30 JUNE––Arc of a Life, a heart intact

I thought that losing Caitlin taught me all there was to know about love and loss and “you don’t know what you’ve got till it’s gone” but with my mother newly departed from this earth, I’m reminded that life is constantly teaching, and my faulty human self always has more to learn.

The practical side of my nature has often been bewildered by the fact that after someone’s death, the people closest to them seem to develop amnesia regarding who in fact the deceased had been. Before my father died, my mother, who had been divorced from him, always referred to him as “your father.” After death, he became good old “Dad.”

I saw this happen with others. Friends and the parents they’d never really gotten along with. Exes. Although I certainly agreed with recognizing the good in a person, I was perplexed by the all-over coloring in of the negative.

For four months now, we knew our mother could pass at anytime, but it was only during her last days, when she was definitely in transition, that the alchemic something happened inside my own brain. We were finally allowed to visit her in hospice, where she lay uncommunicative, and as I held her hand, I could not see anything but the positive in her, and wondered why on earth I’d ever been bothered by the negative.

Later, I sat at my desk to write her obituary. One’s final day is such a punctuation mark, the arc of the life laid out, with all the good (and the generally understandable reasons for the not-so-good) there in plain sight, forcing us to consider, what really matters in the end?

Some people seem to know what really matters from birth. Caitlin was one. And I have siblings and nieces and nephews who are others.

My niece Jillian summed up “what matters” very well in this Instagram post, and I would like to share it.

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This light crossed over today, on her way home to join the ancestors ✨
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In March, as covid came to Maine, we got a few hours notice that the facility she was receiving end of life care at would close to visitors for the foreseeable future. I was the only one who could drop everything and get there that day to be with her. I asked her what she wanted from the outside world. Pink lipstick she said. That sums up her personality exactly; truly a Sagittarius, bucking all social norms, always looking for an adventure…
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So I bought pink lipstick and soup from a local deli and spent a few hours with my Nana while I could. I was afraid I might never get to see her again. I tried not to show it. She told me that day that she had never thought she’d die, but she realized now that it was happening.
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For the last three months we have only been able to see her through a glass door, talking on speakerphone. Every single time was painful. I kept feeling like she was holding tight, waiting to go. Waiting for covid to pass first.
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Then on Wednesday, because she had transitioned, I was able to go see her. After months of seeing that building as an impenetrable fortress, I found myself casually walking through it’s doors. I put on my medical gown, my mask, and went to find my grandmother.
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What an honor, unexpected relief and joy to be with her as she died. To massage her wrinkled hands, her shoulders, her arms. I traced her face with my fingers the way she traced mine as a child, something I always loved, something that feels so gentle and loving. .

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Earlier that day I had an ancestral healing session. One of the many exchanges I’m in the midst of for the ancestral healing practitioner training I’m in. In the session my ancestors showed me the way she was being held, surrounded by love, nurtured… They showed me the healing taking place between her and her many years deceased mother. They showed me how well received she would be.

Humans are complex. We have as many faults as we have strengths. But at the core, this is a woman who lived and died with her heart intact. And for the example, I’m truly grateful.

These past months, I’ve been grateful to have siblings who are people of good character. When our mother went on hospice care in April, and with all of us unable to visit, we began lighting candles and texting photos of them to each other every night at 8pm. It became a lovely ritual––the buzz of the phones, the screens full of light. I shall miss it.

“Mana” and Caitlin, once upon a time.

Florence Daly Bavaro, 1936-2020 Obituary

DECEMBER 20–O.R. Revolving Door

The team just rounded. A chest tube on Caitlin’s left side is draining a bit more than Dr. D’Cunha likes. “She’s not unstable but I need to take a look. Clean her out.”

Last night, he said she would have a standing slot in the OR, every day for a while, in case they need to go in like this.

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Thanks, Syd, for this. Made me laugh.

She’s still critical and will be for a while. In the red zone, as Andrew says.

We all feel the prayers, the intentions, the healing energy, the Buddhist chants, the love, all of it. All of it. Thank you, thank you.

–Maryanne

PS. Happy birthday, Uncle Fun Fun.

12/19–Verdict: No Real Sign of Trouble

Caitlin came back from her trip to the OR. Her surgeon and his fellow thoroughly searched for anything that could be causing the high lactate levels. The good news was that they did a deep and thorough search and everything looked good. No dead tissue to be seen. The liver is likely the problem, because it is swollen, still recovering from deep trauma and the blood pressure meds it had to process. But it’s working; it is not dead. So it looks like it needs some time to heal from the shock her body’s been through. We have to hold tight. Be patient. Remain positive.

Some good news was that her chest had stopped bleeding. The surgeon was very happy about that. Also, the left leg looks okay, like it’s not the source of the lactate trouble, but they will be keeping a close eye on everything, of course.

Friends, this is going to be a slow and atypical recovery,  and we are going to have to learn to live with that—-with uncertainty and worry and relief and more worry and hopefully, a final blast of relief.

Honestly, it all feels like a game of whack-a-mole.

But….. Dr. D’Cunha really made us feel okay tonight. As we’ve learned in Boston, there are so many doctors in a teaching hospital that you learn to be careful who you listen to. One guy said something really stupid over Caitlin today, in front of Nick. (“Might have to amputate that leg.”)

