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
9 Lives Notes 
Tonight, as I light our Menorah on this first night of Chanukah I stare into the bright candlelight and think of Caitlin. I remember her in lower school at Fay when as the Room Mother I would bring to class this same Menorah along with dreidels to play with. We would fry potato pancakes for the class to eat making the rest of the lower school so jealous as they could all smell those potatoes pancakes frying! Caitlin was always a bright light in that class and we will always remember her. Let her memory be a blessing forever…..
Beautiful writing from two beautiful women❤️
Love and miss you dear friend but I get relief in knowing you are watching over us🙏🙏🙏🙏
Heartbreaking and beautiful, both of you. Thank you for sharing your pain, Maryanne. You’ve always been a very private person, and it is a gift for you to let us grieve with you. We all care so much! What a beautiful soul was Caitlin.
I love the reading your posts. They are so inspiring. How did you learn such a thing? It truly is amazing how strangers can touch your life, so deeply. I thank you for tonight and tomorrow as i take a deep breath, especially at yoga practice.
Kitten Caitland- I wish upon your strength to more people. We would be better people at dusk.
~ namaste ~
I think I said that despite this Damocles sword hanging over you, you all had such a wonderful life together but I probably should have said “because of.” You and Caitlin have always had such a keen awareness of mortality but rather than wallowing you used it to seize every day, every moment. You both always understood the futility of waiting. And you have showed us all how to live and not just skate on top.
I am only one of hundreds, if not thousands, who are overwhelmed with the urge to want to help/fix/make it better for you, but I know that there is nothing anyone can do except ride it out with you and look to the future for better days when somehow this loss will become bearable for you. We will read and reread every word as we have been doing, we will try to share your pain and we will hope that you will ask when there is something that can be done to help you. Above all, we will hope that you will take care of yourselves.
Your family has touched many lives through Caitlin. You have so much ferocious love and support and kindness being sent in your direction, you really have no idea.
So much love to you all.
I can’t tell you how many people have messaged me or come up to me about how touched they are by Caitlin and her words. Ferocious positivity! Her light and message grow like ripples in a pond. Merry Christmas Eve!
Maryanne, you have been in my thoughts. It is ironic that your words and Caitllin’s are helping me understand why things turn out the way they do sometimes. You are an amazing mother with an amazing daughter. May love and kindness surround you. You are a special family.
With love,
Carolyn Deadwyler
Briarcliff Woods Book Club, Atlanta, GA.
Caitlin and the Oharas have made us all better people this Christmas .
Keep the Faith
Maryanne, your post yesterday was both beautiful and heart breaking.
Just now, I learned a valuable life lesson from Caitlin. I, too, was consumed with anger and doubt when Caitlin lost her fierce and heroic fight. I believed in my heart that Caitlin was going to be our Christmas miracle. Eileen and I clung tightly to that hope.
Caitlin has made me re-think my anger and doubt about God and the power of prayer.
As cliche’ and trite as this sounds, Caitlin truly was a marvel – a unique and remarkable young woman.
I feel certain that many of us will continue to learn from Caitlin through her insightful thoughts and wisdom well beyond her years.
Thinking of you tonight… looking for her light in the sky… hurting for your pain… always with you Maryanne all day long. Caitlin’s impact is so powerful and so strong — as are you.xxx
You put to words what so many cannot.
Thinking of you tonight and wishing you a Merry Christmas. I can’t even begin to explain all of the beautiful and random signs I’ve been seeing and feeling of Caitlin’s continued presence, it’s been giving me chills. I miss her so much, my whole body aches, but I am glad to know that she is still with us all in spirit. Big hugs!
Girl, I’m going to keep talking to you forever, and heeding your endless wisdom.
One of the most inspirational beings I have EVER known.
❤
Thinking of you and praying…
Can’t even begin to tell you how much I appreciate all of this, Maryanne. . How extraordinarily powerful and sacred is this sharing of grief and love. I remember reading Caitlin’s words on November 20 ( my birthday) and knowing I was encountering a gift that would go on giving. And now this Christmas gift from you. I’ll never hear Silent Night the same way again. Sending love and tears and thanks and prayers for grace when the hardest moments come. Love, Jane
Jane, I’m so glad Caitlin and you met. You’re the best thing that came out of Pittsburgh for me. I miss you and love you.
