I’ve never been one to say “life’s not fair,” or to be angry about Caitlin’s CF, or about her (not-inevitable) decline and need for a lung transplant. I’ve always tried to be philosophical and optimistic and I truly do believe that tough experiences ‘grow your soul’ and make you a more compassionate human being.
But.
Nick and I are in Florida, at a hotel with an atmosphere that feels more like our beloved Virgin Islands than “Florida.” The hotel plays soft reggae in the background. There are palm trees and thatched buildings and the water here is a Caribbean blue.
Being an only child, Caitlin tagged along on pretty much every trip we ever took–either by herself, or with Katie, or her boyfriend.
So I keep imagining her here–ambling in her slow way across the pool deck. I see her big sunglasses, her long hair, and I keep thinking I was a fool to have had one hundred percent faith that the transplant would happen, and that she would prevail.
I want to go back and cherish every minute even more than I did.
I keep thinking of her first days on ECMO and how the surgeon said, “We’re going to get you transplanted, Caitlin.” And, “I have a good feeling about this weekend.”
He was trying to be positive, and I’m sure he truly believed his own words.
I keep thinking of my own words, written in Cascade, where I describe a feeling that has always haunted me and which haunts me now:
There had been other such days—the long-ago morning her mother took sick, the afternoon the telegram spelled out the fact of her father’s first heart attack. At the ends of those days, Dez had looked back through the blur of hours to the innocent mornings, which started so normally. An egg, a piece of buttered toast, plans for this or that. And if those days had stayed normal, if the flu had passed through her mother’s body, through her brother’s, if her father’s heart had not seized, there would be no marveling at the day’s normalcy, no reeling from being blindsided.
No, normalcy is taken for granted until it’s gone.
–Maryanne
9 Lives Notes 
Hi my friend, just reading your post and they always touch me in a way I can’t find the words To describe. If I took one thing away from Caitlin’s words, your words and the words spoken at her service, I breathe deeply and try to suck in each day and all it brings, good or bad, don’t Take it for granted. Xxoo EI
Sent from my iPad
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I met someone this weekend who lost her stepson at 21 to drunk driving. They had been partying with him, and told him to stay at the house. He said he was fine and went to his friends’ house, where he continued to party. At some point, later that night, the friend and the son drove somewhere and both of them died. The layers of guilt and grief were unimaginable, obviously.
She told me that she didn’t think her husband would make it. The grief of losing his son in such a way was the most agonizing time of their lives–endless days of blackness and profound mourning. She thinks the only thing that saved him was a project in Florida.
Before the accident, they had found a place to buy as a vacation home near some friends. The friends were already hard at work on their house, and convinced them to come visit and check out the property. Slowly, slowly, they began to renovate the house. It took a long time, but the warmth of Florida, and the rehabilitation of the house, and seeing the world still spinning, (and many many tears), gave them a way to survive. That survival turned into living again, at some point.
I told her about you and your great loss. She told me to tell you that you can get through this if you surround yourself with people, cry often, and have a goal or a project–something physical–to create or reshape.
I think about and pray for you all daily.
Thanks, Erika. We’re managing… I even have a bit of a desire to get back to writing.. oxoxo
I’m so glad to hear it!
Oh Maryanne, that’s such a beautiful post. I remember being with my mother waiting for the phone call from the doctor about her tests. When the phone rang it was 2:22. And after she told me what the doctor said I remember thinking that I would never forget how before 2:22 everything had seemed so normal and that after it nothing would ever be the same. And it wasn’t. Sending all my love.xxx
❤
I’ve always thought it human nature, or perhaps just the nature of a mother’s love, to have total faith in these matters. ❤
I’m glad you’re continuing to write and share, Maryanne. I can only imagine the depth of your grief, but I know that in my own difficult moments writing sentences was the only thing that led me through darkness. I love Erika’s advice. Perhaps a book of writings like this could be a rope to hold on to? To allow you to walk, even if it’s in circles?
Thanks so much. I have thought of a book of sorts… xox
😇 ❤
I think of this often – how one moment in time is all it takes for everything to change forever. I don’t know why I think this way, but I do – every single day. For the most part, this thought process has informed how I live. It’s been an evolving thing, but I try to look at what truly is important and of value (especially since having children) and really cherish those things, that are mostly intangible. I’m not perfect, as a human being or a mom. There are moments when I react in a way I’m not proud of. I yell and get as overwhelmed as anyone. But I try to teach my kids about what really matters and how nothing lasts forever except love and your soul and memories (my son is really sensitive and seems to ‘get it’ more, plus he’s older).
