Those were the words that came from my Aunt Nancy in an e-mail. I think I heard an audible laugh come from myself when I read those words.. They were written in a response to an update on Chloe's heart condition. What I thought but didn't write back, was that she was the precise person that came to my mind when I thought of the one person I knew that probably did understand what I was going through. And, that my greatest fear was that I would be her, living the life that she has lived but with the inability to live it as gracefully.
I like to think that it was my age and not insensitivity that caused my lack of understanding of the severity of the situation. It never crossed my mind that Christmas was probably much different for her and I wonder now, if she wondered, (still wonders) if every Christmas she enjoys with her son would be the last. Maybe she just never allowed herself to have those thoughts. I'm not sure..
Before I explain myself, I feel the need to express that I am looking at things through an altered lens. My details may be off.. It's information that has been told to me here and there in pieces. None the less, they are the pieces that form the picture in my head. I am the youngest of 15 grandchildren. Ten on my mother's side and five on my dads. The older I get, the more I realize what a different picture that I see as opposed to the picture that my older cousins see. They remember things more clearly than I. They see a younger version of everything.. My cousins disease was old news by the time I was old enough to understand that something wasn't quite right. And honestly, they made it look like it was easy, like it wasn't a big deal.. But as I've faced things with my own children, I've asked more questions, and with every answer, I'm always amazed.
During the two week wait that we had to find out what was going on with Chloe, I thought about them a lot. I thought about the wait that my Aunt Nancy must have endured many years before and of the devastation that she must have experienced when she found out the results and I selfishly thank God that I don't know that devastation first hand because our results turned out much differently.
When my cousin Tony was three months old, he was diagnosed with Cystic Fibrosis. The prognosis was grim. In the beginning, they said that he wouldn't live past six. When he made it past six, they said twelve. I think they eventually stopped giving him a time line and just kept hoping against hopes that he would keep outliving the odds. My aunt and uncle were determined that he would live the most normal life possible. My mother recently told me a story... Tony was a very small child and weak from the disease. But, still, he wanted to play football. My mother said that she was sitting next to my Aunt Nancy at one of Tony's football games, when a much larger kid hit him hard (at least hard in a mothers eyes). My Aunt Nancy scared out of her mind stood up and said, "no, he can't do this. He's too small". My Uncle Gene took her by the hand and sternly told her to sit down, explaining that he COULD do it. And so, she sat there quietly and still. With big tears rolling down her cheeks. I remember them joking about it being time for my uncle to "beat" Tony. I didn't realize then that it was a mode of survival. My uncle had to lay him on his stomach on a regular basis to beat him on the back to loosen the mucus so that he could breath. There were many hospital stays and many medications. They pushed him to eat when he didn't want to because he felt so bad. He trained his lungs so that he could hold his breath the amount of time it took him to swim their swimming pool two and a half times. I walked beside him at a cystic fibrosis walk-a-thon when I was a teenager. I had a hard time keeping up (did I mention I ran track in college?) He beat the odds, all of them. He graduated high school with honors, got a great job, married a wonderful woman that handles his disease like God made her for that, and adopted a beautiful little boy.
As in true character of the disease, Tony's condition has continued to worsen. His hospital stays have become longer and the complications have been greater. He eventually got bad enough to be put on a list for a lung transplant. The condition has to be extremely severe for a person to even be considered for a transplant, for the benefits of the transplant to outweigh the risks of the surgery. That has been a painful process as well. First the decision to have the transplant and then, the wait, and many false calls. When I was visiting my family in Alabama a month or so ago, they had one of those false runs. Tony was number two on the list. The person in front of him needed both lungs and a heart. If the heart wasn't good, Tony would get the lungs so with every donor that came in, they prepped Tony too. Just in case. The false runs were no surprise. They had been warned to expect them. But the surprise came in Tony's reaction to the false runs. I guess it wasn't that much of a surprise to those of us that know him. But there is no doubt in my mind that the nurses who provided his care have seen Jesus. I talked to my uncle after one of those false runs. After they had prepped Tony for surgery, shaving him from chin to toes, on the way back to his room to wait for the verdict, Tony stopped to pray, not for himself. But, for the guy that was number one on the list and for the family of the donor. I'm sure I no longer need to explain to you what a sweet, unselfish soul that lies behind those weak lungs. And I can't begin to explain to you the faith that I have seen their whole family exhibit through the whole ordeal(mom, dad, and sisters too), always thanking God and trusting him while waiting for his perfect timing. They have been through so much. In the middle of all the false runs, my aunt fell while she was at the hospital and broke her shoulder in four places. There have been many more hiccups along the way and still, through all the trials they've faced, they haven't taken their eyes off God. And I have no doubt that lives have been changed because of their influence.
I can think of very few other things that I could be more excited about saying more than: It looks like his perfect time has come. This afternoon, they got another call. With great hopes and guarded hearts, they headed for the hospital one more time. He was prepped once more and waited once more to find out that this time, the lungs are good. As I write this, Tony is a few hours into an eight to ten hour surgery. I don't know how many years it's been since he's breathed a breath without being in pain. But, I know one thing for sure. He will never take for granted an every day blessing that most of us never think twice about.
He still has a long road to recovery ahead of him and our family does covet your prayers tremendously. I will update as soon as we get more news.
And just one more thing.. If you aren't an organ donor, please search your heart and please remember that donated organs are always used to save someone's child.
EDIT: 4:30 a.m. 7/22/09-- The lungs are in and working great. Tony's wife reports already able to see a difference in his color and breathing. Thank you all for your continued prayers!
Update: 12:07 p.m. 7/22/09. Tony has been removed from the ventilator and is breathing on his own! What a blessing! Please continue for his body to accept the transplant.