We are home. We decided to fly out of San Francisco on Saturday. It was time; we need to get things done here. I was sorry to miss the marches, but as my good friend Ellen pointed out:
I wasn’t sure I could go into the Boston apartment, never mind sleep there, but we did, and it was actually somewhat comforting. Also, by chance, my sister and brother-in-law were staying in Boston that night, and it was also comforting to spend time with them.
Random Thought: Barbecued Oysters
I really appreciated the notes from all of you who were grateful for the trip reports. It was easier to grieve out there, close to that spectacular coastline and those ancient trees. Caitlin felt with us. Now, home, she feels very much absent again. We will work on that.
Our last day, Jess took us up to Point Reyes where we sat at picnic tables in the freezing cold and ate the most delicious barbecued oysters. If you’ve never had barbecued oysters, you’ve got something to look forward to.
Random Thought: 2012
Five years ago it was 2012, and 2012 turns out to have been one of the most wonderful years of our lives. Viking was publishing Cascade. Nick and Caitlin and I took a relaxing winter trip that turned out to be one of our best. And that summer, after living alone in Paris for a little bit (a longtime dream), Caitlin met Andrew.
Yesterday, I found an old email I sent to my sister:
Caitlin really clicked with that boy. She said they talked instantly and forever, of ‘things’ and that he was very smart and kind. As she was telling me about him, she said “it’s like he was the male version of me,” and then her face went a bit white, and she said, ‘oh my god, that’s what the psychic told me. i would be the female version of this person i was going to meet.’
He felt the same. How lucky they both were.
Also, in 2012, Caitlin had been on a kind of wonder drug for a year. Kalydeco, invented by Vertex Pharmaceuticals, targets the specific genetic CF mutation that Caitlin had. Within hours of taking it for the first time in 2011, she felt better. She gained weight and had fewer lung infections. If Kalydeco had existed before her lung damage happened, it would have been as good as a cure. Although it ultimately came too late for her, she did enjoy a couple of relatively healthy, hospital-free years because of it, and enjoyed talking about her experience to a few groups, including Vertex and the Boston Business Journal. Drugs like this came about because of all the support for the Cystic Fibrosis Foundation, and we all thank you for that support.
Random Thought: Hereafter
Yesterday was the first day I spent alone in the house. Nick went back to work and kept himself busy. I managed to take a shower, but mainly I cried all morning. The news was all horrible and the day was gray and reminders of Caitlin were everywhere. There is a mountain of cards here and we are so incredibly grateful for them. I tried to read one or two but couldn’t manage any more, yet.
I finally decided to watch a movie that I love, “Hereafter.”
Hereafter came out in 2010 but didn’t do well, mainly I think because people went to it expecting a disaster movie–it opens with incredible special effects that depict the 2004 Indian Ocean tsunami. But it’s not about special effects! It’s an intelligent, engrossing, and very well-written movie that ruminates on whether there is an afterlife.
Matt Damon plays the part of a reluctant medium very very well.
After watching it again yesterday, I realized that it was written by Peter Morgan, writer of The Queen and The Crown. No wonder it’s so good, I thought.
In Pittsburgh, Caitlin and I loved to watch series-type shows after dinner. Our last show was The Crown, and we finished it right before she went into the hospital in November.
At the time, I looked up some of the actual events that took place in the show, including the Queen’s friendship with “Porchie,” and came upon this statement she made after his death:
She was, in turn, quoting from Dr Colin Murray Parkes, a hospice pioneer:
“The pain of grief is just as much part of life as the joy of love: it is perhaps the price we pay for love, the cost of commitment. To ignore this fact, or to pretend that it is not so, is to put on emotional blinkers which leave us unprepared for the losses that will inevitably occur in our own lives and unprepared to help others cope with losses in theirs.”
With this quote in mind, I want to point out that we are always going to want to talk about Caitlin, even if our voices crack and our eyes fill up. The pain of our grief was definitely worth the price of our love, and we’ll be paying for the rest of our lives. That’s okay.
With much love for all of you as well,
23 thoughts on “JANUARY 24–The Price We Pay”
Oh, Maryanne, I cannot imagine how it must feel. I continue to hold all of you in my thoughts, and I send love. I wish I could do more. If I can, do let me know. ❤ to all of you.
I am glad you are home although I know how difficult it must be. Henry must be glad to see you and hopefully is smoothing you with dogey kisses and helping any way he can. Thinking of you always.
I NEVER KNEW CAITLIN, BUT FEEL LIKE I KNOW HER A LITTLE BIT AFTER READING YOUR BLOG. I LIVE IN ASHLAND AND THINK OF YOU AND YOUR FAMILY.
Maryanne – thank you so very much for continuing your posts and sharing it with me and all the others. Several of my friends here in VA are also reading it and raising you and Nick up in prayer Your thoughts, your experiences, your pain, your memories are so poignant. It means a great deal to be able to see inside your heart and your head. It’s so beautiful in there. How fortunate Caitlin was to have you two for her parents. So incredibly lucky was she!! <3.
I’m so glad to read these words, and glad you got back safe and hope you feel her there soon. I’m sure she is there, just hard to feel through the pain maybe. I have thought many times too that the price of losing Caitlin is nothing compared to the pleasure of knowing her. I loved The Crown, too. I’m so glad Caitlin got to watch it! We started watching The Young Pope last night and I said out loud, Caitlin would have loved this. Today, more radio signs I think after I asked for them. And some visions (though that word feels grandiose) in reiki on Saturday. You and Nick and Andrew were there, too.
