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.
Tuesday, November 2, 2010
Thanks, John
Cystic Fibrosis, living with chronic illness
Chronic illness,
Cystic Fibrosis adult,
Dealing with death
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