Word is getting out, so I will speak. After my light-hearted update yesterday, everything spiraled out of control. After an early morning EEG which showed slowed brain activity, morning rounds showed that she had no responses at all. Her left leg had no blood flow below the knee, contributing to her worsening condition, and they had to remove it. Then a CT scan showed a massive brain bleed, the one thing she had always been terrified of. There was no hope.
The lung allocation system is so broken, friends. If she had received these perfect lungs earlier, all would be different. She should never have ended up on life support with the score she had. All the allocation systems are different, for each organ. Liver is the only one that works—at a certain score, need overrides all regional allocation.
Her doctors were in awe of her—that her tiny body endured so much and kept going.
Yesterday, Sinead experienced a reading of Caitlin that was urgent and stunning and accurate, as all of her readings are. She spoke to the surgeon, on his way into the operating room, and he listened.
The wisest doctors know that this life is mysterious, and that they don’t have all the answers. The care she received at UPMC was loving and extraordinary. We are grateful.
We numbly stumbled through these last weeks, but looking back now, I realize with horror all she had to endure. She was terrified when she was put on ECMO: essentially locked-in, immobile. For the first two days, she could speak, but got so agitated she had to be intubated and sedated and then she was in and out of consciousness.
And before that? The last two and a half years, every day was a wake-up-and-do-it-all-over-again effort to stay healthy enough to survive the transplant surgery: force down so many calories in an effort to maintain her 97 pounds, lengthy breathing treatments, chest PT, exercise.
All the while, she tried to “have a life.” She was teaching herself guitar until she could no longer sit up and hold it properly. She worked tirelessly, from afar, to help create and run the Friends of the Prouty Garden; an advocacy group for Boston Children’s Hospital’s world-famous healing garden. The group, despite massive outreach and supportive press, ultimately failed to save the garden. The day the 65-foot Dawn Redwood was cut down was the day she finally crashed and ended up on ECMO. I know that seeing that tree killed killed something inside her.
Nick is broken and strong at once. She was so lucky to have such a giving father.
Andrew—-never was anyone so devoted to someone. Caitlin loved him with all her heart.
Jess flew in like the wind last week, like the angel she is, after having her chemo in San Francisco. She had to fly back for her experimental cancer drug yesterday and so was not here for the end. She will join us in Boston tomorrow.
To all of our family and her closest friends: She loved you all so so much! She was having an argument with me about something once, not long ago, and she said, “You think all this is important but all that really matters is loving people and being kind.”
We are going to go home and figure out what kind of service to have.
She did not want to be buried. She did not want to be cremated. She wanted a mausoleum and we are arranging that. I know she wants a service where everyone can have a good cry and a couple of laughs. We will figure it all out and I guess I will post details here.
Caitlin and I do believe that the soul lives on. I know she is out there, but I will just miss her so much! She is my soul friend. She is my person. I really don’t know how I will live without her. When she was very sick twenty years ago, I remember thinking, “If she dies, I’ll kill myself.” I know I won’t do that, but this gaping hole is never going to close, I know.
We do have weird things happen with “pennies from heaven,” and last night, as they turned off the ECMO machine, I saw there was a penny on it. Birds, always a motif in Caitlin’s life, were doing all kinds of strange things this week. I wanted to read them as signs she would be okay, but I feared they were signs that she was going off into the light.
Sinead sent me this message this morning:
Caitlin Elizabeth O’Hara
July 31, 1983—-December 20, 2016
Today is apparently the darkest night in 500 years. The solstice and an eclipse. Please look at some form of light today and remember Caitlin and the light she carried within her all her life. Share that light. Please keep Caitlin’s light alive.
She loved Freddie Mercury. And loved his cat vest. And this song, which always breaks my heart.
9 Lives Notes 
My heart is just broken for all of you. Caitlin’s strength was an inspiration. I hope you can find quiet moments of comfort in your grief that come from knowing and loving a truly beautiful soul. We will remember her and continue to share her light.
Maryanne & Nick,
We are so, so sorry. We have been thinking of all of you and praying for Caitlin each step of the way. Our hearts are broken for you and we are sending you strength and love. You have all fought such a hard fight and we are holding you in our hearts in the days ahead.
All our love, Mollie & Michael Talmanson
I have only followed for a brief time, and have checked on updates every few minutes. Something about her energy and light pulled me in and I couldn’t let go. To read this update this morning guts me to my core. I have lost 3 friends this week -all unexpected and tragic. What I want to do is crawl into bed and cry but what I will do instead is go out there and make a difference in honor of Caitlin and my friends. I’m not sure in what capacity that will be, what form it will take, but I will find the strength and whisper the name “Caitlin” as I do. God give you the strength and peace during this terrible time. I am so very sorry.
