DECEMBER 21–Our Light

IMG_4124.JPGWord 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.

IMG_3927.JPGAll 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

a beach 2.jpg

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.

Author: kittenupdates

I am the author of CASCADE and LITTLE MATCHES: A Memoir of Grief and Light

133 thoughts on “DECEMBER 21–Our Light”

  1. We are so sad to hear the news about Caitlin. I keep reading this post over and over and can’t stop the tears. We will see you back in Boston with lots of hugs and kisses.

  2. I have only fallowed followed this blog just a short time. I wish I would have been following closer.
    It seems to me that your daughter was such a kind and loving person. As I read through all of the blogs from beginning to end the other day, i prayed even harder for Caitlin. I can not imagine what you are going through, but it seems as if your daughter would want you to enjoy life and love more than you think you can. I think with every passing day you will find something or many things that will remind you of Caitlin. And know that when you find those daily reminders that, that’s probably Caitlin checking in on you. As if to say hi, I love you.

    My son had a bilateral lung Transplant when he was 7 months old. He was born premature with very bad lungs. He had hypoplastic lungs and chronic lung disease. My amniotic fluid broke when I was 23 weeks. And i was hospitalized until I delivered him at 30 weeks. He just never had the amniotic fluid he needed to breathe and help his lungs develop and be strong. So at the age of 4 months old we moved him from our local Childrens Hospital in Michigan to St Louis Childrens Hospital in St Louis Missouri. He was placed on the donor waiting list and 3 months later received his lungs. We are greatful every day for the donor and his/her family. My son is now 15 yrs old. He has had many obstacles come his way. He is developmentally delayed but he loves life and everything it offers him. He still smiles when he is sad, or when something up sets him. He is my biggest hero. Every visit to the transplant doctor for testing is always an unknown. But we pray and have faith.
    I just wanted to share my son’s story.

    My hope for you all is that you are able to find some way to honor your Caitlin, so that she may love on in spirit. I am sending you many hugs and prayers. Xoxo Michelle

  3. I cannot tell you how sorry I was to hear this tragic news. And I cannot tell you what a privilege, honor, and inspiration it has been to get to know people of such courage and grace as you, Maryanne, and through your writing, your husband and beautiful daughter. I suspect that many others who have read these insights feel the same way. Thank you and God bless you all.

  4. I discovered this blog early on the morning after Caitlin went into surgery for her transplant. I found it through the comment a relative had left on your Facebook page, someone whose infant son went through a liver transplant before he even turned one. I’m from holliston, MA, so this hit close to home in more ways than one. But really I was just so touched reading through your blog, by the picture you painted of your daughter, by your resilience through your whole ordeal. I eagerly refreshed your page, hoping for good news about Caitlin. The morning that I hit refresh on my browser and saw the news, my tears were very real and my heart goes out to you all. Your unwavering optimism and hope is both unfathomable and inspiring, and has made me realize how grateful I am for everything I have in my life. I am truly sorry and devastated for your loss, but please know that your daughter’s struggle will never be forgotten, and I also hope that it will bring attention to issues regarding transplant protocol that need to be addressed in our country. Above all, I wish you all the best while trying to heal after everything your family has been and through and will go through. I was so, so sad to come to the end of this story, and I don’t know what I could say to help you cope, but thank you for sharing your beautiful daughter’s story. May you find peace in this tremendously difficult time.

  5. Dear Nick & Maryanne, Seth & I just started following the blog this week & were ecstatic to hear that Caitlin received a transplant! We were so thankful for you to have received such a gift this Christmas. God’s plans were different from our hopes, however, and although we don’t understand why, we pray that you are able to find comfort in His arms, just as you used to hold Caitlin in yours. We never had the opportunity to meet Caitlin, but had been praying for her and your family often over the last few years. We will continue to do so, especially now. We are so, so sorry for your loss… Seth & Shyla Campeau
    “The Lord is near to those who have a broken heart…” Psalm 34:18a

  6. My name is Lillye Ramos Spooner. I am a friend of the McLaughlin family. My husband was a lung transplant recipient. I wanted to let you know that my circle of family and friends prayed and prayed for Caitlin. We have all been impacted by her death. I am so sorry. Words cannot convey the depth of my sorrow. You are not alone, and never will be. Her absence is your company.

