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.”

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."

Pressure We Put on Our Kids

Recently I've begun to understand pressure that I've put on Holly without even realizing it. I think most of us moms are impressed with the courage with which our children face their many challenges. And, I don't know about anyone's kids but mine, but she rarely seems to complain.

Instead of encouraging her, my comments to her along those lines, as well as those of other people, have made her feel that that is what is expected of her. I think I've made her feel that I won't accept anything less than a brave face and an uncomplaining spirit. I've put unreasonable expectations on her, especially now that she's dealing with a second brain tumor in addition to CF.

Sometimes she hurts. Sometimes she's angry. Sometimes she's discouraged. Sometimes she's tired. Sometimes she needs a shoulder to cry on. Sometimes she needs to be left alone. And it's all OK.

I don't need her to be any different than what she is at any given time. I think it's imperative that we let our kids, even if they're adult kids, know that we're no less proud of them when they are in a bad mood than we are when they're in a good mood. They've been given major challenges that they deal with every day. Pills; treatments one, two, three, sometimes even four times a day. Their lives are scheduled around CF. It gets old even when life is "normal," and then come the lung infections, difficulties breathing, transplants, brain tumors.

When these unexpected situations hit, none of us knows what to think, how to feel, what to do. Yes, we absolutely need to be able to have our feelings about these situations and to express those feelings. But we also need to be aware that our children, small or grown, watch our reactions and take cues from us. If we fall apart, they know they have to be strong for us to keep us from getting even more upset. Or they learn hysterics are the right reaction. But if we're stoic and show no feelings, they think no feelings are allowed. And it doesn't help if, when they cry or get angry, we say, "Oh no, don't cry. It's going to be OK." Right then, it doesn't feel like it's going to be OK. We probably don't feel like everything's going to be OK. So why do we expect our kids to feel that? We say it because we are not comfortable with their pain, their fear or their anger. They're our children, after all. We love them more than life itself. We would gladly trade places with them. But our discomfort with their feelings tells them those feelings are not OK, so no matter how they feel, they pretend to be fine.

Sometime our kids need us to give them permission. As their parents, part of our job is to teach them what is and isn't appropriate. That includes teaching them to control their feelings. If they're angry with a friend, they can't just go punch the other kid. That makes dealing with feelings associated with CF  particularly tricky. We need to give them permission to have their feelings even if they're so-called negative feelings. If it sounds confusing and a bit impossible, well that's because it is confusing and, though it's not impossible, it sure isn't easy! We have to demonstrate our own appropriate feelings to them, and we have to let them know their own feelings are OK. We need to tell them we understand their anger, and we share their sadness, disappointment and fear. Our feelings regarding our children and their health will always be complicated and must be handled with thoughtful sensitivity.

Anger at God

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

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

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

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

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

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

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

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

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

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!