Lisa
Minneapolis, Minnesota
An amazing spirit she must have had and now and forever will be. God has already blessed you all with her love and you must know she’ll just be on the other side – watching over you until you are reunited.
May Caitlin’s memory be eternal.
My four-year-old just asked, “Why do you have tears, Mama?” My heart aches for you, Maryanne. It just aches. I’m so incredibly sorry, but sorry is not enough. I also believe that the soul lives on, and one day you will be reunited with your beautiful child.
I am so sorry for the loss of your daughter. I hope you don’t mind a strangers post as I only know of Caitlin through a couple of her good friends that are also friends of mine. Though I never knew her personally, she has inspired me. I’ve been praying for you and her along with so many others who never knew you! You all have clearly touched so many lives with how you bravely fought this battle. Yours is a story of true love and hope that we can all learn from. During the upcoming holidays so many of us will be thinking of your family as we hold on to ours a little tighter. Thank you so much for sharing. Her legacy will certainly live on.
Michael and I are so sorry to hear of your loss. You all have been in our thoughts and prayers and will continue to be.
Maryanne, I am heartbroken over the loss of Caitlin. She was a wonderful person. Your family is in my prayers at this most difficult time.
Karen Ryan
Sad to hear of the passing of Caitlin! Our sincere condolences,Mike&Donna
We cut our tree in Maine and it is sitting outside in the corner of our patio here in Lexington, When all 700 lights come on at 4PM, we will think of Caitlin and promise to keep her light alive. Love from Anne and Walter
May Caitlin’s memory always be for a blessing … wishing you strength and comfort
I am so sorry, Maryanne. Caitlin’s light is so bright, so painfully bright. Love, Jessica
So heartbroken for you and your family. May you find comfort and peace in your memories. Thank you for sharing her story!
To Maryanne and the entire O’Hara family…my heartfelt and self-experienced sympathies. You don’t know me, but I stumbled across your Facebook page just an hour ago in that roundabout way we all sometimes do while browsing. The common thread being a post that my step-daughter had recently shared on her home page regarding Morgan Yoney, a fellow transplant receipiant with your daughter at UPMC. Morgan had asked for prayers for Caitlin and posted Caitlin’s home page/blog. Reading you and your daughter’s recent entries broke my heart and brought up vivid and tearful memories of my wife’s struggles with COPD that, unfortunately, lead to her passing in September of 2015 after being diagnosed seven years earlier. As honestly expressed in your blogs you and your daughter – similar to my wife – showed great courage and attitude during those tremulous times your entire family has endured and I felt compelled to reach out to you. May God grant you the peace and understanding you all deserve. Caitlin, like my wife, is now breathing freely. Don’t forget to “breath” yourself.
I’m so sorry on the loss of Caitlin. May she soar with her new wings ❤
I am not in your circle of loved ones but I have been following Caitlin’s story, sending all the positive energy I could send, imagining a new life for her. I am so sorry, so incredibly sad for you and Nick and Andrew and the community that supported Caitlin so lovingly. My condolences.
Many prayers for you and your family. ❤️
I did not know Caitlin. I learned of her transplant through other transplant patients that I follow. I am so sorry for your loss. I knew her journey would be long, but I did not expect to hear this news today. I am a nurse and think often of being critically ill or dying. I would never want to be in a state where I could never care for myself. I fear that more than death.
Dearest Maryanne, NIck, Andrew and Jess I am so very sorry for your loss. Maryanne thank you so much for always keeping everyone in the loop about what was going on with Caitlin. I cannot thank you enough for that. Sending you lots of love and hugs and I will light a diya (lamp) in honor of Caitlin. Please take care and I hope to see you when you are in Boston.
just a word to the O’Hara family in Boston from a Wexfordian, Even though I never knew or met Caitlan, I am aware of her absolute Trojan battle to continue to live on this scary planet, It certainly makes you question your faith in “the man upstairs”, how could such tragedy visit one clean living, non offensive family, especially at this time of year, these times are certainly sent to “test us” I hope I pass the test,but I know its going to be a struggle, Nick and Maryanne, for what its worth, there are a lot of broken hearts on this side of the Atlantic too.Stay strong and soldier on, the pain might just ease as time moves on,………………………… a friend.
