Category Archives: St. Therese novena

DECEMBER 24–All is Bright

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“Like the Madonna,” her Irish great-gran would most definitely have said.

It’s Christmas Eve, a night for faith and hope, no matter what your faith, no matter what you hope for.

Last night, a visiting friend said he was angry, said, “That’s where I struggle with faith. How could any God allow that to happen?”

“No, no, no!” I said. “Please don’t think that. I need to remind people not to think that.”

Caitlin would not have changed the fact of her cystic fibrosis.

Let me underscore that: Caitlin would not have changed the fact of her cystic fibrosis.

Caitlin believed, as do I, that earthly struggles make you a better, stronger, and more loving and compassionate person.

I’m no super-strong saint. I’m missing her terribly. Horribly. Unbearably. I fall down on the floor. I curl up and cry. I walk down to the river and pace the lawn and wonder how I’m going to live the rest of my life. Today was the hardest day of all—denial and shock setting in, remembering that just one week ago we were filled with relief and happiness, knowing she had one more chance at transplant. But at the same time, I know certain things to be true: pain and struggle are terrible but all of the mess contributes to the growth of your soul.

When Caitlin was little, she required that I sing “Silent Night,” no matter the season, to put her to sleep. Even though, to me, it was supposed to be a special, once-a-year Christmas Eve song. My entire life, I’d loved Christmas Eve more than Christmas. I loved it to be silent and quiet and sacred—-dark but with a sky full of stars. Caitlin made me realize, from her earliest years, that all evenings could be sacred.

It was raining today and it’s still cloudy tonight. There are no stars to see, but I know they are there. And although I know Caitlin is there, somewhere, in the form of bright, loving energy, I will just miss her so much. Her face, her voice, her charming, lovely human presence. But I want to remind everyone of her own words, just one month before her passing, on November 20, on this blog:

There is so much suffering in the world … so much. My belief though at least is – the world was not meant to always be fair or fun or easy.  The world is teeming with life, and death, and pain, and Donald Trump even haha. We just have to keep living. Step back. We are just tiny beings. There are lobsters living at the bottom of the ocean for over a hundred years. They have just been sitting down there through all of our lives and wars and lives before us. We aren’t that much different from lobsters really if you pull back a little. All part of this teeming painful wonderful world where so much is just luck. But we can choose to be kind, and to keep trying — we have the power.

 “There is a crack in everything. That’s how the light gets in. ” Leonard Cohen

 —Caitlin, November 20, 2016

And her very last words, texted to me to post on December 3, right before she crashed:

I love my mummy for everything she does – there are no words. Nor for andrew and my dad. They are all so caring. focused their lives directly on me. it is hard to reconcile how that can possibly be ok. But I guess it’s what we do as humans.

Heart and humor, and humility he said will lighten up your heavy load. Joni Mitchell refuge of the roads.

So much outpouring of love and attention makes humility a challenge, but I am so grateful for it. Heart and humor are easier. They feel like the only directions to go right now.  Joni Mitchell’s words feel like permission to let go.

I do realize that not everyone who reads this blog is experiencing a big emotional moment in their lives …that sometimes life skates around on top where things are delightful and easy. And I’ve been there and hope to be back, even though I love to cry (with happiness!).
I couldn’t be further from the road right now in Joni’s song with its literal talk about the refuge of anonymity, cold water restrooms and and a photograph of the earth in a highway service station. I am consumed with myself and it’s boring and uncomfortable and embarrassing to have so much attention. And I LIKE attention. At the same time I can’t stop – in order to keep going I have to focus on myself. Self self self. It feels so anti human. It is. I rely on others completely and ultimately, finally will rely on another person to keep me alive.

My thoughts these days aren’t the skate on top kind of normal life thoughts. They’re up and down and trippy and depressive – and we have a lot of laughs. And lots of crying. And weird creative urges. I just want to say thank you for listening to what sometimes must be very emotionally over the top sounding writing. And to reassure you I don’t take myself too seriously. I do take life seriously though, I’ll be honest …. because it’s a seriously wild business.

Thank you for the support – I know I wouldn’t survive at all without it. It’s such an easy thing to say. But truly, i’d be dead by now! I am so very grateful even if I am a bit off the grid lately and I’ve faltered shamefully in my thank you notes – I don’t think I’ll ever get to some of them. But – I’m here, and thank you. And I love everyone very much and love hearing from people even if I am not able to write back.

–Caitlin

DECEMBER 11 — Light Snow, Quiet

Sorry for the lull in updates, but things are pretty quiet in the CTICU today and that’s a good thing. It’s been snowing lightly all morning. Christmas carols are playing in the lobbies. Winter has come, and we always felt she’d be transplanted in winter.

She’s had dressing changes, adjustments to the ECMO, constant monitoring, tinkering, to keep her stable.

Can I just say right now that the ICU director doc, Penny Sappington, is probably the most dedicated doctor I’ve ever known? And we’ve met a lot in Caitlin’s life. When she’s on the floor, which is thankfully almost always, I relax. Sort of.

The nurses, ECMO team, and RTs are phenomenal, too. Caitlin has most often had Erin, who is one of those absolutely perfect nurses. She’s off for a couple of days, but has already texted me to make sure we’re having an okay day.

Just typing that makes my eyes get all weepy.

All this is to say that they are taking really good care of the kitten. The kitten we’ve always known is really a tiger.  🐱🐯  She’s mostly sedated to keep her calm and keep her oxygen saturation up as high as possible, but when she’s aware, she fights, digs her nails into us, tries to shout. Her spirit is so strong.

I play the music she asked me to play for her if she was ever unconscious. And I tell her things—-mainly that her only job now is to stay calm and be strong and trust that we’re taking care of her. I read essays from the new Mary Oliver book. We constantly tell her how much we love her.

So we had almost 3 years to prepare for this, but only last Sunday, when she was clearly deteriorating, did I think to ask for her phone password, and account information for the bills she pays. I’m home for a couple of hours paying my own bills and trying to figure out hers. I opened her computer to this image: a screen shot she’d taken when she was starting to really feel sick but still managed to not look so bad, right beside the kind of lists she was constantly making to keep track of her inventories, etc.

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Her life has been hard for a very very long time. Much more than she ever let on. I hope she gets this second chance, and is able, eventually to just relax and live a little.

As I am writing this, our dear friend Reggie sends these happy memory photos of the Christmas she once spent with us.

 

Nick’s good friends are doing their best to get a lot of awareness out there, not only for Caitlin’s critical need for lungs, but for all the critical need out there. We’re so grateful!

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I’ve mentioned before how wonderful everyone here has been. Food is coming from everywhere. Every time I realize I’m starving, a delicious sandwich or salad turns up, delivered by caring friends we have made here. And our 15th floor neighbors, Ralph and Mary—–man, they are like family. Here’s Henry, quite comfortable with his pal Ralph this morning.

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And for everyone doing the St. Therese novena, I opened my Twitter account this morning and this was looking at me.

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–Maryanne, with Nick and Andrew