As the doctors left, I dropped to my knees. “Please God, help my baby,” I pled. “Please, please, don’t let Ryan die. I need to get to know him. Please don’t make it be this baby . . . not this baby!” Even as I spoke these words, it seemed so foreshadowing.
Fortunately, Ryan was to live and time showed he would be perfectly normal. “Perhaps,” I pondered, “my impressions of having a disabled baby have been wrong all these years.
My third baby, however, was less fortunate. Toxemia had advanced earlier than before and I was bedridden only after four pregnancy. As I lay resting in bed one day, a very strong impression suddenly flashed over me; we were going to have another baby, besides the one I was now carrying, and unlike my light blonde, nearly bald babies, this new arrival would be born with lots of dark
hair. To my surprise, the impression also included that this next baby would be coming quite soon, even before my current baby could be born.
Confused, I told Ken of my experience and stated this additional baby could not come in the time frame I was told. How could I be pregnant with two different age babies at the same time? The baby I
was then carrying was over five months along. “I just don’t understand,” I exclaimed.
With time the explanation would come. The next month I knew something was seriously wrong. I was now more than six months along and was having severe cramps and chills. An ultra sound was
performed, indicating the baby had no heartbeat. Surgery followed. I was numb with grief.
Despite trying to gain control over my emotions, grief continually overwhelmed me. I wondered if I could ever be happy again after losing this baby I had so looked forward to holding. But to my
astonishment, the very next month I was pregnant again.
I was shocked another baby would be coming so soon. Then I remembered the whispering of the spirit I had experienced earlier and I knew this was the child I had long been expecting. Impressions
flashed into my mind. I understood this baby’s birth was to be no accident. It was intended for her to have a specific disability. I was to share this knowledge with others. We named this precious baby Sarah Elizabeth, which means “Princess Promised by and Dedicated to God.”
Sarah’s beginnings were plagued with problems. As her condition was so poor at delivery, the nurses instantly rushed her to the intensive care nursery. We had no time to hold our little arrival. All
I could see as they swept her off was a full head of thick, black hair.
“It is my dark-haired baby!” I thought with amazement. How I longed to hold my daughter close and look into her face.
The doctor soon interrupted these thoughts announcing, “I never thought your baby would survive. She was blocked by your pelvis bone and I couldn’t budge her. I just kept wondering how I was going
to save you.” Due to complications from my diabetes, Sarah weighed in at a hefty eleven pounds, five ounces.
The doctor continued, “I’m very sorry to tell you this, but when your baby was trapped in the birth canal, I had to pull on her arm. It was the only thing I could get a hold of. I’m afraid your baby may be permanently maimed. We are taking x-rays.”
Reports showed a dislocated shoulder blade and broken arm, but within time it was obvious there would be no lasting harm. Our doctor shared, “Your daughter is a very lucky girl. This is nothing less than a sheer miracle in my book.”
Sarah was too sick to be brought to my hospital room, so I walked to the nursery, anxious to get a glimpse of my beautiful little girl. Looking into the incubator, I gasped in shock. There lay a
massive, deformed baby. One leg was swollen twice the size of the other, the abdomen was unusually extended, and the face was swollen with just a slit for the eyes. My father aptly called her the sumo
wrestler.
After the initial shock, my first thought was, “So this really is my disabled child.” I then thought with determination, “I need to love this baby in a very special way, for certainly no one else will probably ever love her. ”
Sarah’s looks, however, did not cause ten-year-old Tanya to think her baby sister was anything but beautiful. As she stood with her face pressed to the glass, admiring Sarah through the nursery window, a group of people joined the scene to look at their newborn. All of a sudden one of the group spied Sarah and called to his friends, “Come here! Come here! Oh, my! Come look at this baby—it’s a monster!”
As they gazed with gasps of astonishment, Tanya stood back, her feelings crushed, tears of sorrow streaming down her cheeks. Four-year-old Ryan’s only concern was where this potential little
intruder would sleep. He was completely oblivious to any possible problem.
As for Ken, he just kept taking video after video, snapshot after snapshot, simply thrilled and grateful for this precious new daughter. He seemed to be totally unaffected by Sarah’s appearance.
