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                                                              "Fly, fly, precious one; Your endless journey has begun; Take your gentle happiness; Far too beautiful for this; Cross over to the other shore; There is peace forevermore; But hold this memory bittersweet; Until we meet.   ~ "Fly" (Celine Dion) I told you I would start with the end first. And I've put it off long enough. But, as I think about this, I don't think the end can be fully understood until I tell the steps leading up to it. I'm hoping that writing about it all will release some of the horror of it for me. I doubt it. But I'll try anything at this point.  I thank you in advance for being willing to read this because there is no way you will be immune from taking on a piece of my pain as you hear the full s...

"And now I'm glad I didn't know; The way it all would end, the way it all would go; Our lives are better left to chance, I could have missed the pain; But I'd have had to miss the dance." ~ Garth Brooks, "The Dance" Courtney started this blog because, after years of keeping her cf journey to herself, she decided to open up and start sharing it with everyone. She didn't end up writing much on here but, what she did write, was poignant, direct and so well-written. Because Courtney and I were always a team, she invited me to write on here as well. So this became me and Courtney's blog. We are still a team and will be forever. So I will continue this blog to write ALL the many things I want to share about my beautiful Courtney, including her life, her hopes, her dreams, her wishes, her childhood, my memories and her fierce fight with the unforgiving disease that is cystic fibrosis.   When I sat by Courtney's bedside, held her hand and sai...

"Because I can count on my fingers how many sunsets I have left and I don't want to miss any of them." So, maybe I don't know exactly how many sunsets I have left, but I know there will never be as many as I wish there could be and that sunsets for me are not even sunsets, but the moments I have left with the people I love.  Being end stage in a disease, while working towards a way to hopefully prolong your life (a double lung transplant) is an incredibly taxing affair. Physically, emotionally and mentally. You're forced to look at ALL possibilities. Of course, you always hope for the absolute best outcome. One of the things you deal with is people always telling you in one way or another to "think positive only." Well, wouldn't it be nice if life was that easy. Sorry to break it to the vast majority, but, I'm a realist. Now I know when people say these things, it's usually coming from a place of love and encouragment...

"You make this look so easy" ~Auntie Janice I had dinner with my aunt a couple of months ago. She said to me, "I can't believe everything you are doing for Courtney. And you make it look so easy". I said, "Wow. I do? Because it's not easy. It's not easy at all."  She said, "I know it's not but you really make it look so easy". So life is a matter of perspective, right? What I am doing to save Courtney's life is easy...in comparison to what she is going through just to stay alive. But, I'm tired. Mentally, emotionally, physically. I'm anxious and terrified all the time about the near future as we finish up the pre-transplant testing and prepare for listing. I have nightmares almost every night. And they are not what you'd think. They are not nightmares about transplant or Courtney dying. But they are sometimes so intense that I have to will myself to wake up so my breathing can return to normal and my hear...

By: Lisa Lane McCarty “It is a fair, even-handed, noble adjustment of things, that while there is infection in disease and sorrow, there is nothing in the world so irresistibly contagious as laughter and good humour.”  ―  Charles Dickens,  A Christmas Carol Courtney and Carson at our family Christmas celebration (December 23, 2017)  My family loves the story  "A Christmas Carol" by Charles Dickens.   It was a tradition for us to watch the movie - the version with Alistair Sim because it's our favorite - around Christmas when I was growing up. Most of you know the story. And it's a good one. The ghosts of Christmas past, present and future visit Ebenezer Scrooge to help him find his humanity. The Ghost of Christmas Yet to Come was always the scariest, for many reasons. Physically, it was imposing and resembled the Grim Reaper. Mentally, it made you ponder the age old question of whether or not you would really want to know your future. The ...

"Courtney is My Mission" Courtney has generously allowed me to guest blog here. So many people over the years have suggested that I write about my life with Courtney - so here you go! And, be careful what you ask for . HA! Courtney said this is hard because it leaves you vulnerable which I already feel as I start this. I want to share it all or this would be a useless endeavor. I truly believe that nothing is worth doing if you can't be honest and authentic. And I always try to be my true and authentic self so...deep breath... let's do this.                                          I hate the saying, "Everything happens for a reason" . It's trite. And I hate trite. But it's also a lie. Because there is no reason - none - that a baby should be born with cystic fibrosis. No. That doesn't "happen for a reason". It's genetic, it's out of their control. And the circum...

By Tom Lane - now better known as Lisa Lane McCarty's father and Courtney Lane's grand-father My grand-daughter, Courtney , enjoyed herself at the camp I built on Aziscohos Lake in Western Maine . You can see she didn't want to leave - just as we do not want to see her leave us. She has a current support system, mostly in the form of my daughter, Lisa Lane McCarty - known to Courtney as Auntie Lisa - or Auntie Cisa (Lisa Lane as a little girl could not pronounce her "L"'s) . Courtney tells me she doesn't like Twitter, so to annoy her (seemingly my major purpose in life), I am posting this article, including the tweet. I do so to increase the number of people in her support system. And if she complains too much, I will not be preparing baked stuffed lobster for her for our pre-Christmas dinner. My grand-daughter, Courtney Lane's, first article as a cystic fibrosis patient and her battles with the disease and love/hate relationship with life. Wo...

  The Life of a Cystic Fibrosis Patient (The Princess and The Pauper)       In this blog, you can expect to follow me through my life experiences, both past and present. Stories of the many people that have impacted my life. Family, doctors, friends, nurses, and other patients. Near death experiences, of which there were many. Updates. Articles. There is a story here.  There are many, in fact, all leading up to the biggest story of all, my life.  I hope it helps or educates at least one person and if it can't be for anyone else? I hope that the one person it helps, is me.   For the majority of my life, I hid my disease, from everyone I could. I never looked sick, so therefore, I never needed to tell anyone that I was dying. What importance would it have? What difference would it make, other than people treating me like a charity case? I didn't want that. To me, I was strong, I was c...