My three P’s of grief survival

This week I had the honor of being the guest speaker at a local hospital’s night of remembrance- an event they put on for those who lost babies. It was a beautiful ceremony, with music, poetry and a touching sand ceremony. Here is my speech:

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Meghanol is Program Director for Hope After Loss, the Connecticut based non profit that supports the pregnancy and infant loss community. She is also a practicing nurse midwife in the greater New Haven area. But today she is here as Mabel’s mom.

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I was 27 weeks pregnant with my first child when the doctors told me my baby was going to die. I was thrown into a state of shock and disbelief. I had already had my share of grieving this pregnancy- I survived a threatened miscarriage early on and at 13 weeks an unexpected Down Syndrome diagnosis caused me to grieve the loss of the child I thought I would have and work on accepting the child I was given.

And then at 27 weeks, my baby had no fluid, meaning her kidneys were damaged and lungs would be severely underdeveloped. I was told my baby would be unlikely to survive after birth, let alone pregnancy. Two months later, I gave birth to my daughter, Mabel, a 5 pound 5 ounce feisty little girl, who gifted us six sweet hours with her.
Though I can speak her story now, with a smile of pride, I struggled hard with sorrow and grief from the moment we learned she would be very sick. I was constantly looking for answers on how to do this- how to simply go on. I eventually found my way, and now two and half years later, I want to share three things I have learned help me with my grief. These are my three “P”s of grief survival.

Patience.

Practicing gratitude.

Perspective.

 

Patience

“Do you have kids?” was a question I dreaded from the time I learned my daughter would not survive. I tried out many different responses and I had to be PATIENT with myself as I learned which ones worked.

None living.

I had a daughter.

I had a daughter who died after birth.

Some answers produced a look of horror on the askers face, others were too subtle, resulting in awkward follow up questions and others still shut the conversation down completely.

Finally I settled on:

“I had a daughter but she died.” And following the requisite “I’m so sorry” I learned to say. “Thank you. And thank you for asking. I really like talking about her.”

This response took years of trial and error. Be PATIENT, Meghan. I had to figure out what felt best for me- what made me feel like I was being honest, but also protecting my daughter’s memory and keeping the conversation alive. It was arduous work at times. And just like with my grief, I had to be PATIENT with myself. Sometimes my responses were clumsy and ugly, leaving everyone feeling awkward. But with time I got better. You too will learn how and when and if you share your children with the outside world. The answer might change over time or with your audience. Just be PATIENT.

Practicing Gratitude

Not long after learning about Mabel’s prognosis, I was struck by a quote I saw floating around on facebook.

“The things you take for granted, someone else is praying for.”

I had been wallowing in a state of “life is unfair” and couldn’t figure out how to move forward. This phrase gave me some guidance. Instead of focusing on the things others took for granted- healthy pregnancies, being among pregnant women without jealousy, assumption that they would be taking a baby home and I tried to remind myself of the things I was GRATEFUL for- the opportunity to simply be pregnant, my own good health, an amazing OB team, an active baby. It was my first shot at the PRACTICE OF GRATITUDE during an extremely hard time. It didn’t take away the hurt of carrying a dying child, but it helped me find something to cling to while I felt like I was drowning in grief.

Later, after my daughter died, when the sadness started getting overwhelming, I participated in a challenge, forcing myself to find 3 good things every day and sharing my GRATITUDE about them on facebook.

I was even able to take other people’s comments and reframe them under that GRATITUDE lens. Shortly after Mabel died, a very good friend told me of his grandmother’s stillbirth experience- how the baby was rushed away before she could even see him. “At least you got to hold her,” he said to me meant as words of comfort. This was the first of many “at leasts” I heard. It took time, but I was eventually able to reframe such comments. “I’m GRATEFUL you got to hold her,” was what he meant. And I am GRATEFUL.

Perspective

After my daughter died, I felt like there were pregnant women and babies everywhere. I was in Ikea, trying my hardest to be a normal person, when I saw a woman I knew. She had a baby in a carrier on her chest and held a toddler by the hand. It hurt to see someone with everything I ever wanted right in front of me and I felt mad and jealous that other people have it so easy. I could only see her from the PERSPECTIVE of a baby loss mom.

A few months later, I attended my first walk to remember with Hope After Loss. As I worked my way through the crowd, I saw that same woman with her two young children. We were in the same club. I was there to remember my Mabel, and she was there to remember her firstborn, a daughter she lost to stillbirth. I gained greater PERSPECTIVE in that moment. Just like me, many others carry invisible burdens.

