I'm Glad I Didn't Know

"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 said "goodbye" to her on November 8th, I repeated over and over to her, "Your life mattered". Because MGH and Brigham and Women's both rejected her and declined to save her life. They made her feel like she was unworthy of living; that her life was disposable. So I told her emphatically that her life did matter. To me and to many, many others. 

I also made many promises to Courtney that day, most of which will stay between Courtney and me. But, two things I promised her were: 

I will make sure that you are remembered forever - and - I will continue to be your voice, I will tell your story. Loudly.

So my plan is to start at "the end" and work my way backward. Because "the end" was horrific. We all know how this story ends. There's no happy ending here. So it's not like I have to warn anyone of "spoilers ahead". And I want to get writing about "the end" over with as soon as I can. I will be dealing with the trauma of "the end" for the rest of my life because it was the stuff of all of my nightmares. And then the nightmare came true. Except that it was much worse than any nightmare I ever had. It was much, much, much worse. 

Courtney was direct, honest, blunt and a straight shooter and so will I with this blog. I will be brutally honest and it may be uncomfortable for people to read but I don't care. Don't read it. I would understand. But, part of my mission in being Courtney's voice is to pay it forward, to help others on the same or similar journey. I will not hold back, sugar coat anything, minimize or spare everyone the gory, painful, (sometimes) intimate and personal details. And I want to use this forum to help me through this grieving and healing process. So I'm being selfish, too. But I think I'm entitled. 

I've been a coward. I didn't want to write about how Courtney died. I wasn't ready. But I can already see happening what always happens with tragedies like this. People are moving on because, sadly, life always gives us another tragedy to replace the old one. And grief and suffering are uncomfortable for some. So they move away from it. It is uncomfortable, I don't blame these people. And some people have told me (innocently) that they have to mentally prepare themselves before they read my posts and some have mentioned how heart wrenching and traumatizing they are to read. Everyone has a right to not take on my pain. I totally get that. But I promised Courtney that I would make sure everyone remembered her. So at least this way, everyone can decide when (or if) they want to open the blog link. But I will not let Courtney down by becoming silent. I made a promise. 

I'll give you a little preview of "the end" which is the last (and greatest gift...besides Carson, of course) that Courtney ever gave me. I went into her hospital room last to say "goodbye". I demanded to be last. I deserved to be last. Courtney would have wanted me to be last. I had many, many things I wanted to talk to her about. Courtney was heavily sedated at that point because she was being made "comfortable" as happens at "the end". She was on dilaudid and versid and was not asleep totally but was mostly non-responsive. I held her hand and I cried. I cried all the tears that I had refused to cry in front of her for two months. I sobbed and talked to her through my tears. I'll share some of this conversation through these blogs over time. But, at some point during my monologue with her, I said out of sheer agony and desperation, "Courtney, I hope to god you can hear me!". And then, her beautiful blue eyes flew open for an instant and with a huge amount of exertion (I could see it), she nodded at the same time. And then she was gone again. I have learned since then that hearing is the last thing to go before you die. Somehow, Courtney found the strength to let me know that she was there. That my words had an impact. That she heard me. That she was with me still. She gave me a gift. The gift that maybe, just maybe, my words gave her the comfort that I so badly wanted to give her in her final hours. That was My Courtney. Selfless and loving - to the very end. My CF Warrior. My niece. My best friend. My daughter. My everything.  

"When you cried, I'd wipe away all of your tears;
When you'd scream, I'd fight away all of your fears;
And I held your hand through all of these years;
But you still have all of me" ~ Evanescence, "My Immortal"