Quality Versus Quantity: CFF's New Regs

The recent changes in regulations set by the CF Foundation regarding contact between people with CF have caused tremendous controversy(http://www.cff.org/UploadedFiles/LivingWithCF/StayingHealthy/Germs/WhatYouShouldKnow/Lung-Health-What-You-Should-Know-About-Germs.pdf). Most of the parents and adult children, who grew up before these rules were instituted, vehemently oppose them. Our children grew up going to CF summer camps where they did group treatments with the kids doing aerosols and CPT (pre-vest) together. They coughed all over each other. Bowls of various types of enzymes were set out on the tables where they ate and the kids grabbed the brand and number they needed and swallowed them down.

At CF clinic, the kids played, talked and shared together as the parents discussed various CF topics and how they handled them. Every summer, my husband and I hosted a party for the CF families in our area. We had a picnic, and the kids, parents and doctors all swam together, using the huge home I.V. syringes as squirt guns. The doctors perfected the art of the two-shooter, surfacing from underwater with both hands gripping syringes loaded and aiming at whomever was closest. We all bonded during those times. The kids felt closer to the other kids and learned to see their docs as real people. The parents took advantage of the opportunity to talk over questions with one another and compare strategies on getting kiddos to do treatments or take their enzymes. And we laughed. Perhaps the laughing was the best and most healing aspect of those camps and summer gatherings. The kids laughed, and moms and dads laughed. Science has proven the healing value of laughter, and these get-togethers created opportunities for ample giggles, chuckles and guffaws. Those times served as a way to lighten the heaviness of thoughts and feelings associated with CF. We all needed that. We still do.

When Holly was diagnosed at seven-and-a-half months, one of the first pieces of advice her CF specialist gave us was to always choose quality over quantity. This was in the late 70s when the average life expectancy was only about 18, and he said, “I’d rather see her live 18 really good, fulfilling years than 21 sheltered, lonely years.” Those words guided our care of her throughout her life, and she has lived well because of it. Yes, she has limitations, but she has really lived and loved without regret. She has lost loved friends who had CF, but she has also celebrated the friendship and kinship she has felt honored to share with them.

She can tell you many colorful stories about her time with her CF friends in the hospital: like rollerblading down the hallways with a friend. When they were reprimanded by a security guard, they simply moved to the parking lot. Not to mention the time she snuck a buddy out to Denny’s. That was the night we got a call in the middle of the night being questioned by the nurses who wondered if we knew where our daughter was. Ahhhhh. I’ve always said that, “she may survive CF, but I’m pretty sure it’s going to kill me!”

She has lived life her way and been better for it. She believes, as most of us whose children grew up in the era before the strict new regulations, do that the value of the kinship and camaraderie that results from time spent with others with CF far outweighs any risks that their time together might bring. Every parent and adult with CF has to make his or her own decisions about contact with others with CF, and the Foundation has imposed certain rules that must be followed at CF events that, I believe, are to the detriment of the people who should benefit the most from those events.

Some people, like Holly, will continue to meet for lunch and visit, wearing masks, in each other’s hospital rooms. They value their time together and the encouragement they gain from it too much to be overly concerned about cross-contamination.

As I said, everyone must make his or her own decision on the subject. And, as Holly would say, “Thus endeth the rant.”

5 Ways to Maintain a Healthy Relationship With Your Adult Child

When our children are babies, we learn to cope with one set of difficulties, such as how to get them to take their enzymes without burning their mouths, ensuring they swallow the applesauce, or whatever medium you use before the enzymes digest it. And then there’s the challenge of finding a way to entertain those little ones, so they cooperate with treatments when all they want is to get down to crawl and play or toddle around.

Then they grow, and as they become adolescents, we plead, we cajole, we fight, we do everything we can to entice them to sit down and do their aerosols and chest physiotherapy (or pounding, as we called it) or the Vest. We beg them to “just say no” to cigarettes and so many of the other things that teenagers often experiment with. We do all this, because we love them, and we know the work, the commitment, the sacrifices made are worth it to help them grow up to live out their dreams, while all they want to do is just be “normal,” which, of course, to them means no pills, no treatments.

