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"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...

  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...