So my dear friends, I present to you what I have learned. Be PATIENT with yourself as you learn how to navigate your new normal. The path is not easy, nor one would have chosen, but it belongs to you and your baby. PRACTICE GRATITUDE- of the little things and of the great things. Find what’s good, and it will be a lifeline in your sorrow. Gain PERSPECTIVE. Remember, you are the one in four. Though you are now a member of a club your never wanted to be in, you’ll find the fellow baby loss, once they reveal themselves, among the most compassionate and supportive people you have ever met.

There is nothing that will take away the pain of losing a baby, nothing that will fix your grief… and there shouldn’t be. But there are ways to make the path we walk a little gentler. It is not moving on, leaving grief behind. It is moving forward, learning how to walk side by side with grief. Because we can never forget our babies. They are etched on our hearts, burned in our memory, our constant companions- silent but speaking volumes.

Mattresses

I was listening to a podcast while I walked the dog this morning (yes, I know, I’m a nerd and I own it).  The podcast was about mattresses… why there are so many mattress stores and why they are always clustered together.  (#nerdentertainment) At one point it described a mattress ad explaining how buying the wrong mattress can be an 8 year mistake because it’s recommended you replace your mattress every 8 years (by whom? I don’t know).  Made me think about when we bought our mattress.

I remember the day in early december.  Chris and I were at the mattress store buying two for a trundle bed we purchased for the nursery.  The nursery seemed too big for just one baby so we figured a trundle for guests (and kids when older) would fill the space nicely.  I was 26 weeks pregnant, though it might have been hard to tell behind a big winter coat.  After picking out the mattresses we came for, Chris asked me if I wanted to test out some king-sized ones.  He knew I had been wanting one for a long time and now we had the space for it.  I jumped at the chance.  We literally lay on one that was too hard, then too soft and the middle one was just right. Our family was growing and I thought it was the perfect chance to expand our bed. When the salesman rung us up, we added a bed frame and mattress cover. He said the cover protects against all things- spills included.  “What about water-breaking” I half-joked.

A week later, I learned just how not-funny my line had been.  A week later, we learned my water would likely never break, or at least I wouldn’t know when it did because there was such little fluid around my baby.  A week later we were in the hospital, on a snowy weekend, learning the sad fate of our baby.  A week later we had to call on some friends to go snowblow our driveway and wait for the delivery guys to come deliver the mattress meant for a grwoing family.  A week later I arrived home to that mattress, the one bought for Mabel that she didn’t get to use.

The podcast made me realize I will easily know when my 8 years are up for my mattress.  The mattress is as old as Mabel would have been.

Mother’s Day, take two

A long overdue post, but one still on my mind.

This Mother’s Day was different- gentler perhaps. I won’t deny that the growing life inside me has helped ease it, but truthfully, this Mother’s Day was still all about Mabel in my mind. She is the only child I have born, the one that has concretely, if not silently, made me a mother. Time too has eased the pain. Last year, Mother’s Day was still so fresh, less than three months after Mabel’s death, I wanted the freedom to sit and sulk all day. I was so afraid it would hurt. And last year it did hurt, but there was also a lot of beauty in it. I received a lot of love from so many people that the build up to the day was worse than the actual day itself.

This year, perhaps because of such a surprisingly good day last year, there was less build up. I panicked a bit thinking that no one would quite remember, but also knew it wouldn’t be as bad as if they hadn’t remembered the first year. My standing as a mother was no longer debatable in my mind. I think I was worried that Chris would forget.

Hah! I woke to him calling my name. At first I was a little annoyed- why was he waking me up on a day to sleep in? “What?” I croaked groggily, not hiding my grumpiness. I rolled over to see that he placed a tray next to me- breakfast in bed!

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And later he surprised me with an even better gift- he hired our wedding photographer to come take photos during our shower the next week, with a quick sneak away maternity photo shoot.

The gift might seem all about the baby I’m currently carrying, but it was all about Mabel, really. When we learned she had Down Syndrome, I was stricken by the fear that I would lose her through miscarriage or stillbirth, a 12-20% chance. I was terrified that photos of me pregnant would cause me pain later on. The fear deepened when we learned of her likely life limiting birth defects. I rarely let myself in front of a camera. It wasn’t until I had her and then lost her, that I realized how much I valued the few photos that showed my belly pregnant with Mabel. Those photos were part of the proof that she existed. That she was here. So a maternity photo shoot- something I might have thought was too cheesy for my liking otherwise- was actually the most thoughtful gift and tribute to Mabel. That man, my husband. ❤

I spent the day a bit like any other- happy to have a free day to clean, run errands and get my life together. An important part of the day was visiting Mabel- that little sweet thing that gave the day meaning. When we arrived at her tombstone, I was surprised to see that someone had planted some flowers for her.