Nick and Maryanne,
We are so very sorry that the Christmas miracle couldn’t endure the test of time. Reading your comments reinforces what an extraordinary,loving and strong family you have and how special Caitlin was,and will be, in all the memories of those who new her.
Our thoughts,prayers,and support will continue for you and your family as you navigate
through these difficult times.
Jeff,Amy,Beth,Jeff jr
Magee
Maryanne and Nick…… Stu and I and our entire
family are so very sorry for your loss of dear sweet Caitlin. She fought the hard fight and we truly thought she would make it. It’s not possible for me to describe adequately in words all of the emotions I felt when I heard the sad news but tears have been filling my eyes all day. I hope Sinead’s comment about Caitlin being safe bring you comfort and some sense of peace. Caitlin was a beautiful person inside and out and I will always remember her and her strength to fight against all odds.
Maryanne, Nick and Andrew,
While I didn’t know Caitlin personally, we have many mutual acquaintances and friends. I have been following your families courageous journey over the past several weeks/months and sending positive thoughts and prayers to all of you. I am so terribly sorry for your loss. Caitlin sounded like a truly remarkable person and your bond so special. I can’t imagine the pain you are going through as a mother but I hope that you are surrounded by love and strength in the days, weeks and years to come. I will be thinking of you and your entire family and hoping that Caitlin’s memory and light continues to shine bright for all of you and those whose lives she touched.
Sending love,
Becca
Mary Anne and Nicky all the Lawson family in England are so sorry to hear the sad news and we are all thinking of you god bless you. Jo
Maryanne, I’m so sorry. My husband and I have been thinking of Caitlin, sending good thoughts and energy to her and her loving family and you, of course. Having not really known my beautiful cousin, I am profoundly affected by her loss, by your loss, by our loss. Since I started sharing her story on Facebook I have discovered the many people, mostly in the Boston community, whom Caitlin and I both knew – including my former boss with whom Caitlin interned with at the Gardner Museum. They speak about her kindness and ability to spread joy. I wish I had known her. Thank you for your beautiful and uplifting words every day. She was loved and and adored by so many. Her light will never leave us.
To Maryanne, Nick, and my dearest cousin Andrew,
No words could ever express my deepest sorrow for the loss of your beautiful and vibrant Caitlin. There was a fire in her spirit, heart, and soul. I felt it the moment I met her. Her vivacious spirit and loving nature will live on in all of you. I am here for you all, for anything you may need.
Love,
Mina
There are nowords can express what I want to say to you and Nick…..I am praying for you both now. I will forever remember a beautiful kind girl whose life was filled with loving family and friends. 🙏
To the O’Hara family….So very sorry for your loss. It is unimaginable to lose a child as it is simply not the natural order of things. Your lives were blessed to have her as your beautiful daughter. Keeping all of you in my thoughts and prayers….Jennifer Cox
Devastating to hear Caitlin has passed. I met her several times thru my son Matt Mues. She just brightened the world. Truely sorry for her and Maryanne and Nic.
” To laugh often and much; to win the respect of intelligent people and the affection of children…to leave the world a better place…to know even one life has breathed easier because you have lived. This is to have succeeded. ”
– Ralph Waldo Emerson
Marianne and Nick
We are heartbroken to hear of Caitlins passing. She was such a wonderful and courageous person. Our thoughts and prayers are with you.
Ellen and Thomas DiBiase
My prayers have been with you and your very courageous daughter since my friend, Maryann, a friend of your best friend told me of your need last week. I know too well the sorrow and heartbreak of losing a beautiful daughter and best friend to CF. Please know my thoughts and prayers are with you and your family. I pray every day that my daughter is in a better place as she suffered more in her short life than most people do in a lifetime. It is the only reason I can think of why she is no longer here with her family. May Caitlin’s light and love always shine on you and your family.
I am so so sorry for the loss of your beautiful daughter. I understand the gaping hole in your heart. Hold tight to each other as you move through these very difficult days ahead.
Dear O’Haras,
You don’t know me but I am a friend of the women at the CFF and the Hamiltons and many others with CF as I have been a Chest PT for 35 years. My heart is absolutely broken for you. Tho I have never met your beautiful Caitlin, I feel I know her…I know her journey…I so want for this disease to end. I don’t know you but I love you. I will keep helping to find an end to this damn awful disease. God bless you in this unbearable loss.
You haven’t met me but I attended Fay and was two years behind Caitlin. Reading this post and what Caitlin was experiencing was truly gut-wrenching. It puts all of our daily struggles into perspective. I am so so sorry for your loss. I pray that God provides you and your family comfort during this very difficult period. Your family are in my thoughts and prayers.
