As moms of kids with a chronic and terminal illness, we are desperate to do everything we within our power to keep our kiddos healthy, no matter their age. Most of us study, question, work and use all of our intellect, creativity and energy to give our kids the best life possible.
Sometimes, I think it's worthwhile to take a moment to consider exactly what constitutes the "best life." Does it mean the longest life? The fullest life? Some combination of the two? Naturally, as parents who love our children with every fiber of our being, we long for them to have a normal life expectancy. We yearn to trade places with them -- to take their suffering as our own. We, especially, hope and pray that they outlive us.
When my daughter was diagnosed at seven months of age, she was hospitalized. The CF specialist, Dr. Claude Prestidge of Children's Medical Center in Dallas, one of the best CF centers in the country, perhaps the world, stopped by to see us at seven in the morning. I was still in my robe and did not yet have my emotional walls up for the day. He walked in, looked me in the eye, put his arm around my shoulder and said, "Hi, Caren, I'm Dr. Prestidge. I understand that Holly's been diagnosed with cystic fibrosis, and I'm so sorry." I turned toward him, buried my face in his shoulder and cried.
He examined by baby girl and promised me he would be back that night after he finished his day. He arrived 12 hours after he'd been in our room that morning, plopped his lanky frame on the floor, leaned back against the wall and pronounced that this was our opportunity to ask any questions we wanted and he would not leave until we were finished. We asked everything we could think of at that point in our new-diagnosis ignorance.
During that marathon session, Dr. Prestidge shared so much information that our heads swam. He had warned us that it would take a long time for it all to sink in and make sense. But there were two bits of information that I never forgot and that I've come back to throughout Holly's 35 years.
One was that he was going to discuss life expectancy with us once. We had asked, and he would answer us now and never again, because it's so very individual. I thought, at that time, that he was just trying to give us hope beyond the 18 years that were the average at that time. However, time and experience has taught me the truth of his statement.
The second, and this became our guide in the choices we made and helped her make as she grew, was that first and foremost, Holly was a normal child. She just happened to have cystic fibrosis. Dr. Prestidge urged us to treat her as a normal child. He predicted, accurately it turned out, that there would be occasions in which we'd be forced to choose what might make a difference in her quantity and quality of years. He pled with us to always choose quality. He said, "I would rather see Holly live 18 fun, wonder-filled, happy years than 21sheltered years." Understandably, my heart ached that I would be forced to choose. However, this was the life we had. This would be the life that would be hers.
I wanted her live -- really live. I wanted her to taste everything she wanted in whatever time she would have on this earth. She should experience all the good things God had for her without my standing in her way overprotecting her out of fear.
So, she grew up as normally as possible. Yes, she had to take handfuls of pills with every meal, and she did treatments every day, but other than that, and, of course, hospitalizations and home IVs, she lived normally. We had a pool, and she and her sister lived in our backyard during the summers. From our trampoline to the pool and back again. They loved to play "Little House on the Prairie" or "Orphans," in which they dug in the dirt to make beds for themselves, since, in their imaginary world, they were too poor to have real beds. When they got thirsty, they turned on the hose and drank from it, and she didn't catch anything.
We visited grandparents most summers and stayed at their cabin on a lake in northern Illinois. She, her sister and her cousins swam in the lake and we all enjoyed wiener roasts together. She became a great water skier and looked forward to every opportunity to be in the boat, going skiing or tubing.
We went to Colorado and she learned to snow ski. Of course, before long, my daredevil daughter was zipping down the Black Diamond slopes. She'd come into the lodge covered with snow, cheeks bright red, teeth chattering from cold and a huge grin on her face. She was living and loving it!
She went to two different camps especially for kids with CF. They sat at long tables with bowls of the various types of enzymes set out across the tables. Each kid grabbed what they needed before they ate their camp food with their CF buddies. The kids did treatments together in one big room, mist from the aerosols filling their air along with the sound of "pounding" as the therapists performed manual CPT on each kid. And they coughed and coughed all in one room and then breathed in that air. And Holly didn't catch anything.
And she made friends. She enjoyed the times when she wasn't the only one doing treatments and taking pills. Holly had one special friend who had CF named Kathy. They spent the night at one another's houses, though usually at Kathy's, because she had a G-tube for night feedings, and Holly didn't. The slept in the same bed and played with the same toys and, just in general, had fun together. Being normal. And Holly didn't catch anything.
We went to Schlitterbahn, a giant, wonderful water park in Texas and went on nearly every ride, even the one that took us right out into the river. She went on overnight school trips and sleepovers with friends who didn't have CF, which, sometimes, meant she missed treatments for a few days. We chose quality.
She lived as "normal" a life as she possibly could. She took pills, she did treatments, she did home IVs, she had sinus surgeries and lung infections that landed her in the hospital. Once, she came close to death when she contracted a fungal blood infection.
Now, at 35, she looks back with fondness at her childhood. There was no way around the fact that she was "different" in some ways, but we tried to make sure that it was in as few ways as possible.
I know that different gene mutations contribute to good health or the lack thereof. We worked hard to be consistent with her treatments and make sure she was compliant to the best of our ability. We never took CF lightly, but we tried to ensure she lived a good, full, "normal" kid's life. To the best of our ability, we did that, and her life was enriched because of it. Allowing her to be exposed to germs did not shorten her life.
I know there are parents who do everything "right," and their kids don't stay healthy as long as Holly. But, even if Holly had not made it to 35, I would not regret having allowed her to be normal. She was happy. She never saw herself as a "sick kid," and she got into more than one fight with kids at school who told her she was sick.
Every parent has to do what's right for their own kids, and I respect that. I had to be able to put my head on the pillow every night and know that I'd done everything in my power to give both my kids the best life possible, before I could relax and go to sleep. But I'm an advocate for our kids. They have way too much to deal with -- much more than any child should have to -- but I believe we should allow them to, as much as possible, just be normal, carefree kids. While they have the opportunity, I want them to live. Just live. When you have to choose, choose quality. Neither you nor your child will regret it.