More bad news soon followed. “Sarah is having extremely low blood sugar,” the doctor announced. “We will need to inject glucose to help raise her levels.” Soon needles and tubing were attached all over Sarah’s body, from the soles of her feet to the tip of her head. The nurses struggled
to find veins large enough to poke. A nurse later commented, “Sarah is so bloated with water. Whenever I try to insert a needle, water squirts out of the site instead of blood. She is a very sick baby.”
Eventually, Sarah’s sugars improved and she was released from the hospital. As a few additional weeks passed, I realized Sarah’s appearance had radically changed. Gone was the added water and,
therefore, the strange deformity. In fact, she changed into such a beautiful baby, people commented she looked just like a dainty porcelain doll. Her bright blue eyes and pale skin were so dramatically
set off by her already long dark hair. “Sarah isn’t disabled after all,” I concluded with relief.
Within additional weeks, however, other problems surfaced. For one thing, Sarah wanted to continually nurse. Friends advised, “Don’t let her nurse so much! She needs to learn how to get on a schedule. She’s just spoiled.” But some inward feeling told me differently. I continued to nurse her on demand, all day, all night.
Next, a major rash covered her face. Then I noticed her diapers were not normal. Instead, they were runny, lime green, and extremely foul. I talked to the pediatrician by phone and she advised this was perfectly normal for a nursing baby. I thought, “If this is true, why hadn’t my other babies’ diapers looked the same?”
By this point, Sarah also developed a nasty cold. Since her abnormal eating and unusual diaper problems continued, I went to the doctor’s office. I even brought in a diaper to show the doctor. Again the doctor assured me everything was okay. “Sarah only has a little cold,” the pediatrician announced. “You are simply worrying too much.”
The following morning I turned on the TV just in time to hear a talk show host say, “So if your baby tastes salty, get medical help immediately, for it is a matter of life and death.”
I froze. My stomach turned. My knees buckled. Sarah tasted salty! I had not heard what this condition was called. I thought of phoning the television station to get the name of this mysterious
symptom, but hesitated. Instead, I quickly forced the words out of my mind, not wanting to believe what I had heard, hoping this symptom would soon go away.
One night when Sarah was five months old we were eating dinner at the kitchen table when Tanya suddenly announced, “I’m so excited! I don’t have to go to school. It’s finally spring break! Hurrah!”
Turning to Ken, Tanya coaxed, “Dad? I want to go somewhere. Everyone at school gets to go on a vacation. We never go!”
Ken thought for a moment and then said, “You know Tanya, you are right. It has been way too long since we’ve done something fun. I’ve got an idea. Why don’t we go to California and visit relatives?
We can do it right away, maybe even tomorrow morning. That way we’ll have a whole week to play before you need to be back at school! I was planning to take vacation time anyway. Say, we could even go to Disneyland.”
Turning to me, he asked, “How does that sound to you, Deb?”
Tanya and Ryan, of course, thought this was a terrific plan. They began jumping up and down, clapping their hands in delight. I hesitated. “How can we possibly do this?” I questioned. “There is no
way I can get the clothes gathered, washed, and packed that quickly.
Besides, it seems a bit rude to announce to relatives that we are coming to invade their homes on such short notice. It reminds me of a scene out of Chevy Chase’s movie, Christmas Vacation.
Ken urged, “I’ll give everyone a call and if they don’t mind, let’s do it!” Despite the reasons to not go, the more Ken talked, the more I, too, knew we should. We even began to feel a strange urgency.
Yet, there was still one more reason to hesitate. By this point Sarah was doing worse. It seemed foolish to leave for California when Sarah was not feeling well. But I had just returned from yet another doctor’s appointment, still concerned about her ever-increasing cough. Once more the pediatrician had told me not to worry. So, at this assurance, we decided to proceed.
As we drove out of town I turned to Ken and said, “Something is really pushing us to go to California. I can feel it strongly. Maybe we’re supposed to be there. Maybe someone is going to die and we need to say a good-bye.” Ken nodded.
There seemed to be a different feeling with us on our journey to California. It was not so much one of sadness, but solemnity. It seemed almost a preparation for what we might find awaiting upon our
arrival.