Then, for those of us parents who are blessed to have our children reach adulthood, we face a whole new set of problems that many of us find ourselves unprepared for. Now they’re independent. They answer to us no more. We’re thrilled as we watch them do what we’ve prepared them for. Perhaps they go to college, maybe they get jobs and live out of reach of our daily supervision. At this point, their independence dictates that they make the choices about their health care. We discipline ourselves to avoid calling every day to check up on them. Then, some of them marry. When that happens, their relationship with us changes for good. Now, someone else replaces us as caretaker. That’s right and healthy and good. But it isn’t necessarily easy for those of us who have, until then, been their primary caregivers. We restrain ourselves from jumping in when we’re sure we know best. We resist the urge to “check in” frequently.

Knowing that we must make that adjustment in our thinking and our behavior and actually doing it are two very different things. Everyone who has children experiences this to a certain point when their nest empties. However, those of us who have committed our lives to caring for our children who cannot be healthy and, quite honestly, might not survive without our time and attention, undergo a more significant loss and experience greater anxiety.

So how do we deal with this? I have been forced into a serious change of behavior by being told in no uncertain terms that I am not allowed to ask about Holly’s health. Ever. At all. That’s hard for any loving mother, but if I am to love her the way she needs to be loved, that’s what I do. Not easy, but worth it to maintain the relationship.

Perhaps if you, as moms of children/adults with CF, realize what independence means to them and take appropriate action from the beginning, you can avoid the extreme, painful and anxiety-provoking consequenses I’ve undergone. How do you do that? Well, obviously, I’m not exactly an expert at it, but here are my suggestions:

1.     When your child leaves home, be sure to talk about her activities, her interests, her friends, whether she’s enjoying her life and other questions that parents of healthy children would ask them. Avoid questions about her health.

2.     Let your child take the lead in discussions about health. If he wants to talk about it, he will. And, he will appreciate the trust you’re demonstrating in his ability to be an adult and take care of himself.

3.     Don’t automatically assume that you’ll go to clinic visits with your child just because you always have. Wait to be invited.

4.     When your child needs you, be there unconditionally. Don’t shotgun her with questions about what she’s been doing to care for herself and immediately tell her what needs to change. Ask questions only occasionally and offer suggestions only if asked. Let your intimate knowledge of your child and your intuition guide your behavior.

5.     Let his CF specialist be the advice-giver. It will go down much easier from an objective party than from mom. Resist the urge to intervene.

This major change in your relationship to your child will not be easily navigated. You will make mistakes. However, mistakes present an opportunity for your relationship with your adult child to grow and improve as you demonstrate trust and open a dialog about your fears and your child’s need for independence.

And last, develop a tough hide and hang in there. It’s worth it in order to maintain a close relationship with your adult child.

The Starting Gun

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?

It's Not Fair!

It's not fair. It's not fair that your child and mine were born with a chronic illness. It's not fair that, through no fault of their own, they have to deal with cystic fibrosis and all its attendant problems. It's not fair that so much of their days are consumed with simply staying alive. They didn't do anything to deserve this. They didn't put themselves at risk or make unwise decisions that would make CF a natural consequence of their behavior.

But then, life is not fair. That's an unfortunate fact we all must deal with at some point in our lives, at least if we're to avoid living out our days disappointed by our lack of constant bliss. Thankfully, we are not only plagued by disappointment but also surprised by joy. Life is a study in contrasts.

Our family is celebrating the news of a baby on the way. Vanessa, Brian, Brigid and Katrin expect to welcome a third baby in May. I am thrilled. Holly is thrilled.

At the same time, I wonder why one daughter enjoys the anticipation of new life while the other looks forward to more six more rounds of chemo in the hope of shrinking an inoperable brain tumor. This on top of her constant fight with CF. Vanessa requires more rest because of the tiny life growing inside her. Holly must rest, because the chemo drains her body of stamina and energy.

