Tuesday, November 2, 2010

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.

Thursday, July 15, 2010

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!

Saturday, January 23, 2010

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

Thursday, January 21, 2010

Guest Blogger

Hi, long lost friends! Forgive my long absence from posting. The freelance work I started in July has kept me busy, and I haven't kept up with my blogging as I'd hoped to.

Fortunately, my wonderful daughter Holly has offered to write a post or two. I think, as moms of children/adults with CF, you'll be most interested in her thoughts on things, which may range from ideas on giving your kids hope, motivation to do treatments (yes!), nutrition, and, in general, what it was like to grow up with CF.

She has my permission to share what we, as parents, did right and where we missed the mark. Holly is gracious to understand that we didn't have anyone who'd gone before us to give us the insight I hope she's able to give you. Enjoy, and please comment. We'd love to hear your thoughts.