A memorial day BBQ

I went to a BBQ this weekend at a friend’s. It was great- I needed some friend time, since Chris was away visiting his brother for the weekend and had lots of unused burgers and sausages that needed to be eaten. I debated bringing Muppet with me- I had asked my friend if I could, because it was an outdoor affair and I felt like I hadn’t spent enough time with her that day. But she can be a handful and I wasn’t sure I wanted the responsibility of watching her every move or causing trouble at someone else’s house (she is still a puppy and gets into all sorts of puppy mischief). In the end, I’m glad I did.

The BBQ was small- a couple generations- friends and some of their parents. I liked the mix of it. Muppet was a hit among the parents, which made me feel good. I needed the down time sitting in a chair with friends. Food was delish- extra so, because someone else cooked it! And a couple hours into the party, some friends came with their five week old newborn. I knew they were coming- the host had given me a heads up (which I so very appreciated) and so I tried to mentally prepare. I’ve been trying to face some situations more head on, less avoidance, though my feelings are still the same in these scenarios as they were a year ago- I can just control my emotions more. And I recognize I can’t avoid forever. I still think my feelings are valid, but now that it’s been over a year, I know that others might not understand why it hurts to see newbors or kids Mabel’s age.

It’s harder with friends and family, actually. Stranger babies are easier to see and forget, but I care about my friends and family- I care about their babies. So seeing them is actually harder, balancing my care and my sorrow.

IT was how I expected- there was no dangling the baby in front of my face, pretending that I had never buried my own baby. They were subtle, but they were also new parents, proud of the baby they had made. The older generation was smitten, practically arguing over whose turn it was to hold the baby. They asked questions to the new mom about sleeping and when she was returning to work.

I sat politely through it, my heart aching because I couldn’t help but think about how I didn’t get that with Mabel. How badly I wanted that simple interaction, those simple questions. How maddeningly unfair it was that I had a baby but didn’t get todo any of the normal baby/new mommy stuff. It felt like it never happened, which hurts even more! I wasn’t angry at the new family, I was simply jealous and reminded of the hurt. It really hurt. I felt so so cheated.

I think one friend might have recognized this a little- she pulled me into conversation when everyone else’s talk started to focus on the baby. I was so grateful for that, whether she did so knowingly or not. So we talked about non-baby things, while I reached down and petted my puppy, happy she was there with me.

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I stayed for more than enough time after, but was the first to leave, tired from a busy day and too much emotion.

Have you felt cheated lately?

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Good Bye, Paul

My friend Paul died this week. To be honest, I was not very close to Paul. I probably haven’t spoken to him in ten years, but social media has kept me connected in that voyeuristic kind of way and I have followed his story the past couple years. His death has hit me hard for such a long ago friend and it has ripped me open a bit.

I first met Paul, or Pubby, as he was introduced by his long-standing family nickname, at a summer camp I worked at during my college summers. It was an alumni family camp for my university- staffed by current college students. Job positions were competitive- hundreds applied for sixty spots and those accepted were often known for their creativity and outgoing nature. The fun from those summers spilled into the school year as well, as my new group of incredibly bonded friends reunited on campus. It was like Dirty Dancing- but wilder and more fun- skinny-dipping, costumes, secret parties. Once I became “Staph” I joined a community of welcoming, free spirited people to whom I was always bonded, for years to come. I became instant friends with Staph from years past, even if we never worked together, simply because they were part of the community. I think Paul and I overlapped one summer there- he was a few years older- but I do remember he was a bit of a legend, as many of the older Staph were. I even kissed him once at a party, because that’s the kind of place it was- kisses were given out rather freely. I often told friends that little tidbit, because I was just so proud that I once kissed someone like Paul.

When went to midwifery school, I was accepted to a good program in a city in CT, I arrived at the school with my tiny car (one of those new VW Beetles) packed with all my earthly belongings. I came site unseen. I had interviewed over the phone and had only driven through the city on the highway, remembering the reputation it had as being a dangerous place. I left my car parked on the street and walked timidly around the med school campus trying to find the dorm I would be staying in. I was terrified- I didn’t know anyone or anything about the place. I thought my car would be broken into. And as I found the dorm and was walking up the path, I spotted a familiar person sitting on the lawn outside. “Pubby!” I walked excitedly to him and was greeted with a hug. He was in med school there and having lunch with another med school classmate (also former Staph, no less). He was such a warm welcome on my eyes, and my fear of this scary city began to fade- because I knew someone, someone nice and cool and welcoming there. He made my first day ok.