You are so kind to allow strangers such as me into your lives during such an intimate, painful time. I have to say opening your heart up in this way requires a strength that I admire and I have learned so much from. Always in my prayers.
Maryanne: How beautiful a piece & for you to write so honestly about your last weeks without sweet Caitlin for all of your family & friends to read. I absolutely loved reading about her great year of 2012 & the relief she got from the Vertex Pharmaceuticals drug. And seeing that absolutely gorgeous picture of her & reading about how she met Andrew made me feel happy to see that she had some joyful times despite her health struggles. I am so sorry that I have not been able to reach out to you directly & that I’ve only been able to talk about what all of you have gone through to members of the family & my friends who saw the wonderful story on TV & wanted updates from me. I hope you have not interpreted that as my not caring or thinking about Caitlin, Nick, & yourself b/c you have been on my mind ever since I first heard that Caitlin wasn’t doing well. YOU & Nick are amazing & are such role-models of strength & what incredible parents are like & do for their children. I love you & hope you know that I am always here for you. Love, your cousin, Mary Ellen XO
It’s nice to see Nick smile.
On one of your recent posts, you mentioned seeing signs of Caitlin. I want to tell you about a book called “The Butterfly Club” by Phyllis Calvey. She is a woman I know from Bellingham. She told true accounts of people seeing signs after their loved ones passed. I lost my mom almost 8 yrs ago and have seen many signs, mostly butterflies…amazing. you can purchase this on Amazon or let me know and I can get one from Phyllis. You are in my prayers.
Deb Sesona Francesconi
Thank you so much! I will look for this. xo
Maryanne, I’m glad you are home safely and remember with my mom how bleak was that period when it was time to get back to living and what a hard time I had. We survive somehow. I loved those quotes about grief – I have always believed that – grief is proof of love. The deeper the grief, the greater the love. And that love is what comforts us in the dark. The memories and the reality if it. One thing a lot of people told me when my mom died – this is your time now. No excuses for what you can’t do or can’t say or what you need to do and say. You have a blank check to go through this however you need to – for whatever time it takes. You own no one any thing now. You did your job and now have to go through your own process. So push or don’t push but don’t have expectations and don’t judge yourself. xxxx
I keep telling myself that, Melisse. Thank you for the reminder. ❤
It was so good to read all of this. to see the pictures. To hear of years like 2012. To hear of Caitlin and Andrew– and you knowing it was a ‘ click ‘. Caitlin really has become an angel for me. I call on her. Thanks to you she is very alive in my heart and consciousness. I can hear her. I hope you will write on and on …, wish I lived closer right now. ❤️
I miss you!
Thank you for continuing to share, Maryanne. And I love seeing the picture of Nick and his infectious grin. And the cute picture of Jess.
But mostly I love the picture of Caitlin from the Boston Business Journal article – because to me she comes alive in that picture. Her beautiful personality comes through, but also I can see her mannerisms in how she spoke – I can just imagine her now. I will come back to that picture often, I’m sure.
Maryanne, you continue to teach us. In the deepest parts. With gratitude. Ken Segel
❤ thank you
Maryanne, I so love reading your writing here. I just got my copy of Cascade today and am greatly looking forward to reading it (whenever my 2 little ones allow me scarce moments).
Those oysters look amazing. It’s fabulous that you and Nick got the chance to ‘take’ Caitlin to California.
Grief is so difficult. I agree wholeheartedly that it’s the price we pay for love, and a price well worth paying.
Funny you mention Kalydeco. I have a background (and degree, which may or may not ever serve me in real life) in biology and have been watching some biochemistry lectures on youtube about a variety of things, just to keep my brain active. I stumbled upon some explaining CF in more detail than I ever understood, and while these lectures are a few years old they made mention of ivacaptor as a new treatment. So happy to hear that Caitlin was able to squeeze out some benefit of that new therapy and had a few awesome years. I am a bleeding heart so it still pains me to thing about what might have been. I’m willing to join you in the fight to change the transplant system for lungs and also for a new garden.
Anyway, I look forward to reading your book and all that you post. My heart and love go out to you and Nick and everyone close to your precious daughter. I love reading about her through you, who knew her best.
Much love and peace to you. xoxo
Thank you so much for your notes, and for reading. And for offering to fight for things. I will keep you posted.
Maryanne I am so sorry for your loss I know how You feel, as you know I lost my father the same day and when Melissa called to tell me Caitlin passed she was so upset and could barely talk to tell me. As I hung up the phone and went back upstairs to see my father he had passed. To call Melissa right back and tell her that her grandfather just passed away , she was so heartbroken and we couldn’t even talk to each other because we were crying so hard. People say time will heal a broken heart I don’t feel that way, my mother’s been gone 17 years and my heart is still broken and now my father is gone. Yes we have to continue on with our lives and it will be hard for many years to come but always remember the good thoughts. As I look at your daughters pictures and how beautiful she is and how strong she was just amazes me. Also she looks so much like Melissa, and Melissa loved her with her whole heart ❤️ always Cynthia
Thank you so much for checking in, and I am so sorry for your own loss. I didn’t realize the timing was as it was… my God. Very sad. xo