Chandra's Journal
December 28, 2005
A month ago today we were sitting in the PICU waiting room hanging on every update while Canon was in surgery. Today we were told that we can go home! Drew left today in the car (so loaded down with stuff we could barely see him to wave goodbye) because he wants to be home to pick us up in Amarillo. Canon, Creed, and I will fly out of Houston Friday afternoon and be home around 4:00. Yea! Right? I don’t know why I feel so weird about leaving Houston now. People ask me, “Aren’t you ready to get home?” Yes. But there is something very sentimental about this place now. This little apartment on 1 Hermann Museum Circle is where our family took a very dramatic turn. Creed rolled over for the first time here. Canon started walking here. We had Christmas all together here. We became truly excited about our family’s future… here.
How do I describe what I feel? I felt almost giddy leaving the hospital this morning. We took a picture with most of the transplant team, passed out muffins and pictures of the boys, and said our goodbyes with smiles on our faces. I mean, we understand how blessed we are that Canon’s recovery has been so perfect. Even Dr. Karpen today asked to borrow Canon to take him down the hall to show a family that has to have a transplant! We have a liver transplant poster child! I’ve read enough and talked to enough people who have been through transplant to know that the risk of rejection is highest immediately after the surgery. He has had no signs of rejection whatsoever. Praise God! Sometime in the course of the day, though (perhaps helping Drew pack up our life here), I began to slow down and feel sortof… lost. Tonight after the boys went to sleep and I had some quiet time to think (also known as a hot bath), I realized what I think is the answer. This mountain that we have just climbed has defined us for the last year. Really, most of my adult life has been defined by challenge after hardship after tragedy.
“Who are the Perkins?”
“Oh, you know, they’re that couple that lost their little girl when she was born premature.”
“Who are the Perkins?”
“You know, she’s the one who had to be on bed-rest for five months before their son was born.”
“Who are the Perkins?”
“They’re the ones with the little boy that has a fatal liver disease and they have to raise all this money for a liver transplant.”
Tonight it hit me that those answers are all in the past. For a year now I have been all day, every day entirely consumed with this issue. What’s wrong with Canon? What’s going to happen to Canon? How can we fix it? How long do we have to wait? Will he be okay after that? We have essentially been waiting for this one day for a year, and it came and went. Here I feel I just have to say PRAISE GOD that my biggest “concern” right now is how to get back to a normal life!!! I have been obsessed with all of it such that now, I don’t know what to think about. The question is “Who are the Perkins now?”
I see we have some choices in who we choose to become at this point.
We could go home and act like nothing happened. I mean, of course we’ll do medicines and appointments all the time, but we won’t really speak of it when we’re out and about. In an effort to be normal again, we could try to “forget” what we’ve been through and just move on. I’m sure that by doing so, people would talk about it less and less until it became really just a personal family thing and the group experience would essentially dry up and blow away.
Alternately, we could go home and whine about the stress of the whole experience and all the pressure of post-transplant care and all the anxiety that we have over all the horrible things that could go wrong in the future. In which case people would probably feel very sorry for us all the time and would not count on the Perkins family as one for fun and games because they would know how stressed out we always are, nor would they come to us for any sort of advice or friendship because they wouldn’t want to add to our anxiety.
No, those will not work. I’m confident that there are those sorts of people in the world who react in such ways to traumatic experiences. But neither one seems to suit us or our intentions.
So, who are we? At its core, it’s a question of identity. And for that, I have only one answer. 2 Corinthians 5:17 says “Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come!... (20) We are therefore Christ’s ambassadors, as though God were making his appeal through us.” That’s it! What should I think on? What is my purpose now? There’s my answer. We have been given a miracle; we are the proud new owners of a genuine miracle story that unfolded in front of everybody! We can’t act like it never happened! If we did that, what appeal would we have for people to turn to God? At the same time, we can’t bemoan our human experience, searching always for sympathy and expecting everyone’s pity. What glory does that give to God?
Most of the time, I write without considering the number of people who might be reading this. And now, I have to admit, I’m a little bit nervous about publishing this one. Because I am making myself accountable to what God wants me to do with this experience. It is entirely likely that there will be times I will fall into one of the identities that I don’t want. I’m quite sure there will be times that Canon will get sick and I will be so frightened that his liver will begin to fail. But I don’t want to live in that state perpetually. So, I’m asking anyone reading this to keep me accountable to being an ambassador for Christ through this. If my words or actions do not reflect absolute trust in Him or do not give glory to Him for what we have already been delivered from, call me on it.
I don’t really know what it will look like to be a Christian ambassador; ashamedly, I can’t say I’ve ever been one before. But there’s a reason God gave me this story. It has all the makings of an Oprah Book Club novel (Maybe that’s what I’m supposed to do – write it all down. Even though with two babies I barely have time to read the directions on a box of Hamburger Helper, much less write a novel!), complete with a heartbreaking past, a beautiful child (if I do say so myself) facing a deadly disease, a still new but already tested marriage, seemingly impossible financial odds, a group of faithful friends organizing a grass-roots fundraising campaign, an incredible website that touched family, friends, and “strangers” all over the world and became the tool for God’s plan, a family still in the shadows who experienced the worst kind of loss and found it in their heart to give the ultimate gift of life, and thousands of lives changed for their separate roles in the miracle. Truly this story does not belong only to me or my family. It belongs to you, too. Whether you or your children said a prayer for Canon, you bought lemonade in Amarillo, collected cans in Abilene, bought a green bracelet in Austin, bowled in Midland, donated or rode in Tour de Canon in Lubbock, visited us in Houston, or in any other way participated in this mission (there are truly SO MANY ways people have contributed, I don’t even know if I could list all of them), or if you have just been keeping up with the website guestbook out of curiousity. The thing is, we all went through this together. When we flew to Houston after that third call at midnight on the morning of November 28th, I knew that I was taking 10,000 people with us. When the donor family left messages on Canon’s guestbook, I read them at the same time you did, and cried the same tears of amazement that you did. THIS IS YOUR MIRACLE, TOO! I’ve shared my fears, my joys, my family with you. And now, this is me, sharing my miracle with you. Take ownership of this story and help me be an ambassador. There’s a reason you were involved; there’s a reason God reached down and touched you, too.
I will continue to keep you close to Canon through the website. Because the fundraising support has been so overwhelming and we have reached our two-year goal and then some, I considered whether we should discontinue the website. But, for several reasons, I can’t imagine not having it now! I mean, we received Christmas cards from people that I only know from their messages on the guestbook, but they are family now! For those of you who have made Canon part of your family and part of your prayer life, I know you will want to stay informed of his status and keeping a journal is an easy way for me to do that. And selfishly, I am renewed daily by the messages of support and encouragement we receive on his guestbook. Drew and I constantly draw strength from them and I know we would feel so alone without them!
God bless you for every part you have played.
I’ll write you from Amarillo next time!
Chandra
Psalm 145:13-14
“The Lord is faithful to all his promises and loving toward all he has made. The Lord upholds all those who fall and lifts up all who are bowed down.”