Throughout those years I saw him on and off, mostly in group settings, though I remember having dinner with him and his then girlfriend, now wife, Lucy- and I always still felt that sense of awe for being friends with someone like Paul. I guess I felt like he was out of my league in a way. He never made me feel that way- it’s just that he was so smart and funny and simply just cool. He and Lucy moved away to California for residency and I stayed behind in that fearful city I grew to love. I kept tabs, like everyone does these days- through facebook mostly. That’s how I learned of his illness. He was at the end of his neurosurgery (yes, brain surgery- he was that smart) residency when he was diagnosed with lung cancer. Lung cancer. A non-smoking physician in his mid 30s. What? He was a rarity. He continued to practice and wrote a lot about his unique diagnosis and how it affected his thoughts on the world, on medicine. His words and his story were fascinating, coming at a time when I needed to hear them. I didn’t talk to Paul directly during this time- just occasional messages on his health update blog, but I followed his publications. His wife even reached out to me while I was pregnant and while I was grieving and we corresponded a bit.

When I was pregnant with Mabel, he wrote this piece, which struck me. The uncertainty of prognosis. Here’s someone like Mabel- diagnosed with a rare disease, so unlikely. No real prognosis can be given. He understands that. But look! He’s living, beating the “odds.” Paul’s diagnosis and continued life gave me hope for my baby. And then my baby died; she didn’t beat the odds, but not everyone can. But Paul was doing it. When he and his wife announced their pregnancy after Mabel died, I didn’t cringe in the way I normally did when others announced such things. I actually thought, “good for them.” Maybe a little part of me was envious because I thought Paul would live- but they understood struggle, so it was ok.

I can’t believe he’s dead. He was young and fighting a rare disease. He wrote about his struggles so prolifically, beautifully, thoughtfully- I thought perhaps writing the words themselves could somehow stave off what apparently was inevitable.

My facebook feed is filling up with photos of Paul and his articles. My first instinct is that I want to look away- it is just too sad. But I don’t. Because I know Lucy can’t look away. I couldn’t look away in the early days after Mabel’s death and I envied those who could just go about their normal lives without the heavy burden of loss. They could feel sad on their own time, while I was trapped in a prison of grief- hard enough to simply be there, but worse to be there alone. It reminds me of when people say “I can’t imagine what you’re going through…” The thing is, I can imagine it. I don’t know what she is going through- my husband has never been diagnosed with a terminal illness, never died. But I can imagine it. I can imagine the sorrow and it’s terrifying. I have actually imagined losing my husband- because that’s what the death of a loved one does- it made me worry about losing anyone close to me.

Lucy announced that Paul passed away with their baby daughter resting on his chest.   The imagine… it’s the mirror image of my loss last year. My baby resting on my chest as she ceased to breathe. Paul’s daughter resting on his chest as he ceased to breathe. So beautiful. And so so wrong too. Babies aren’t supposed to die and babies’ dads aren’t supposed to die.

I am so angry at the injustice. This post is about Paul, about Lucy, about their baby. But clearly it is about me too. I wanted to write an unselfish tribute to this man, who touched so many lives both before and after he got sick and I hope some of that came through. He wasn’t supposed to die.

I think of Lucy, and her family of three- though one is now here only in memory and I think of myself and my family of three, though one is now here only in memory. Paul will forever be tied in my mind to Mabel because their stories are so different, but also so similar. Good bye, Paul. I wish you were here.

one of his most recent pieces….

http://stanmed.stanford.edu/2015spring/before-i-go.html

An interview years ago… (scroll down to the “His Girl Lucy” section.  so worth it, I promise)

http://www.thequietquiet.com/archives/doctor_paul.html

 

Radio Silence

Well, the day came and went. It’s now 369. In a way no different from day 365 and yet in a way very different. The day was symbolic, of course, and to borrow a term from my pilot brother, I have been radio silent since as I recovered from and sorted through my emotions.

I spent the day doing not too much- sat on the couch, took Muppet to the dog park and did some light cleaning. I took out Mabel’s box- or boxes, the bereavement box we got sent home from the hospital with, the box of pregnancy related things I had kept, the box of cards and what nots I had saved. I got a little teary eyed looking at her outfit- the pair of pants she didn’t even wear because she was too small. They had pockets.  FullSizeRender_2

Her hat still had strands of blond hair in it- which made me smile because the lock they cut for keepsake looks brown. I opened up the tiny blood pressure cuff and held it to my face- I swear I could just catch the scent of her.