Usually Sarah loved to travel, happy and content to sit in her car seat while watching the scenery flash by. Not this time. Instead, Sarah began whimpering, pulling in pain at her ears. As the time passed, Sarah’s pain intensified. She now screamed in agony.
We pulled to the side of the road, hoping our comfort would assist her pain. Instead she continued to cry. Not having any other resources available, I pled, ”Ken, please give Sarah a blessing.”
Ken complied. As he placed his hands on Sarah’s head, she hollered even louder. Ken continued, pronouncing, “You will be comforted and your pain removed.” Immediately Sarah relaxed.
Our family has witnessed many healing prayers before and after this time, but this particular occasion was unique. A feeling of great love and protection filled our car. It was overwhelming and lasted throughout the remainder of the travel. We were now so overcome no one could talk...
Finally, several minutes later, ten-year-old Tanya said in a little, soft voice, “Do you feel what I feel?” In that moment we felt God’s love. We were not alone.
After arriving in California and visiting relatives, our next stop was Disneyland. All the uncles, aunts, and cousins came too. As we trailed through the various rides, Sarah’s aunt, Peggy Helfman,
commented, “Debbie, you are so lucky! I can’t believe how well behaved Sarah is. I’ve never seen such an undemanding baby.”
Inwardly, I was worried, though. “It doesn’t seem normal for a healthy child to be so docile,” I thought. “And, she seems so peaked.”
The next day Sarah’s cough was worse. Even though we had just visited the pediatrician, we decided to have Sarah seen by a doctor again. Unfortunately, an appointment on the spur of the moment could not be scheduled. Since my brother, Steve Draeger, was expecting our arrival that afternoon, we abandoned the idea.
The following day Sarah was struggling even more. We now felt an urgency to get her help. Dara, Sarah’s aunt, arranged for her to be seen by their family’s physician. The appointment was set for that
afternoon.
We drove to the doctor’s. When Dr. Qaqundah entered the examining room, Sarah was quietly sitting on my lap.
“Where is Sarah?” the doctor asked.
“Right here,” I responded.
“Well, my goodness, I thought you were holding a most beautiful porcelain doll! What an exceptionally pretty little baby.” Throughout the exam he kept repeating, “Yes, yes, oh my goodness! Yes! Yes!”
After the lengthy appraisal, the doctor concluded Sarah had double pneumonia. Catching us off guard, he asked, “Would you mind if I kissed your baby on the forehead?” We nodded our approval.
He picked Sarah up and kissed her. It came back to me. “Salty! The TV program I saw said that if your baby is salty, get medical help immediately. It is a matter of life and death!” The physician announced, “I’m going to waste your time and money and run a few tests on Sarah.”
We were sent to the lab on another level of the hospital and told to sit in the waiting room. Shortly a lab worker appeared. “This is a very serious test. Only one in a thousand doctors would order it,” he
said. “I’d like to do it for you today, but it requires special equipment I’ll have to order. We won’t be able to do the test until tomorrow morning.”
"Thanks anyway,” Ken replied. “I think we’re going to skip the test and take Sarah back to Oregon. She has pneumonia and we need to get her some help.
“I understand,” the lab technician said. “But definitely get this test taken when you get home. It’s very important.”
My brother Steve had been waiting in the hospital lobby for our return. Hearing our predicament, Steve said, “My scuba diving partner, Al Smith, works at a lab. I’ll call him. Maybe he can help.”
Steve dialed his friend. After explaining our problem, Al responded, “A couple was just in here with a baby. Was that your sister’s baby?” It turned out Al was the lab technician we had just met.
“Gee, I felt really bad turning them away,” Al told Steve. “The test is seldom given. We don’t even keep the equipment here. Have your sister bring her baby back. I’m going to order it stat. I’ll make
sure their baby is tested now. There is a very slim chance your niece would have the illness the doctor is investigating, but it is too important a test to ignore.”
Soon the testing was arranged. Al put a solution on Sarah’s leg and then wrapped it in gauze and plastic for a time. To me it seemed an eternity. This was called a sweat test. Its purpose was to determine how much salt from perspiration was being lost. After the solution made Sarah’s leg sweat, she was hooked to a machine and monitored. The indicator immediately jumped to the far right. Al said, “I’m doing this test again. We need to be sure.”