I am experiencing great joy for this new baby that is unmitigated by Holly's trials. Yet, I experience grief that Holly's life is, well, just plain hard. That's not to say it's devoid of happiness. She loves her husband and adores her daughter, dotes on her nieces and makes a point to find wonder in everyday life. If you read her Caring Bridge posts (www.caringbridge.com/visit/HollyLoughlin), you will see how she celebrates life every day in spite of everything.

Life isn't fair in other ways. For instance, Holly and Vanessa, precious human beings and gifts from God, were entrusted to me to nurture. Me! I don't deserve them. I couldn't possibly have done anything to make me worthy of them.

It isn't fair that I have a safe place to live with a roof over my head, a bed to sleep in, and heating and air conditioning. It isn't fair that, flawed as it may be, I live in a country where I can worship as I please. It isn't fair that I can leave the house safely and without worrying over the soldiers clustered on every street corner.

Life is not fair. My family is simply a microcosm that demonstrates the truth evident around the world and in every life. The contrast of the joy between Vanessa's life and the struggle in Holly's is just a slice of real life taken from a moment in time in our family. Joy and pain, simple and complicated, happiness and sorrow.

An amazing observation I've made in the midst of our personal circumstances is that Holly rejoices when Vanessa rejoices, and Vanessa weeps when Holly weeps, which is exactly as God intended. What a lesson for me to learn to rejoice and weep with those who are not part of my family but with whom I am connected, for as John Donne expressed, "No man is an island."

As far as our own daily lives and the difficulties we encounter that make us wince and squirm, what's important is what we make of it. We have a choice. As my pastor, Chuck Swindoll points out:
"The longer I live, the more I realize the impact of attitude on life.

Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home.

The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot c

hange the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% what happens to me and 90% how I react to it.

And so it is with you... we are in charge of our attitudes."

My hero!

Today was the CF Climb for Life here in Dallas, in which we climbed the stairs of the Bank of America tower and raised donations to benefit CFF. There I met up with the leader of our team, Beth, whose son, John Goldberg, died one year ago today, she showed up along with her family to support her and our team, which was called, appropriately: For the Love of John.

It was also a family affair for me. Holly was there, determined to climb, along with her husband, John, and their nine-year-old daughter Murren. Holly decided that she wanted to try to climb the whole way - 70 stories. I was hoping to make it 23, which was the first official stop. She left with a big smile on her face, accompanied by Murren. John left later with those planning to go to the 42 floor, and I was last.

When I arrived, huffing and puffing, to the 23rd floor, I was taken, via elevator, to the 70th floor to await the others and join in the after-party. I met up with John and we both kept looking for Holly and Murren. Finally, another member of our "For the Love of John" team found me (It happened to be the sister of John for whom our team is named.) and told me that she had met up with Holly and Murren on the 64th floor. They were going to make it!

When I heard that, I elbowed my way (as politely as possible) to the front of the welcoming group, so I would be the first to see her. I didn't have to wait long before she came through the door, triumphant, but emotional to be The One to accomplish it. We fell on each other and cried together. She is truly amazing. None of us, including her, ever thought she could make it all the way, yet there she was.

That determination that God gave her is what has kept her going through some very tough times in her life and will stand her in good stead in the future. May I just say, she's my hero!

Thanks, John

Nearly 31 years ago, on December 13, 1979, Holly was hospitalized at Children's Medical Center in Dallas, where she had just been diagnosed. The staff there thought that we should go to CF Clinic there, since we'd be going regularly for the rest of her life. I didn't want to go and resisted mightily. I didn't think I was ready to walk into a room full of small children who were pale and wasted with oxygen masks covering their noses and mouths. The social worker had arranged for us to meet a mom and her son who had CF. She thought they would be helpful to us, especially since we attended the same church.

We were to go Thursday morning. However, I had no plans of going. I was resolute. I was not going with my beautiful seven-month-old daughter to a depressing place until I was forced.

