Sunday, October 21, 2012

at a loss for words

We are at a lost for words. We want to be able to share positive news. We want to be able to build on all the hope and optimism that has defined our relationship. We want to believe that James has many (many) more months, but in truth, James and I are not confident that he has more than weeks. We are no longer positive that James will qualify for re-transplant, or that he will be able to survive long enough for a donor to be found. We recognize the gravity of the situation. The risks may outweigh the benefits. It makes it harder and harder to maintain hope. We almost feel as though we are lying to ourselves. We can only pretend for so long without it becoming a form of denial. We have to be honest with ourselves, and of course, with our loved ones. 

James is not stable at less than 15% lung function. We believe that he is about 12% at 0.54 litres (FEV1). He is losing more and more lung function almost every other day. He sleeps most of the day, and has almost no appetite. He has to force himself to eat throughout the day with small bites and sips of fluids. The definition of exertion for James has come to include everything from talking to bending down. It is painful to watch Jamie struggle to breathe. 

There is a lot of grief and sadness. We both feel an overwhelming fear about the future. We try not to focus on it. We need to focus on living. We need to focus on everything that is within our control. We tell ourselves this over and over again. We try to stay within arm's reach of one another. We talk about everything and anything. We try to laugh and reminisce. We seek out friends and family to help us re-generate from the exhaustion. 

Our loved ones help to lift our spirits and find a sense of hope in all this darkness, but James and I are still at a loss for words. We want to be able to talk to each and everyone of you. We want to express love and gratitude. James wants to be able to say good-bye. This exceptionally hard. It means admitted out loud the realities of our situation. 

All that being said, it does not mean that James and I are giving up. James has all the courage and strength in the world. Everything may change in an instant, but I don't believe that James' drive to live will ever change. James has a love of life that pushes him to fight to be part of this world for as long as possible, and to have the best quality of life that his body will allow. Our lives are a reminder to those around us: There is nothing more than the moment. We can't take a single of those moments for granted. 

We love you all. As always, love, love, and more love.

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