Maryanne! I am so with you in spirit! Crying and praying and feeling in awe of what you give. I keep thinking of that day I walked out of the condo after meeting Caitlin and I kept repeating to you in the elevator, ‘wow, she is so beautiful ‘ and felt the words I was saying didn’t do justice to what I sensed so immediately about her. I feel so incredibly blessed to have met her, and you, my soul-friend. Know that you are surrounded by love and that Caitlin is very much alive, and not just as the light of her love but as her very own particular soul with all those hard won utterly distinctive qualities. A hospice nurse recently told me how powerful it is when someone before they die looks so surprised and thrilled when they understand they’re being greeted and welcomed by their loved ones. She said this is very common and she cries every time when she sees the relief of the reunion. I know that you will one day feel the relief of that beautiful reunion with Caitlin, and that in the mean time you will be surprised again and again by the way she continues to send great ripples of light and love through the hearts of countless people. I believe she is doing that through and with you. Sending you all my love here on Christmas night. Jane
This Christmas probably doesn’t feel like one. I can’t imagine loosing a child and I am deeply sorry. I did have to face death which is a little less stressful,however, so I know something about death
But I would begin with love which is a mystery. Why do we fall in love and what about the miracle that occurs. When love resides with us As basically selfish people we suddenly find there is nothing we won’t do or sacrifice for this person. We are happier then we ever dreamed we could be and the reason is simple. Love has made us larger than ours selves We have entered a new universe and we r not at the center of it. We have become spiritual
Death is also a mystery. We can’t explain it or understand it Religions tell us to expect different things and some people that have come back from the dead seem to confirm these things. My theory is that this momentary universally we feel on earth when we love each other is set loose of all constraints when we die.We are in a place where only love rules and there is peace
This is where Caitlin is now. She sees all of our love and she is preparing a place for us as we would have for her if we had been fortunate enough to get there first Congratulations Caitlin on your new more per ant place of joy. We miss you
So beautiful and comforting. Thank you.
Oh my God, Maryanne. I just read that out loud to my mother & am sitting here bawling. You are so unbelievable to be able to share Caitlin’s final moments with all of us on this blog. Thank you so much for doing so. The only problem for me is that I wish terribly that I could talk to her about what she wrote (esp. her Trump comment that is adorable:). I can’t imagine how sad you & Nick must be right now, but I hope you are able to realize that Caitlin was the beautiful, smart, funny, thoughtful, & caring person she was b/c of the way that the both of you as parents raised her. I wish you peace in the days ahead. XO Mary Ellen
From someone who knows you just slightly, please know I spent Christmas Eve mass praying for you. But I know you are strong, and you have Caitlyn’s words to keep you whole, and her ongoing, ever enduring love. How kind you are, through this post, to give others peace…
❤
Tears of sadness and joy. Thank you, Maryanne.
Such a beautiful post, thank you for sharing. As a woman living with CF I have such gratitude for your insight and perspective. I honestly don’t know how you moms do it! Sending you and Caitlin such love and light ❤
P.s. Is it alright with you if I share this post on FB?
Of course–the purpose of the blog is to share her story. Best to you. xo
Thank you, too beautiful not to share ❤
Maryanne, we had a beautiful Christmas Eve service which focused on the light of Christmas and the healing that light brings. May Caitlin’s light continue to bring you joy and love and healing. Your wisdom about the purpose of earthly suffering is such a testimony and I pray that you feel God’s love, light and comfort today 🎄
❤
Such a beautiful photo of Caitlin. Thank you for sharing it and all your words about your precious daughter. Maryanne, I think of you all the time and my heart breaks for you. I have found for myself that one of the greatest challenges of life is to learn to go on when one loved have died. I am not very good at this but I feel that Cailin has inspired me to reach out more to life and not give up. Perhaps in some very small way, I can live the life that she cannot have. Perhaps this does not make sense. I wish I could do something for you but I know that is impossible. I wish I had been able to meet Caitlin but feel I know her a little through your beautiful writing. Peace and love always.
Each word is more powerful than the one before it Each picture of Caitlin more beautiful than the next. Thanks for reassuring us of your shared faith. Once again we’ll follow your lead and try to find the light.
At church a connection from earlier days and a friend on Facebook stopped me to let me know that he found Caitlin in a sunset on Christmas Eve eve. I was so touched to know that her story captured his heart. Live on sweet memories.
Caitlin’s words (and yours) lifted my sagging spirit many times yesterday. Her beautiful light shines on and promotes positive thinking and I thank you for sharing her with us.
More beautiful words. Thank you from all of us who have lived through the roller coaster that is CF and who continue to live through it.
Maryanne and family
I read your subsequent posts and will add to the “you don’t know me . . . But I hope I don’t bother you” posts in the hope it brings some cathartic satisfaction to your recent loss of your daughter Caitlin.
First may God bless you and your family as you both grief and celebrate her life. I can tell already by reading parts of this blog that you realize the beauty of her death and how she is now breathing much easier now. Plus what incredible awesomeness her death has brought with the outpouring of attention to organ donation, CF, and her garden!!! It seems to me that she would be quite proud to know she could have such an impact on this world.
Second I was touched by this blog because I myself am an almost 40 year old cystic fibrosis patient. However I have been fortunate enough to undergo a double lung transplant recipient. For that reason I echo Caitlin’s sentiments about organ donation and allocation. I especially appreciate your description that she did not want a life without cystic fibrosis. I understand that attitude and approach and also believe that we all have different forms of suffering and obstacles in our lives. But these “crosses” provoke our human emotions and make us who we are as people.
Lastly I responded to this particular post rather than your last because it contained Caitlin’s final words. More specially she mentioned completing her thank you notes. While I am eternally grateful for my donor and family, and I am still thanking them to this day, I would be honored to finish some of those thank you notes for Caitlin if that is something you think might honor her and your family.
Please let me know how and if you would like me to contact you by responding to this comment. Thank you for sharing her story and shedding light on an important and truly life-saving issue.
Thank you so much for your message. Please email me at ohara111@gmail.com
Not sure when I can swim up and respond, but I will try to.
Very much appreciated. xo