I was forced. I was holding Holly when they came. As I argued, they gently took me by the arms, one on each side of me, and pushed/pulled me out the door of Holly's hospital room, all the way to the CF Clinic. When I got there, I sat off by myself, not wanting to speak to or even make eye contact with anyone. I did cast a few furtive glances about the room. Enough to see that there were only a couple of children on oxygen. The others were playing or sitting on their mothers' laps. That was somewhat of a relief -- not as bad as I'd thought it might be.

You have to understand: When Holly was diagnosed and I learned exactly what CF was, I cried until I could cry no more. I thought I would never smile, and certainly I would never laugh again. I was on the brink. I didn't think I could cope with anymore sadness. The sight of a dying child would push me over the edge.

We waited a little while, and then the door to the exam room behind us opened. Out walked this adorable, blond-haired little boy followed by his mother, who was sharing a laugh with Dr. Prestidge. I remember staring. He looked healthy. She was laughing. Was there cause for hope? Might I someday smile again? It was still too early to tell.

As I stared, I was introduced to Beth and little five-year-old John. I don't remember what we talked about, just that I was amazed and hopeful. Maybe, just maybe . . .

Beth and I became friends and babysat for one another. After all, who else knew how to get our kids to take their enzymes? I learned to hope and even smile again. Laughter took a bit longer. Even after moving from Dallas, we kept up. When we moved back to Texas from New Jersey, we lived in Temple, which was two and half hours from Dallas. However, we still took Holly to Clinic at Children's. Sometimes, we would spend the night with their family, because Clinic started bright and early at 8 a.m. Clinic is set up on a first-come, first-served basis. So the earlier you get there, the earlier you get out. Plus some days, Holly had fasting blood work ordered. That meant that the earlier we got there, the earlier she could eat!

Years later, I remember calling Beth's house to give them a personal invitation to Holly's wedding. John answered. We talked about his health, his activities and his plans for the future. He had dealt with some serious scares over the years but always managed to come through.

At some point in time, he and Holly renewed their friendship, and she kept me informed of what was going on in his life. We rejoiced with him and his wife, Jennifer, at the birth of their son, Jack. And prayed for new lungs as John's health deteriorated. We celebrated when we learned of his bilateral lung transplant in September of 2007, and were thrilled to hear his reports of breathing easily for the first time in years. Holly tried to imagine what it would be like to live without daily breathing treatments.

We kept John and Jennifer informed when Holly was diagnosed with a brain tumor and then underwent surgery to remove it in September 2008. Holly corresponded with him and Jennifer as she sat alone in Birmingham for five weeks undergoing radiation every day. They assured her of their prayers.

Then, he began to have problems. His body was rejecting his lungs. Eventually, he went into chronic rejection, and his only hope was another transplant. We looked anxiously for every email update and prayed fervently. It was a special thrill for me when John received his second pair of new lungs, as well as a new kidney, on my birthday this year.

This time, though, it seemed there were complications from the start. The doctors would resolve one issue just as another presented itself. It was one thing after another. Holly and I both cried when we learned that he had a fungal blood infection. We knew the implications, because Holly had had one when she was 17. She had barely survived, and she was healthy going into it. John's body was already compromised.

Less than a week later, we got the news that John had passed away. I sent a text message to Holly's husband and asked him to tell her, because I thought she needed to hear it in person. This was just too much to share in a phone call. We have never talked about it. It's just too much and too close. John's death brings up so many emotions for us both that we can't handle over the phone.

I went to the memorial service, and it was a wonderful tribute for an amazing, courageous man who had a zest for life in spite of all his trials and difficulties. Friends shared their memories of John and what a terrific impact he had on their lives. Sitting there, I realized that John influenced more people and packed more living in his 36 years than most people do in 80. Sad as I was for Beth, Jennifer, little Jack, Holly and myself, I was happy for John knowing that he is in the arms of his loving Savior for all eternity. He's breathing easily and probably dancing for joy. What a lovely thought.

So, this post is a thank you to Beth and to her remarkable son. Goodbye, John. See you later.

