Listening

As adults, we like schedules. We get up at the same time every day, eat at the same time, go to work or school at the same time, and we expect our children to live on our schedules. And, to a certain extent, that's reasonable and necessary.

However, when it comes to talking and sharing about what's on their hearts and minds, kids, whether or not they have CF, work on their own timetables, and, frequently they don't jibe with ours. Just about the time we're settling down to crawl into bed, they decide to open up. Though it's tempting to put them off until toothpicks aren't a necessary accoutrement to keep our eyes open, with kids, we have to listen when they're ready to talk. If we don't seize those opportunities, we lose them. They cannot and will not be vulnerable on our timetables.

Holly and I had a lot of 2 a.m. chat sessions sitting on her bed, sometimes high in the air in her loft. These were rare and precious times when she granted me access into her very private world of hopes, dreams and fears. These were the times she voiced the concerns that I had no idea she carried.

When we're entrusted with the gift of our children's open hearts, we must tread carefully. We must take their thoughts, feelings and fears seriously. At times, that means we sit quietly as we let it all sink in and weigh our answers thoughtfully and carefully. It's critical that our children know, without a doubt, that they have been heard and are being taken seriously.

Sometimes the feelings and thoughts they express will surprise or shock or even hurt us. I remember biting the inside of my cheek to keep from bursting into tears when, as a young teenager, Holly shared that she thought she probably shouldn't consider becoming a mother when she grew up. A friend of ours had recently died, and his death affected her deeply. She also observed and felt keenly the pain his high school and college-age children experienced. Holly said that, knowing she might not live to share the experiences of graduation, marriage and the birth of her children's children, she didn't think it was fair to them to bring them into the world only to "abandon" them too soon. As I bit my cheek and blinked back tears, I prayed for wisdom of how to answer this honest, realistic question. Finally, I told her that I believed with every fiber of my being that she was such a precious gift to those she touched that any child would be privileged to call her mom for as long as they had her, and that she should not deprive them of that. I explained that whatever time she shared with them, she would leave her imprint on them, and they would be better for it. Thank God for His insight on that one.

As it has turned out, she is now 33 and has a 10-year-old daughter who adores her mama, and her mama adores her right back. How deprived they both would have been had she chosen not to have a child.

There were many other discussions. Some were not quite so heavy and future-focused. There were the typical teenage angst talks, as well as those that dealt primarily with CF.

The point is that, as parents, we must be prepared, and we must be focused on the needs of our children ahead of our own needs for sleep. Along my journey as a parent, I have been fortunate to learn from people wiser and more experienced than myself. They have passed on valuable tips on communication with children that are especially appropriate during those intense times of sharing. These tips help us let our children know they have our attention and are our priority at that moment. It's not just important that we give our attention, they must know and believe they have our attention. How do we prove that?

1. Look them in the eye, and when they look back, don't look away, especially when they are the ones doing the talking.
2. Don't interrupt! Hear them out, even if you disagree with what they're saying.
3. Don't discount their thoughts and feelings. They're real and important to them, no matter how they may seem to us.
4. Do ask questions to show your interest and to get clarification.
5. Do take time to consider what they've said to show that you value and give importance to the information.
6. If you don't have the answers, be brave and honest enough to tell them. Or say, "I need some time to think about that. I don't have an answer right now. I'll get back to you." Then do it. Do NOT let it drop. They'll respect your honesty whether you have an answer or not. Believe it or not, they figure out sooner than we think that we don't have all the answers. They just choose to love us anyway.
7. Tell the truth, even it it's tough to say and tough for them to hear. They'll spot a lie before it gets past your lips. Children are intuitive creatures. They know us much better than we realize, and they will catch us in a lie, even if we think it's for their benefit. Once we've lied, we've lost their trust and may never get it back. (That's a topic for another post.) Just tell them what they need to know, taking their age and level of understanding into consideration.

Give your child(ren) the time and attention they need, when they need it, you'll not regret it. You'll catch up on your sleep, but you can never get back the opportunity to connect with your children if you miss it.

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.

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.