Al then repeated the procedure. Hooking Sarah up to the machine once more, the indicator again jumped to the far right. Al responded, “You have a very sick little girl.” I overheard a lab worker in the far background whisper, “She has cystic fibrosis!”
My mind was muddled as I tried to understand these words.
“Cystic Fibrosis . . . . Cystic Fibrosis. Had I ever heard of that before? Maybe I knew it from a March of Dimes poster. Does this mean she will be crippled?” I wondered.
Turning to Ken, I asked, “What is cystic fibrosis?” Ken shrugged his shoulders in equal bewilderment.
Returning to Steve’s house from the lab, the doctor soon called. We learned he had recently retired as head of the Cystic Fibrosis Center in Los Angeles and gone back into private practice on a part-time basis.
“I can’t believe I’m calling you over the phone. I usually sit down with parents in my office, or at least have a social worker visit the home,” he said. “But because of your need to return home
immediately, time is limited. If it is okay with you, I’d like to discuss Sarah’s lab results over the phone. Sarah has a disease called cystic fibrosis. I’m terribly sorry to tell you this, but it is terminal. I almost get the impression, though, that deep down you knew. You are both so calm.”
Calm or numb, we were told to return to Oregon and immediately get in touch with the Cystic Fibrosis Center in Portland, Oregon. After a final sad farewell dinner with relatives, we left for home.
Ken and the children slept as I drove on the freeway. For the first time since all this happened, I now had time to think. As each minute passed, I found myself becoming increasingly angry — angry at God.
So she has a terminal illness, huh! That’s a bit more than telling me she would be disabled! Dying wasn’t included in this deal! Well, if that’s the way you want it, fine! I’m not going to bother teaching
her. I’m never going to discipline her. What would be the point? She’s just going to die anyway!” I angrily thought through tears. I glanced at the car speedometer, registering ninety miles per hour.
“Good,” I thought. “I hope we get in a wreck and all die!”
Just then, through the rear view mirror, I saw a red light flash and knew I was in for a ticket. But for some unexplained reason, the policeman turned off his lights. I pulled my emotions together as well as I could and reduced my speed, though I was in no way calmer.
It wasn’t until half way to Oregon before I began to see pieces of a puzzle coming together. I realized that in Oregon Sarah had not received proper care or a correct diagnosis. We had decided to go to California on a moment’s notice, almost feeling compelled. Traveling, we had felt such a consuming love with us. We had been introduced to a doctor who had just retired as head of the Los Angeles Cystic Fibrosis Foundation.
In fact, had we been able to make a doctor’s appointment while at Peggy’s house, we would not have met the appropriate doctor. Most likely we would have received another incorrect diagnosis. And what about Steve’s friend, Al, who just happened to be working at the very same hospital we were visiting and was able to make special arrangements for us?
Was this all a coincidence? “No,” I said aloud to myself. “These events were not by chance. They were direct help from Heaven.” I marveled at the interweaving...
Chapter Two
After arriving home, we immediately took Sarah to the Cystic
Fibrosis Center in Portland, Oregon. Once again the sweat test was
performed. This time we waited in trepidation. Unfortunately, the
results proved conclusive. Sarah definitely had cystic fibrosis.
Several doctors joined us for a consultation. One doctor began,
“We are saddened your little daughter has cystic fibrosis, but we will
try our best to help her. It is important for you to understand cystic
fibrosis is a genetic disease, but it is not your fault she must bear this
burden. It was out of your control in knowing this would happen.”
“Sarah was born with this condition,” another doctor volunteered.
“It is not contagious. Sarah did not catch it from anyone’s illness, nor
can she spread it to another person. Although there are treatments to
postpone deterioration, there is no cure.”
I was numb, barely comprehending his words.
Another physician added, “In order for the cure to become a
reality, first the defective gene has to be found. Finding the cystic
fibrosis gene can be comparable to looking for a needle in a haystack,
only the hunt for this needle would be like looking for it in every city,
of every state, of every nation, as well as distant planets in outer space.
Don’t expect the gene to be found. It is too remote a possibility.”
“The main problem entails the lungs,” a third doctor continued.
“They will eventually give out. Sarah probably will not live very long.