The Healthy Child

One of the primary challenges in a family, with a child who has a chronic illness and another who does not, is how to make sure the healthy child gets enough of the right kind of attention. It's so easy to focus on the child who requires a daily, time-consuming regimen and so easy to take the healthy child for granted. At one point, Vanessa, who does not have CF, expressed to her aunt (my sister) that she didn't think we loved her as much as Holly, because we didn't spend as much time with her. She was too young to understand that most of the time we spent keeping up with Holly's regimen was not fun time -- not for Holly and not for us.

I decided to do a reality check to see if we really were neglecting Vanessa in terms of the amount of attention we were giving her. My sister reassured me that from her observation it was not reality. However, I realized that what was important was Vanessa's perception, and we needed to make some changes to reassure her that we loved her just as much as Holly.

So, we decided to spend more one-on-one time with her, playing her favorite games, reading her favorite books. Personally, I also made sure that during my time with her, I was really connecting -- looking her in the eyes -- making sure she knew she had my undivided attention.

When Holly was hospitalized, we faced different challenges. As much as possible, we tried to keep the family together. Naturally, Holly avoided hospital food as much as possible, so I would bring their favorite casseroles, pizza or hamburgers to her room. We would all eat together, then, if homework was complete, we would watch a movie together until bedtime. Occasionally, my husband, my sister or I would take Vanessa by herself out for dinner and a movie while the other stayed with Holly. The balance was always precarious. Because we didn't want to swing too far in the other direction so that Holly would become jealous of the time spent with Vanessa outside the hospital.

Another challenge centered around food. When Holly was growing up, the CF Foundation had a program called 100 Percent Plus. It focused on ensuring that the children with CF got 100% of the nutrition that they needed, plus as many extra calories as possible in any form we could provide them. They recommended things like soda and candy bars, because they provided a lot of dense calories. In other words, Holly didn't have to eat a lot to get a lot of calories.

Well, try explaining to a six-year old why her sister can have two or three candy bars a day, as well as an equal number of sodas, and she can't. I pointed out to Vanessa that Holly needed to eat those things to stay healthy but that those same things were not good for her. Yeah, right. She didn't get it. Favoritism again, or so it seemed to her. So we compromised. Vanessa could have half a candy bar and one small glass of soda. That seemed to satisfy, not only her sweet tooth, but her desire to be treated the same as her sister.

It always seemed to be a tight wire, because Holly would see the unfairness in the fact that she had to spend between 45 minutes and 1 1/2 hours a day plugged into a nebulizer and getting CPT (We called it pounding.), while Vanessa was free to play. That required explanations that because of that time spent doing treatments, she could then be healthy enough to play. Naturally, that resulted in protestations of, "It's not fair!" My only response to that was, "You're right. It's not fair, and I hate that it's this way. But it is, so let's try to make the best of it." That seemed to help, though some time of pouting usually followed.

I finally realized that I had to make sure I treated each of the girls as individuals, meeting their own unique needs and hearing their thoughts and feelings about their lives. We did the best we could to be fair, and then I had to just let it go. Total fairness in this type of situation is impossible, and each child is, at one time or another, going to believe that they're getting the short end of the stick. It was up to me to make sure each child knew beyond a shadow of a doubt that she was loved. And, at the end of the day, that was the most I could do. I learned a lot about love and about loving each girl in the way she needed to be loved, because they each perceived it in different ways. They still do. So in teaching them, I learned valuable lessons that I hope I never forget. My children, and now my grandchildren, are still my best teachers!

Holly Shares

I thought I'd take some time to share, from my perspective, a few things that I thought might be helpful.

