It's not something we often talk about between the two of us. It's certainly not something that we usually feel comfortable discussing with even our closest friends and family. It's not even something that comes up in our recent conversations with Tricia's medical team.
But, the reality is, even with the transplant, Tricia is still very sick, and, without a miraculous, unforeseeable medical breakthrough, her life will not extend beyond a handful of years more.
Yes, we do know of transplant patients who have lived well past the 8 year average life-span post double lung transplant, and certainly, a second double lung transplant is, at least, a very narrow possibility. But, those cases are the exception, not the rule.
Reality for us is that Tricia weekly, sometimes daily, deals with an incredible array of physical issues, most of which we choose not to blog or talk publicly about. Relatively speaking (say, compared to a year ago today), Tricia is doing incredibly well, and we are beyond thankful for each day we've been given. The past few months of maintained health have given us more hope than ever that we might be able to enjoy "normal" for a while. She has truly not felt this good in years, and for us to complain about, or even discuss publicly these health issues would be exhausting, depressing, and would not be reflective of the joy and happiness that we sincerely live each day with.
But, the reality is that Tricia's body is and will forever be in a very frail state (those who live with a chronic illness and transplant can relate, I'm sure)...with every fever, every cough, every strange side-effect a bit of worry creeps in, quickly followed by a prayer to hope that it won't be anything major. And, although she is doing so well for Tricia (and much better than many other double TXers at one year out), her bouts with lymphoma, pneumonia and other illnesses this past year have slowed her progress and kept her from doing as well as we had originally hoped for coming out of transplant surgery.
Of course, to maintain a healthy relationship and a healthy grasp of things known as well as things hoped for, the reality of our situation is discussed between us at different levels from time to time...we are grateful that life and death and all the stuff in between is something we have been able to talk about freely since the beginning of our relationship. But, the truth is, it can be difficult to discuss these things with others who know and love us. To talk about it so seriously usually leads to a deep well of emotions, which makes it difficult to talk. To talk about is lightly just seems to lead to confusion and concern...
But, the reality is, we really only see a small piece of true reality. I cannot know what tomorrow may bring, and I am not guaranteed any more time on this earth than Tricia. We make our adventurous plans and dream big just like anyone else, but we also take advantage of every moment together and live for today, believing that God continues to hold our past, present and future in His incomparibly tight and gentle grip.
I never understood what carpe diem was really all about until recently. We have been given an incredible gift...a glimpse of what life could be like without the miracles...and we don't want to go back to the way things were before, taking so much of life, both the "good" and the "bad", for granted.
It is now 4:36am, and I've already been up with a grumpy 18 month old for an hour. My body tells me that I should be sleeping right now, and a few years ago I would have not been too happy about being up at this time of day. But my reality has changed, as has my perspective, and, although I will never perfect it, I am learning, albeit very, very slowly, to find the joy in each and every situation. I wouldn't trade a single, late-night hour with my grumpy daughter for anything...neither would I trade the reality of crawling back into bed with my sleeping wife in a few minutes.