Your best hope is to just make her as comfortable as possible until
then,” he concluded.
“Hope? What kind of hope is that?” I thought in confusion.
“Why are they making Sarah’s future seem so bleak?”
Next, the doctors went into a lengthy explanation of cystic
fibrosis. As hard as I tried to concentrate, I was a bundle of nerves.
Much of the conversation was simply not penetrating my mind.
One doctor emphasized, “Cystic fibrosis, or CF, as it is
commonly called, is the number one genetic killer of children and
young adults in America today. Among diseases, CF causes more
childhood deaths then polio, diabetes, or rheumatic fever combined.”
Again he emphasized, “CF is always terminal.”.ONE SMALL CANDLE
* With medical advances, longevity has increased for many
since this time.
22
The doctor stressed, “CF damages several organs in the body, but
the lungs are normally the most traumatized. Instead of producing
normal, thin mucus, CF lungs produce abnormally thick, sticky
secretions, comparable to glue. This excess mucus obstructs the
airways in the lungs. Therefore, germs are not flushed through,
resulting in chronic cough and debilitating infections. Scar tissue
forms, deteriorating even further the once healthy lung tissue.”
Another doctor stated, “At some time during their lives, nearly all
patients with CF develop lung disease. Respiratory complications
result in more than 90 percent of their deaths. In essence, these patients
slowly suffocate. Unfortunately, Sarah already has received the
beginnings of this lung destruction.”
“I’ve never heard of CF,” I responded.
“That doesn’t surprise us. Most people haven’t,” the doctor
continued. “Statistics estimate only one out of every 2,000 babies in
the U.S. is born with CF. Unfortunately, at this time most doctors do
not fully understand this disease or its symptoms. That is why your
daughter was not diagnosed at birth, despite her severe case.”
“Her severe case?” I thought.
The third physician added, “Before the l930s, few babies with CF
survived. It was not until the 1960s a portion of the CF population
began living past 11. Currently, in 1983, many children born with CF
might live to 18. * You are by far luckier than your predecessors!”
“It doesn’t feel lucky to me knowing my child could possibly die
before attending college, marrying or having children,” I thought in
silence.
“What can we do to help Sarah?” Ken asked.
Immediately we were bombarded with more information, this
time on chest percussion. One doctor explained, “We need to help
Sarah clear the thick mucus in her lungs so she won’t get so many
infections.”
Ken was handed a sheet of instructions demonstrating ten
different positions Sarah was to be pounded. It was to be a literal.DEBRA MCCARTY
* Testing for this now exists.
23
pounding, to loosen her excess mucus each day. Some positions
showed pounding on the front, back, and sides of her lungs. Some
positions even were to be performed as Sarah was held upside down.
I couldn’t comprehend these therapy sessions were to last a half hour
minimum. Again, the information seemed mind-boggling.
“Practice pounding on this,” one physician said, handing me a
doll. “It’s important to learn the correct technique of hand cupping so
Sarah’s little body will not hurt more than necessary.”
My thoughts raced. “How could we allow our baby to be held in
so many unusual and uncomfortable positions? Were we really
expected to do this despite the fact she might cry? Wasn’t this just a
bit abusive, pounding on a helpless infant?”
One physician announced, “We need to set up appointments for
sweat tests for your other two children. We need to rule out the
possibility of either of them having this disease as well.”
I was dumbfounded. The thought was not even imaginable!
“How could we possibly have more than one child with cystic fibrosis?
Tanya is ten years old. Ryan is four. Certainly we would have already
detected this disease if it was present,” I stated.
The doctor clarified, “In children who have mild cases of cystic
fibrosis, symptoms are not obvious, at least not until they are older.
These young children will often experience an occasional bout with
bronchitis or pneumonia, yet the disease of CF remains overlooked.
Sometimes, though, those with a mild case at the beginning can lose
ground quickly and lung deterioration occurs at a rapid rate later in life.
There are no guarantees or patterns to this disease. There is no way to
be certain one child will not eventually outlive another. It is essential
for your other children to be tested and receive as much help as
possible if they, indeed, have this illness. The quicker we can diagnose
and provide medical help, the longer they can live.”
