One thing I’ve realized in this journey is that sometimes your story changes. I have fifty unpublished blogs that for some reason or another I didn’t feel like sharing. When I go back usually it’s due to the fact that I’ve written them while angry, or tired, or just done. That’s what happened the other night, I was angry. I got a phone call from our friend Ed. I’ve known Ed since I was maybe fourteen. He’s the father of my friend Channon. In the past three years our relationship has grown from father of my friend to fatherly. Lately, say he maybe one of the very few people I know totally understands exactly what I am going through.
When his daughter Channon was in high school she was diagnosed with Cancer. She spent nearly a year at Mott Children’s Hospital, and won the battle against cancer. She won that battle with her mother Leann and father Ed at her side. Because of the experience at Mott, Ed and Leann started the Michigan from the heart, the group responsible for bringing student athletes up to Mott to see our sick children. For those of you who have followed our journey, you know just how important these athletes have been to Will & Faith. They consider Patrick, Jordan, Morgan, and April some of their closest friends. And the feeling seems pretty mutual. They turned their tragedy of their daughters cancer into something that continues to help families battling similar struggles.
So, that phone call. I knew the moment I heard him say hello, that he didn’t have good news for me. Leann has been sick, she has needed a kidney transplant and has been struggling though dialysis. In a situation very similar to Faith’s you never really know if she will be feeling good enough, or have enough energy to do what the days present you with. So I figured it was a call saying she was having a rough time, or that she was headed back in to the hospital. The conversation that followed left me struggling to catch my breath. Leann was going to die. She had cancer that had spread through her body, and there was nothing they could do.
My mind raced around that fact. I first thought of Faith, who had grown to ask for Leann every time we were admitted into the hospital. Then immediately I began to think of Channon, it has not been so long since I lost my dad, and I know how absolutely horrible it can be. And Ed. I remember a year ago I sat with Leann as she was in the hospital, and she told me how lucky she was to have Ed and that they were best friends, and that he always wanted her to be happy. And I can tell you that my friend Ed loves his wife, the kind of love that all of us want, the man thinks of her first, always. They know what they have, and they don’t take it for granted.
That is what turned into my unpublished blog. That night I sat down and started writing angry words of someone who just is sick of life not being fair. I remember a married couple from our community had a daughter who had open heart surgery the day Faith got her colostomy bag. They struggled with their daughters illness. They understood the value of life, and they didn’t take anything for granted. So months later when I heard at a very young age the dad was diagnosed with stage 3 cancer I was outraged…another case of life not being fair. They get it. They understand the lessons of life they have had their battles to bear, it made me crazy mad that they were about to battle and entirely different war. (he’s won the war, by the way) I believe you gain perspective from tragic events, you likely become a better person, but there seems to be a point where too much tragedy all in the same place seems so very unfair.
The next morning, I sat and considered the difference Leann has made in my life. I can tell you exactly what hospital room we were in, she came in and sat with me. I’m pretty sure Faith was with us, but I don’t remember her being there. The conversation we had would change how I handled my daughters illness. She would give me hope, and she would make me feel for the very first time in so long that I wasn’t alone. You see, she had been there. In that very same hospital with her very own daughter battling everyday for her daughters life and well being. We talked about how everyone tells you to go home and get some sleep, and how the comment actually makes you mad, because at no time would you consider leaving your child alone in a hospital room or with someone besides her mommy. We talked about how hurtful it was that the longer she was sick the more people seemed to lose interest in being there for you. We talked about being scared and lonely and feeling like you were crazy. We talked about how sometimes you didn’t like a nurse and really there was no reason you just didn’t like them. I could tell her anything and at not a single moment in that conversation did she try to make light of the mess we were in or try to look for a solution, she just told me she knew, and I knew she did.
She did teach me some very valuable lessons that I plan to pass down to other families at Mott on her behalf. I AM THE BOSS. There is not a doctor or nurse that knows my daughter as I do and I have to be the person who approves of her health care plan. Some times you have to break the rules. She told me that she used to buy super soakers for the kids on Channon’s floor and they would have water gun fights. One very horrible day at the hospital when Faith was at her absolute end I improvised and we used syringes. We squirted every doctor and nurse that walked in her room. As she giggled though it all I fought back tears because I was so skeptical that I’d ever hear her giggle again.
Leann has become my friend. And she’s my real friend. I can tell her anything. I can tell her how scared I am, that I won’t be strong enough to make it though all of this with Faith and she understands. It is so very hard to understand. She has been the mom who lays in bed at night worried about her daughter. Real worries, not the things most people worry about but what if this infection gets worse or what about that surgery we have to have. She gets me, when so many people try, but just can’t.
A big part of what I love so much about the Boullion’s is how the story ends. Yes, that seems so absolutely crazy as I am telling you that the story is ending with all of us losing the woman we all love so much.
Today we took Will & Faith to say goodbye. There were too many people around, so my goodbye would have to wait. As they headed in to see her I stopped to look at the pictures on her wall and her refrigerator. The biggest one was Channon in her pilot uniform with Ed. Channon fought cancer, won, and became a pilot. She’s strong, independent, giving, and happy. So all those sleepless nights Leann spent with her were worth it. They say not to let the tragedy of the past determine your future, but I disagree… I see how Channon is so full of life and I am inspired by the fact that Faith will someday be the same way. Leann did her job with Channon, she didn’t allow the cancer to define her, they fought and they won. Channon is a gift, especially to my daughter, and we have Ed and Leann to thank for her. She also subscribes to the theory of hospital rules are made to be broken, as more than once we’ve gotten many dirty looks as Channon & Faith race wheelchairs down the hallway.
The other pictures were of families and friends and many many children who obviously have been touched by Leann, Ed, and Channon. Hundreds of different faces. Some not with us any longer, some still here. And because of my first hand knowledge of the family and their work, the number of people who they’ve touched is more like thousands.
So my angry story of this not being fair, and that good people deserve better has changed. I look at that wall and consider the fact that their daughter had cancer. They used that experience to enrich the lives of thousands of children, because they decided rather then whine about life not being fair, they made the best of the situation they faced. I hate cancer, I hate that Leann won’t be here the next time Faith is in the hospital to hold my hand and to tell me she understands. But she lived too good of a life to think of her life as not being fair.
So when you think of Ed, don’t be sad for him, be happy that he had the kind of love all of us wish we had. That he married his best friend and it stayed that way. And Channon, has been the patient and understands how hard it is to be sick, and she has a mom who was there every night, and loved her more because of the battles they fought together. They will be sad, and they will miss her terribly, as many of us will, but have been blessed to have her beside them, and will for a long while be able to witness the legacy she will leave behind her.
When I told Faith that Leann was going to die, she became very quiet. She told me she was worried about Channon and how sad she was going to be. She asked if we would still see George (what she calls Ed for some reason). She was silent for a few minutes then said, “It seems the longer I go, the more really good people I know in Heaven” more wise words from my little Faith. We love you Leann, thank you for making our world a better world. Faith told me today, now instead of holding your hand while I’m in surgery, she’ll be in there with me….