First, I am very compliant with my therapies (my regimen was written about in an earlier blog), but was not always. As I've told many parents, what made the difference was a change in perspective from feeling (despite my parents' urgings to the contrary) that I was a slave to the CF master to realizing that the various therapies served my purposes. I loved swimming throughout my school years and college and realized that I swam better after a treatment. I lived in a dorm with a community bathroom and realized that I didn't have to be embarrassed when I was faithful with my enzymes. And now, as the mother of a 7-year-old basketball player, I can cheer louder and enjoy the concessions at games, when I've done what it takes. Looking back it seems that I really became compliant when I went away to school (contrary to popular wisdom) because of my pride. I had a lot invested in showing my parents that I could make my own decisions and to me that meant my decisions would not be the ones they would have made for me. But, when they weren't there to see it, I guess I felt I wouldn't be losing anything. Then I became convinced of the good it was doing me toward my goals and I kept it up even after I came home. So, I guess the nugget of wisdom I'd want you to gain from me is that it's okay to nag, because you're going to anyway - you love us, you can't help it, even now, my daughter gets onto me if I'm not getting to things fast enough for her - and to encourage strongly the participation in anything your child is passionate about, because at some point that will become it's own motivation and consequence which will be much more powerful to your child than your emotional distress. (And resist any temptation to mitigate the natural consequences!)


Second, I cannot strongly enough impress upon you the need to encourage and assist your child(ren) in dreaming big. Reality has little to do with dreaming. Little boys everywhere dream of being astronauts and little girls of being princesses and not because there's any real chance of that happening. Encourage them to dream of universities and scholarships and marriage and children, all the things you'd encourage any other child to dream of. Then, do everything within your power to help them find ways to realize those dreams - get creative. I have much of what I dreamt of, but little of it came in the conventional way and this is true for most of my adult friends with CF. I don't know of any circumstance in which your child would need you to tell him that his dream is out of reach. If it truly is, he will discover it on his own. If you think he's giving up too easily, push a little or find someone he will listen to that can push a little. Don't give in without a fight. This point goes hand-in-hand with the previous point, because if there are no goals to be attained there is no reason to be compliant. Treatments and therapies for their own sake are worthless.
I will give an example from my own life. I started out wanting to be a doctor. Nobody told me I couldn't be or shouldn't be, but somewhere around age 15 I realized that the only kind of doctor I wanted to be was a CF doc and that it would be very emotional for me. I wasn't sure I could handle all of it without taking it personally. I also realized that I really wanted a family and I wasn't sure I was prepared to make the kind of sacrifices it would take to have a family and be a really good doctor; I didn't want to give anybody less than my all. So, I started thinking about other careers. At this point, my health was really poor and I was out of school and in the hospital a lot. I was out so much, in fact, that I was in danger of being failed (my school district was not in compliance with Americans with Disabilities Act at that time, but we weren't in a position to challenge it). Instead of my parents despairing and concluding that all these dreams were foolishness, they looked for a way to make it work out. That way came in taking my GED. Then I started taking a few classes at the local community college, majoring in music education with a focus on violin, which I'd studied for years. I could tailor my load to what I could handle and they were much more flexible. After a few semesters, I was able to get a scholarship to a state university only 3 hours away and near the clinic that had diagnosed me. We worked with the Office of Disabilities to get a few accommodations to give me the best chance at success. One was lowering the amount of credit hours required for full-time status and another was getting permission to turn in assignments or take tests late if I were sick or hospitalized at the time they were due. After two semesters, my health was too poor to return. After a year of floundering about thinking the future wasn't anything to look forward to, I met my husband and married him in short order (7 months).
Now that I was more hopeful about my future, I began reevaluating my goals. I still wanted to teach music, but I knew now that my body wasn't built for a 7-4 M-F schedule. That was a freeing realization, because that meant that I didn't need a degree to get into the classroom. I started by taking a few private students. Then, I began taking "teaching lessons" from a master teacher, who opened the door for me to work with a Conservatory. Soon I was teaching a full studio of private students as well as group lessons and ensembles. I also got involved performing with the local orchestra.
It was rather a round-about route to success and it took some real and discouraging setbacks. But, it ended up much better because the kind of work I got allowed me freedom to rearrange my schedule and to take on more or fewer responsibilities as needed. Then when I became pregnant and had an infant, I had the flexibility I needed to care for her in the way I wanted to and continue to work some as well. there are more examples, but that serves to illustrate my point that my dream was in fact attainable, even though it took some unconventional means.

"Here endeth the lesson"
- Sean Connery The Untouchables