Nick dealt with him.

Dr. D’Cunha, referring to that, said, “Caitlin has two doctors—-me and her (pointing to the wonderful Lara, his right-hand fellow). “We’re the only two you listen to, and when she’s talking, she’s talking for me, okay?”

Okay! Happy to have her in his good, life-saving hands.

I also put a sign above Caitlin’s bed: Positive Talk ONLY Around Caitlin, Please !!!

Thank you, all, for all of your continued prayers and light and love. What a blessed holiday season this has been for us, and, I hope, for all of you.

FEROCIOUS POSITIVITY CONTINUES

–Maryanne, with Nick, Andrew, Jess

 

PS: In the spirit of the season, I think Caitlin would be really happy if I posted this picture of Henry for a little dramatic relief.

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Henry the darling reindeer

🎶   🎶   🎶   🎶  🎶   🎶   🎶

 

 

DECEMBER 19–Update from the Trenches

Caitlin has new working lungs, but the rest of her is struggling, and she needs all the energetic help she can get, along with everything her incredible doctors are giving her.

1. Her liver is still in tough shape, but the numbers were slightly better this morning.

2. She’s producing a lot of lactate, which generally indicates lack of tissue oxygenation, but they are not sure from where. We need to get that number down, and ensure adequate tissue oxygenation.

3. On ECMO, a patient’s pulses are checked constantly. They’ve lost detection of a pulse in her left leg/foot, which is her non-ECMO leg, but it is too risky to bring her back to the OR to try and figure out what is happening here.

Normally, transplant patients are forced out of bed, even in pain, right away, to get them moving, but that’s impossible right now. We have to take it one hour at a time.

That’s our update. We’re so thankful we are on the other side of this battle, but she’s been dropped right back into the trenches, immobile and very beaten up.

 

–Maryanne, with Nick, Andrew, Jess

DECEMBER 19–3:48am

Caitlin has come out of the OR to her room at the ICU where the team is working to keep her stable. Right now, her biggest problem is her liver. It’s not functioning and needs support. The liver can take a lot of trauma and turn around so we have to hope that’s going to happen here. We can’t have a failing liver, or she will fail.

Her chest is open and covered with a rubber membrane because of the swelling. In a few hours, they will take her back to the OR to clean this area up a bit.

She’s got a lot of swelling and bruising.

So, lungs, heart, kidneys are okay and manageable.

LIVER needs all the help it can get.

 

 

DECEMBER 19–Wee Hours

Dr. D’Cunha just came in and said she’ll be going back to the ICU in about half an hour. The bleeding has slowed down, turned to oozing. They are still concerned about the liver. She’s going back on full ECMO so that’s an issue. One thing at a time.

The small tiger is recovering in the right direction.

Dr. Jonathan D’Cunha–a man who has worked tirelessly for more than 36 hours now, to organize and execute a plan to save our daughter’s life.

 

DECEMBER 19–Still in OR

It’s past midnight, and all are still working on Caitlin, and that is still happening in the OR.  We haven’t had an update in well over two hours when one of the surgeons reported that they were trying to stop the bleeding in her chest wall. They were thinking that it was her liver causing that.

That’s all I know.

 

 

12/18–7pm

Technically, the surgery is done, but they’re having trouble getting Caitlin off the heart/lung bypass. Her body needs to start up again on its own, generate blood pressure. They’re setting up multiple dialysis machines to try and help her transition off the heart/lung support back to ECMO.

That’s all I know at the moment. Prayers.

 

NOVEMBER 19–Saturday Afternoon

evening

Last weekend, something happened that made me starkly aware of just how much someone has to lose in order for us to gain.

Our house is on a busy road, on a bad corner. Long ago we erected a large fence along the front. We sound-proofed our walls. We turned the focus of the house toward what was tranquil and pleasant: the yard and gardens, the river and trees.

Late on Saturday afternoon, Andrew was with Caitlin in Boston and I was home. I was on the phone with a friend, talking about our imminent move to Pittsburgh, and telling her how I had heard that someone at UPMC had gotten “the call” that day. As I talked, I wandered into the front of the house. Over the top of the fence that separates us from the busy road, I could see a fire truck.  I dismissed it as a false alarm—-they often happen, and in fact, a neighbor’s chimney had been pouring smoke a few hours before.

The next morning, we heard the news.  A man had taken our corner too fast. He hit a tree head-on, and died on impact. Our road had been closed for 4 hours, but because of all that insulation we put in years ago, we spent a quiet evening just a few feet away, blithely unaware.

For every lung transplant to happen, someone has to lose his or her life.  That is the stark reality of the situation and there is no avoiding it.  As I have mentioned previously, Nick’s beloved brother Willie died unexpectedly, years ago. The only positive thing that came out of that tragedy was that seven people got another chance at life. Caitlin has a friend who is seven years post-transplant. Every year, she sets a new goal for herself, to honor her donor. Saturday’s accident was a reminder that we have to try to get through this time with as much gratitude and integrity as possible.

As Caitlin says, “There is no reconciling the trade, of life for life, and no justifying it.”

accident

–Maryanne