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I packed it all back up and organized it the way I want, keeping her bereavement box in our bedroom and putting some of the other stuff away in a closet.

We visited her grave and brought a balloon- Chris unknowingly bought a Hello Kitty one, but we figured she’d like it.  By the time we got to the cemetery, one of the letters fell off and so it read “Happy Birthday abel.”

The evening we had a few friends over- which turned into a few more- and had dinner and cake.

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Singing Happy Birthday to my dead daughter actually didn’t feel so good, but it seemed like the logical thing to do. We watched her video and my friends got teary eyed, while mine remained dry. I realized I don’t like to cry real tears in front of people. I was reminded of how in the immediate days after her death, with family filling the house, I would sneak up to my room to cry unwitnessed.

My tears came the night before, triggered into a meltdown when one of my midwives messaged me about how on the eve of her kids’ birthdays she often thinks about what she had been doing way back when, and how hard it must be for me to do that. The message was sweet and needed, opening up the flood gates. I didn’t have a good cry again until I crawled into bed on Sunday, crying about some of the disappointments from the day- the people I didn’t hear from. Crying about how my life and relationships had changed so much in ways that I felt I so sad about. Crying about how my daughter was dead-how I have a dead child.

I’ve spent the next few days sorting through it all- trying to focus on all the kindnesses, the so many kindnesses that came with the day and not be consumed by the sadness of disappointments (some of which I’ve since decided were justified, some of which were not).

So in that vein, I want to share with you all some of the many Random Acts of Kindness. There are too many to even list, many I don’t even know about and not enough words to thank those who have done them.

  • Donations to children’s museums- in CT, in RI
  • Cupcakes to my care team- the practice I work for, the midwives who cared for me, the MFM docs who cared for me, Labor and Birth, the NICU
  • "we wanted to thank those who so beautifully cared for her and for her family while she was here (the amazing midwives of [the group that cared for her], everyone on Labor & Birth, the NICU staff, the MFMs who were involved and the group Meg works with.) They will be eating birthday Karate Carrot cupcakes."

    “we wanted to thank those who so beautifully cared for her and for her family while she was here (the amazing midwives of [the group that cared for her], everyone on Labor & Birth, the NICU staff, the MFMs who were involved and the group Meg works with.) They will be eating birthday Karate Carrot cupcakes.”

  • Flowers at Mabel’s grave
  • play dough too!

    play dough too!

  • Carrot soup
  • Books that showed up as gifts (including the one on the right that came from unknown sender)
  • did any of you send the Help Thanks Wow book?  it came without a sender...

    did any of you send the Help Thanks Wow book? it came without a sender…

  • Gifts for children’s hospital in Boston and Indianapolis
  • Shoveling neighbors snow in Massachusetts and Connecticut
  • cards! so many cards!
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  • Donation to help migrant workers and their families in Florida
  • Diapers and kids treats donated to a homeless family in North Carolina
  • Donation to a Down Syndrome organization in Virginia
  • A children’s book donated to my town’s library
  • Letting people go ahead in the airport line
  • Buying ice cream for the kids at the next table
  • Dinner buying for a cancer survivor
  • Baking carrot cake for a friend
  • Coffee bought for people in line behind the buyers
  • A big tip left for waitress, a big tip left for a bartender who is fostering a baby with Down Syndrome born addicted to heroin
  • A donation given to a homeless man in a wheelchair
  • A donation to the Perinatal Mental Health task force in LA
  • Water bottles given out to strangers in LA on a very hot day (hard to conceive in chilly new England)
  • A carrot hat given to me
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  • Presents donated to a local shelter including a carrot stuffy
  • Donation to a high school lunar rover team in CT
  • Handmade carrot wreath for my door
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  • Letters from Thai high school students
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Sick days

Sometimes I just wish I could take a sick day.

On a day when I’m feeling sad- or want to feel sad- when the idea of facing pregnant woman after pregnant woman just feels like too much, overwhelming, I wish I could call in and take a mental health day. Spend the day between the couch and the bed, looking at photos, distracting with bad tv.