I’m so glad to read your writing. That spot in Florida sounds magical. I’d love to be there right now instead of dark, gray MA.
Hugs.
(And for what it’s worth, at least to this outside observer, it doesn’t look like you could have cherished your moments with Caitlin any more.)
Thank you. xo
Maryanne,
I am reluctant to ask you this but I will anyhow.
A Co Worker ( Justin Hampton) has a young daughter with a very rare liver disease and requires a transplant. I think Caitlin’s and your experience could help but if it’s something you’re not ready for I completely understand. See below;
“ I Asked the Insurance Provider About Future Costs for the Liver Procedure. They could not give me any information until after it is Scheduled.
The Liver Transplant for Susan Might be in 1 year Might be up to 5 years , They can’t give Exact time frame for when her liver will go bad enough to need the Procedure.
I am Expecting to have to pay out of Pocket 20% for the Procedure. That’s pretty much What the Insurance Agent indicated at the End of my Interrogation.
Susan’s Medical Issue is : Neo Natal Sclerosing Cholengitis – Very Rare Condition .
They are trying to get her DNA Sent to a Specialist in England that dose Research of this Condition .
We are doing our Best to try to get ready for the unknown .
Many Thanks Again. . . . . “
Thanks
Bill
Hi… I’m so sorry for your friend and this child. Honestly, Caitlin, as an adult, handled all of her insurance approvals, etc. I never had anything to do with it. I do know that it’s important to appeal any negative decision. To fight any negative decision. Having to pay 20 percent is hefty. Is it possible to switch to a better plan now, before the procedure happens? Anything in-hospital was covered completely by our insurance..
Oh, Maryanne, I am glad you are still writing these. I think everyone who grieves knows that feeling of “Wishing I’d cherished the moments even more than I did.”
It doesn’t matter that you cherished your daughter as much as anyone ever has— in grief we want to go back and have those moments again—Some day down the road, memories will console rather than repeatedly shatter your heart
I do think one day all of this will be a book, and should be. And Caitlin’s writings will be in there, too. I send you light and love across these miles and hope the Florida sun will help you both.
I have read your latest post over and over as it all speaks to me in various ways. First, you talked a little about Caitlin and how she usually went everywhere with you and Nick. I have a brother but since he never liked my parents much, it was usually my mom, dad and I and we where truly like the three mouseketeers. It was special and remained that way until they died. Your little trio was and will always remain so very special to you and the memories will be with you always. After my mom died in 2011, I spent most of my time with my dad which was lovely. Many times, those times do not just seem like cherished memories but something I just did this morning. I feel so glad that I can think of those moments that way and not simply the distant past. There was a lot of love there and I think that is why I can do that. I do hope I am making sense to you. I know you miss Caitlin so much and this will always be but that shows you how much love there was and will always be. Many times, when I think of my dad, I cry, tears streaming down my checks but sometimes I feel happy that I had the most wonderful dad. You wrote that you keep thinking that you were a fool to believe in the transplant and that all would be fine. You know though, we all need hope and without it life would be bleak I think. Hope is what keeps us going at times especially when despair may be just around the corner. I just want to tell you a little about what I mean. One of my cats, the one that belonged to my dad is very ill. R.B. has three kinds of Cancer and a stomach tumour. I will not have her forever and I know this but I love her the most that is humanly possible and I give her the food she likes and bought a special bed so she is comfy when she sleeps. My hope is that she knows she is loved very much and that whatever time we have left will be joyous. Without that, it would be difficult for me to go on and make her life good. I am so much better at speaking than writing but I hope you understand. Your posts always make me think about life and how I wish to live it. I will stop now since I think that I am starting to ramble on a bit. One last thing thought, I totally agree with you, “normalcy is taken for granted until it is gone”.
Love to you, Nick, Henry and Andrew,
Kim
P.S. I am so glad you liked the CD. I hope it brought you peace. Someday, we shall meet.
Dear Mary,
Thank you for this post. I think that Caitlin through you is now watching over those of us that grieve. Maura’s birthday is tomorrow. I told someone yesterday that we all have good happy funny memories to cherish and then there is that moment of sadness. Though I feel that my time with Maura was always a joy… I too wish I could do it all again with even more motherly love. Normalcy is a reality that changes with time. My daughter Melissa always talked about the “New Normal”……. We are all living it now. My thanks to you and Caitlin for making us feel we are not alone.
My best to you …..Much Love……………. Enjoy Florida.
L.
And likewise, thank you to you, too. Maura was so special. xo
Sorry I spelled your name incorrectly. Be well