  7. A million emotions just came back into my heart.

    I lost my soulmate and love of my life 13 years ago to CF. There isn’t a day that goes by that I don’t think about her. She decided about 4 months after succumbing to infections and barely making it through, to pull herself off of the list. It was a VERY hard time for us. We cried about it a lot. In her heart, she knew she was too weak to go through the trauma of a transplant and wanted to give that chance of life to someone else. In my heart, I was selfish and wanted her to try anything, at any cost to give me more time with her. But ultimately, it was her decision and I respected it. The only thing that helps the pain and the empty spot is knowing that she is now breathing easy and Heaven has a new angel.

    Thank you for this amazing tribute and loving post. May God bless you, your family and all of her friends. Say hello to Ali in Heaven for me Caitlin. Godspeed angel.

    *** I know there will be a lot of 65 roses patients coming by to read this beautiful blog post and I just want to let you all know that I still pray that we find a cure and I pray for your health and happiness. God bless you all.

    1. Thank you so much for sharing your story. I worry about Andrew, who put his life on pause for the last 2 1/2 years to devote himself to Caitlin. We never expected this outcome. It has helped me to hear from other mothers who have lost their children. I will share your comment with Andrew.

  8. As I posted on my Facebook, my wife Christina’s story and Caitlin’s story are similar.Christina passed March 04, 2016. I’m very sorry for your loss, I don’t think I will ever get over it. May God give you abundant grace. Sincerely, Jeffrey P Elliott.

  9. i am so broken right now after hearing of caitlins passing.. i am so so sorry for your loss i can seem to stop crying …may god be with you at this time..i wish i could wrap my arms around all of you right now..hugs to you all from us here in canada

  10. Dear Maryanne,
    I expect no reply from you but wanted to send you a personal message. I met you and Nick last winter at the Dinette in Pittsburgh at their counter. How very coincidental or unexplainable I am here tonight at the Dinette when I got on your blog and I was so shaken by the news to hear about the unspeakable loss of your beautiful daughter, Caitlin. I have tears running down my face here at the counter for you and Caitlin. I imagine there is no pain more far-reaching and deeper than losing a child. My heart and prayers go out to you, Andrew and Jess at this most difficult time.

    I know none of my words are even close to being adequate to express the sorrow I feel for your Tremendous loss. As I read your blog and felt like I knew her as you described her, the things she did and how much courage and compassion she had for others. Caitlin was incredibly special, a blessing and an inspiration to everyone around her. I am so blessed and lucky to have met you last winter at the very place I am right now at this moment. Maryanne, you have touched my life deeply by sharing the intimate details about Caitlin and your family. I will never be the same and I promise to carry Caitlin’s light with me, in my life and share it with others.

    I am without words really to express my sincere sadness and I would like to share with you the quoted words of the poet Ellen Brenneman, “We can’t know why the lily has so brief a time to bloom in the warmth of sunlight’s kiss upon its face before it folds into its fragrance and bids the world good night to rest its beauty in a gentler place. But we can know that nothing that is loved is ever lost and no one who has touched a heart can really pass away because some beauty lingers on in each memory of which they’ve been a part.”

    If you and your family need anything at all, I am here and would do anything for you. Love, prayers, constant thoughts and hugs to you. Nanci Sullivan of Pittsburgh–to Caitlin’s light and life: “As you danced in the light of joy, love lifted you. As you brushed against this world so gently, ypu lifted us.”

  11. Mr. & Mrs O’Hara,
    Caitlin was indeed an excellent art history student and an even better human being. Empathy is the foundation on which both are settled. Caitlin had it in abundance. I am so sorry for your loss.
    Prof. Craig at BC

  12. My prayers are with you as a Mother to bring you strength. I didn’t know your amazing daughter but I’m certainly touched by her spirit and faith in kindness! I’m great friends with Pamela Danforth, Jess’ Aunt, who needs prayers herself for stength and endurance in her life!
    I can’t imagine your pain but will keep you in my thoughts and with Caitlins’ spirit keep kindness there as well!

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