In medicine, providers rarely take sick days. I’ve had colleagues work with IVs hidden under their sleeves rather than call in sick, co-workers who see one last patient before they themselves go to the emergency room. I was feeling really bad one day, a few years back (I rarely get sick). I didn’t eat anything but crackers for lunch, which was highly unusual for me. By the end of the afternoon I was severely nauseous and struggling through each patient. With two more to go, I quietly vomited in my office trashcan before heading into the next room. My sonographer caught me afterwards saying she had a patient freaking out over her ultrasound and could I talk to her. I could not say no. I stood patiently in the room as she cried over a minor finding on the sonogram (which in the end turned out to be insignificant). After consoling her best I could I left the room to finish vomiting.

If I can’t even call in sick for that, how can I justify taking a mental health day?

Of course, I could simply make the call. But the twenty-five patients on my schedule that day would have to be moved- those who need to be seen would be smooshed into my coworkers already busy days and others would be overbooked with me when I returned. So calling in sick not only burdens my colleagues, but also makes my following days in the office that much worse. I often felt like this in high school, rarely staying home because I wouldn’t want to miss the classes and have my return be a mess. It was just easier to suffer through.

So that’s what I do now when I’m having a bad day. Suffer though. I also have Wednesdays off which helps- knowing I can always use that day for my grief. I just have to postpone all my feelings. It’s hard, though, scheduling my sorrow. Sometimes I wish I could simply take a sick day.

Do you take mental health days? How do you spend them?

Another baby’s funeral

When I entered the church I was hit with the scent of my childhood Sunday mornings. The familiar incense, only found in catholic churches, surrounded me. It was a small building, about twelve rows of wooden benches lined each side of a center aisle leading to a marble altar placed centrally on the pulpit. I slipped into a pew a few rows from the back, nearest the exit so that I could escape easily if I needed to. The last time I had been in a church was for a friend’s wedding; this time I was surrounded by strangers, dressed in dark and demure clothing, appropriate for a memorial mass for a baby.

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I was worried about how I would feel going to the service. Would I cry? I thought as I drove to the church. Would I seem emotionless and heartless? I found those original thoughts laughable as tears stung my eyes, the moment the first note of the organ music began. Now I worried I would seem overly dramatic as the tears continued to flow, before any words were even said. I’m not a quiet crier, with a snotty nose that needs constant blowing. I paced my breathing trying to keep my emotion discreet, telling myself I could always step out to the foyer if I needed to.

I pictured myself grabbing my purse and finding refuge in the entryway. The woman who had greeted me on the way in would look up and ask what was wrong. I would apologize for my theatrics, saying how I too had lost a baby and this was simply bringing up too much emotion.

I did not escape to the foyer. Instead I looked up and saw a few rows ahead of me a woman, about fifteen years my senior, holding a tissue to her face. She was crying almost as hard as I was. Seeing this woman unabashedly letting her tears flow reminded me that I was at a funeral! It’s okay to be sad! A baby died! Having a partner in overt sadness gave me the strength I needed to be present through the rest of the mass. I’m unsure who this woman was- I imagined her as an aunt, maybe one without kids of her own, who treated the bereaved mom like she was her own child. Or perhaps she was simply someone who felt deeply, had a particularly strong sense of empathy. She did me a favor that day: her tears gave me permission to shed my own openly.

I listened to the familiar chants and prayers of a Catholic mass, cautiously looking around, eying those surrounding me. Up ahead was a set of three young women- college friends of the mom, I imagined. They were dressed nicely in black dresses with colorful sweaters, a combination that seemed appropriate for a dark service on a bright sunny day. Their hair was carefully arranged and makeup done nicely- their attention to their appearance made me think how much they respected and cared for the parents. The woman in the pew ahead of me had placed her purse next to her on the bench. It sat with the top open, exposing its contents. My eyes were drawn to the keys, which had a small key chain with the faded school photo of a nine year-old girl. I became fixated on that key chain photo, thinking how the bereaved mom would not have one of those for her baby, how I would not have one of those for Mabel.

I was at that service to remember the little girl who entered this world silently a few days before, but I couldn’t be there without thinking of Mabel too. Had I remained loyal to the Catholic faith, this is the kind of service we would have had for my baby. I could see the mom in the front pew and watched her emotions through the mass. I was transported back to the first days after Mabel died- the anticipation of her wake and burial, the family surrounding me at all hours, the engorged breasts announcing to the world that there had been a baby. It was hard.

The priest gave a nice sermon about death and mercy- explaining that we were not asking for mercy in the forgiveness of sins sense for the deceased, but instead we were asking for mercy for ourselves, asking for compassion as we mourned what we lost.