There are no words to express the sadness and sorrow we feel for you Nick, Andrew and your loving family. We have been following Caitlin’s trials and tribulations these past two years since you have moved to Pittsburgh hoping and praying. These past few weeks and days have been so incredibly difficult . You have displayed an incredible amount of strength and your beautiful words of love have shown how strong and special Caitlin was and the bond you shared. May her memory always be a blessing and may her light in your heart never dim. May peace be with you at this difficult time
Sharon and Stewart Ginsberg
I love you Maryanne. Thank you for bringing this light into this universe.
❤
I am so sorry for your loss! I pray for all of you that God will lift you and give you strength thru this terrible time and in the many years to come…God bless all of you!
Our hearts ache for you. You are in our prayers. The Aholas
To Maryanne, Nick and our precious son Andrew, We are very sorry for your loss and words cannot express our deep sadness. We were very fortunate to enjoy Caitlin’s company and could see the love they had for each other. She had an indomitable spirit that could not be extinguished. We will miss her tremendously.
Love,
Gary,Cheryl and Maria Sutryn
thinking of u maryanne and nick.. from the moran family in davitt road.. god bless u..love and light xxx
I’m so sorry. May Love surround you all.
Earlier tonight I went out to see if there were any stars in the Ashland sky. There was one just east of my house near the O’Hara house. I knew it was Caitlin. I blew a kiss to her and asked her to come again.
Beautiful gesture.
I wrote earlier but wanted to let you know that tonight I attended a candle light service at Mount Auburn Cemetery in Cambridge where my beloved parents are buried. I lit a candle for Caitlin. Part of the service included a prayer that made me think of her. It is called “We Remember Them”
“In the rising of the sun and its going down, we remember them.
In the blowing of the wind and in the chill of Winter, we remember them.
In the opening of the buds and in the rebirth of Spring, we remember them.
In the blueness of the sky and in the warmth of Summer, we remember them
In the rustling of the leaves and in the beauty of Autumn, we remember them.
In the beginning of the year and when it ends, we remember them.
When we are weary and and in need of strength, we remember them.
When we are lost and sick at heart, we remember them.
When we have joys we yearn to share, we remember them.
So long as we live, they to shall live, For they are now a part of us, As we remember them.”
I will always remember Caitlin, her courage, humanity and love.
Beautiful expression.
I am so sorry for your loss. I just started reading Caitlin’s story recently through a friend. She sounded so strong and brave, and was the light of your life. Her light will shine on. Again, I am so sorry for you and your family 💔.
Thinking of you all tonight. I’ve been following this journey for a while now and it broke my heart reading the latest post. Such strength Caitlin had and such strength you have for writing this and sharing the journey with us all. I’ve been so inspired by stories like yours and am studying pharmacy and have been particularly inspired by cystic fibrosis. I hope one day that I can help make a difference in an orphan disease such as this one, in memory of your daughter. God bless you all, and rest easy Caitlin ♡
We just heard about your loss and our sending our prayer’s for Caitlin and our condolences to both you Ray & Rania
I did not know Caitlin. One of my facebook friends did. I have been following this story, and so sorry that it ended the way it did. My prayers to you and your family.
I wish I could write words could make sense of what happened, but I can’t. There are none. I can say, however, that you allowed so many of us to get to know Caitlin through this beautiful writing. Her spirit touched all of us, and we feel her passing deeply. As much as you could feel our love and prayers when Caitlin was battling for her life, I hope you can now feel us sharing your grief. May we all cradle sadness in our heart, as well as Caitlin’s light. Please know you are not alone; our arms are around you in this time of grief.
–Betsy
Sending love and support to your family. Although I don’t know you and didn’t have the privelage of knowing Caitlin, her strength and purposeful journey have struck a warm place in my heart! May you find comfort in the joy she brought to you and so many and may she rest peacefully in His loving arms! ❤️
I’m deeply saddened by your tragic loss..
Please accept my heartfelt condolences.
She is at peace and no longer is suffering..
I know she was surrounded by love..
I’m honored that I met Caitlin several years ago when visiting my nephew, Nicky Mannella. I thought Caitlin was a very strong, beautiful, brave, and intelligent woman. I’m angry that she did not get timely lungs that would have saved her amazing life.
Your blog is very well-written. Thank you for sharing your very personal and difficult days with us. Sending lots of love from Arizona your way. Ann Harwood, aka Aunt Bobo