The doctor continued, “As to having more than one CF child in
a family, it is indeed possible. That is because both you and Ken are
carriers of the CF gene. We know this only because you have a CF
child. There is presently no test available to determine carriers. * If.ONE SMALL CANDLE
24
only one of you carried this gene, none of your children could acquire
CF. Only when two CF carriers unite can children be passed the
disease.”
“Marriages between carriers occur about one in every four
hundred,” the other doctor stated. “In these marriages, each pregnancy
has a 25 percent chance of having CF. The possibility of CF always
exists. I have seen families where three out of their three children have
cystic fibrosis. I have also seen a family with ten children where only
the youngest child was born with CF. As you can see, the 25 percent
chance is not based on one in four births, but rather, each individual
pregnancy has one in four chances of inheriting the CF gene. You are
not alone. One in twenty people are carriers.”
My heart ached with this knowledge, knowing the role I carried
in Sarah’s affliction.
Toward the end of the clinic visit, we were asked if we had any
more questions. The immediate query out of my mouth was, “If Sarah
has to have therapy performed twice a day for the rest of her life, how
is she going to go to college? Who will do her therapy?”
The CF doctors stared incredulously at me, their mouths open.
After a long pause, the only comment was, “Well! My goodness! We
have never been asked that question before! I’m sure if Sarah lives that
long, something can be worked out!”
Perhaps I was in shock, a common early reaction. No doubt I was
in a state of numbness and denial. I could not accept that Sarah would
die then, any more than I could accept this fact later. To hope for a
cure was paramount. I couldn’t visualize anything else. I had to cling
to hope.
~ ~ ~
On our drive home from the doctors, I tried to comprehend all
that had been presented. Tremendous guilt enveloped me, knowing my
role in Sarah’s affliction. Tearfully I asked, “Oh, Ken, why did we ever
get married? It was a mistake. How could we have done this?”
Ken tenderly spoke, “I have wanted to share something with you
for a very long time. Before our marriage, when I was serving a
mission for our church, Church of Jesus Christ of Latter-day Saints, in.DEBRA MCCARTY
25
New Zealand, I continually had an impression come over me as we
would share the gospel.”
“It came each time we showed a film entitled, Man’s Search for
Happiness. This film depicts a family with a young daughter of about
twelve years old who has a serious illness. One scene reveals the father
gently lifting his daughter into his arms from a picnic blanket that had
been spread on the ground. It is a beautiful fall day with the trees in
brilliant autumn colors. The young girl clutches a branch of leaves in
her hand as her father tenderly places her in the car.”
“The narrator shares that none of us know when our time on this
earth will be finished and that some will face challenges they don’t
fully understand while passing through this life’s journey. The next
scene portrays the parents dressed in church clothes, returning from the
funeral of this young daughter.”
“Each time I watched these parents go through the pain of losing
their daughter, and I saw this film countless times in the two years I
was there, I received an inner confirmation in my heart that I would
someday have the opportunity to be the father of a child who would
return to Heaven early. It didn’t scare me as I had these feelings.
Instead, it was a pure and complete understanding this would be one of
my earthly responsibilities.”
Without batting an eye, Ken added, “Debbie, everyone carries
potential gene defects. Who’s to say if we had married someone else,
we still wouldn’t each have had a child with some disease?” His words
rang true. My guilt was greatly eased.
~ ~ ~
Not being able to schedule the sweat test for our other two
children until the following week, we lived each day in sheer terror. I
wasn’t overly worried about Tanya, as she displayed no symptoms out
of the ordinary. But I became quite disconcerted over Ryan. His
immune system had never kicked in to full gear. From the time he was
in the intensive care nursery, he had been constantly sick. I feared he
too might have CF.
The testing was finally performed. To our great relief, we were
told both Tanya and Ryan did not have CF. But then the doctor.ONE SMALL CANDLE
26
announced, “This does not mean your children do not carry the CF
gene, which could eventually be passed on to their posterity. Each of
these children has a 50 percent chance of being a carrier. If either is a
carrier and then marries another carrier, any of their babies could have
CF.”
As relieved as I was in knowing both Tanya and Ryan had been
spared this CF tragedy, I couldn’t help but worry what the future would
hold. How could we possibly endure the prospect of one of our future