After the mass was over the crowd, which was sizeable for a weekday morning, slowly filed out behind the grieving family, ending in a receiving line. As I waited my turn, I watched a few women who were dressed in scrubs. The bereaved mom was a clinician in a local medical clinic and I could tell these were women who worked with her. It warmed my heart to see them present and wiping away tears. I wanted to approach them and tell them a tiny bit of my story- that I’m a provider who lost a baby too and that returning to work was hard. I wanted to tell them that I thought it was so wonderful they were here and to please, please continue to watch out for the mom. Don’t let her return to work to soon. And when she’s ready, protect her. She’ll look better than she feels. Even months out, her baby will be on her mind and she’ll face constant reminders with her patients. Don’t forget. I played these words in my mind, but never got the nerve to say something. I didn’t want to bring my story into her day. But I know that her coworkers were there for her that day and by that alone, I know they’ll be there for her later on too.

While waiting in line, a woman asked if I were a friend of the mom’s or the dad’s. I said I knew the mom. She introduced herself as the mom’s aunt and asked how I knew the mom. This was a bit awkward for me as I met the mom through this blog and to explain it felt a little clumsy.

“We’re sort of internet friends,” I said inelegantly. “I lost a baby too and I write a blog about it. We found each other that way. I’m a nurse midwife, so we’re both in the field.” My voice was shaky, betraying the nervousness I felt bringing my baby’s story into another baby’s special day.

“I’m a nurse too,” she said and noted how she knew the baby’s whole story from the beginning.   We nodded at each other, sharing the understanding that fellow nurses have.

When I finally made it to the receiving line, I met the dad, who had his daughter’s little hat tucked into his pocket, creating a very special striped accent to his dark suit. The mom and I exchanged hugs and all I could think about was her poor chest- all that hugging when milk is trying to come in. At the end of the line I spoke with her mom. My standard introduction was “Hi, I’m Meghan. I’m a new friend of the mom’s. I’m so sorry for your loss.”

Her mom grabbed me by the arms and said, “Meghan? The blog Meghan?”

I smiled and nodded.

“Oh I am so glad to meet you. And I’m so sorry about your loss too. I saw the page you wrote about Clara, it was lovely.” I suggested she look at the comments because there was a whole lot of love coming to her family from all over. “I am just so happy you guys have found each other- wait, no. I mean, I’m so sorry you both lost your babies, but…”

And I interrupted her, reassuring “Yes, me too.” There should be a word for the weird sense of camaraderie the babylost have- we are so happy to have each other, but wish we never knew one another, that none of us ever gained membership to this awful and special club, that our babies had lived.

I left the church feeling strangely good. It was a weird day- it seemed too sunny and warm for a funeral mass. Perhaps I was colored by my own story, having buried Mabel in the cold snow, but it just seemed so surreal that I spent the past hour sobbing in the dim church only to leave with the bright sun warming my bare arms through the bright green leaves on the trees.

Have you been to a funeral since your lost? What was it like for you?

Welcome to Holland

In 1987 Emily Perl Kingsley wrote an essay about raising a child with a disability.  The story goes that parents get on a plane bound for Italy- their dream vacation.  When they land, they disembark into Holland.  They are disappointed that this is not what they signed up for and mourn the loss of what they thought was the ideal vacation.  After time, they get to know Holland and see the beautiful history and colorful tulips and finally recognize that Holland is beautiful and rich in its own way.  They are happy they landed in Holland and wouldn’t have it any other way.

I signed up for a trip to Italy and got the diversion notice to Holland quite early in my trip.  I said, ok, let’s go to Holland.  Then my plane was diverted to Siberia.  Ok, I said, let’s go to Siberia, as long as we land safely.

My plane crashed in the ocean.  I am sinking, drowning, awaiting rescue.

I see plane after plane fly above me, bound for Italy, bound for Holland, bound for Siberia.

They will land safely.  Some people look out the window and see me flailing.  They recognize how fortunate they are to get to their destination.  Some wish they could help in someway, but are lost in the how.  Some people fly cluelessly above, having no idea that planes get diverted or crash.  Some people look down and see me, patting their bellies and thinking smugly, too bad for her and then go back to planning their vacation, making reckless decisions like not even wearing their seatbelt.

A few other survivors bob along with me in the ocean, but they have floated too far for me to even call out to them.  I float alone, my tears spilling in to a sea of sorrow that will soon swallow me up whole.  Where is my rescue?