Mabel's flowers

Mabel’s flowers

Oddly, I think it was a random act of kindness. There were some freshly planted flowers of the same variety and color along a grave one row up.

The grave with the same flowers

The grave with the same flowers

Unless someone I know takes claim for such a lovely deed, I envision the caregiver of that other adorned grave, looking over at Mabel’s stone, reading her name, her solitary date and seeing the engraving of her tiny footprints and deciding that she too needed a little special gift on that day. Maybe they even thought of the mother of that baby and how hard Mother’s Day must be for any woman who has had to bury her child.

How was this Mother’s Day for you?

March of Dimes

I was a bit nervous as I approached the park. Chris was called into work last minute on a Sunday, so it was just me and Muppet. I had never done the March of Dimes before. Strange, I suppose, when you think of my line of work. One would think that I might be a yearly walker, especially because the labor and birth unit at my hospital puts together a team annually. Honestly I probably wouldn’t have gone this year either, with my walk attention and fundraising efforts elsewhere, but the L&B team decided to walk this year in memory of Mabel. I was so touched. They had shirts made- orange for my karate carrot- with her name and a little carrot on the back.

Even though it was an honor to have my daughter the focus of their team efforts, I was still nervous because it was the March of Dimes. My first thought is of all the preemies who make it out of the NICU- the success stories.   The “sung” heroes- the poster children for why giving to the March of Dimes matters. See what your money can do, it saved this baby’s life. My baby was one of the unsung heroes- one who never saw outside the wires and beeping of a NICU room. But she was her own success. We knew she might not (likely not) graduate from the NICU, but we got what we had hoped for. When we were told our baby had a likely life limiting diagnosis, my hopes for her changed. Once hoping she would simply be a high functioning child with Down Syndrome who needed no surgery, the preterm oligohydramnios diagnosis changed my hopes- I hoped that she would survive pregnancy so I could meet her in person; I hoped she wouldn’t suffer; I hoped her case would be clear, so we wouldn’t have to make any extremely difficult decisions; I hoped she wouldn’t die alone. My hopes were met- she lived, which was her own making! Mabel’s NICU team helped with the other hopes- giving her pain medication so she wouldn’t suffer and keeping us informed about her prognosis so we could make those “simple” difficult decisions. The NICU couldn’t save her- her body wasn’t meant for this world with its current technology- but it gave us control, comfort and memories. Though Mabel didn’t survive, she is still a poster child for the NICU- exactly why people should donate to the March of Dimes, so that some day, a baby like Mabel would have a chance.

Did any of you participate in the March of Dimes? Or other walks/fundraisers/awareness events?

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The due date revisited…

One year ago today was Mabel’s due date. Honestly I might not have even remembered it had a friend not mentioned it yesterday. A year ago this day meant so much more. I had already birthed Mabel, but the passing of the day felt like the passing of the time I was supposed to be pregnant. One of the many concrete days that marked the end, reminding me I was not longer pregnant with my baby… the one that died. I knew I would not see March 14 while pregnant. The risk of stillbirth with Down Syndrome gave me the option for early induction, which I would have gladly taken. Then the oligohydramnios diagnosis moved the induction date even earlier- to 37 weeks. Only in my last week of pregnancy di we witch it back to 39 weeks. Mabel has us all humbled, thinking we could actually predict the day she came, when she decided to make her entrance into this world at 36 weeks. So all the planning, the dates, ended up meaning so little.

Last year I was sad on this day. Today I am emotionless. I didn’t even remember. Got me thinking…

Did I not remember the day because now her actual birthday means so much more? Did I not remember the day because I am moving forward (not moving on… I don’t like that term)?   Is this progress? Do I even try to make meaning of my forgetfulness?

Parallels between the babyloss and Down Syndrome Communities

This was her first visit in the office since we converted to electronic medical records. Even though I always review a patients medical history when they come in, I pay extra attention when it’s someone’s first visit since the transition. As I went over her family history I saw listed in the “son- Down Syndrome.” I don’t think I knew this about her. Perhaps I did but it hadn’t meant anything particularly special at the time.

She admitted it had been a long time since she had been in for an exam- over two years and I gave my typical reassurance- “it’s ok, you’re hear now. We’ll get you all caught up.” Before we started the exam, she asked me “what’s new with you?”

“A lot actually…”

“Did I hear you had a baby?”

“Yes. And actually she had Down Syndrome.” I saw her face perk up a bit. “but she died shortly after birth.”

“Oh, I’m so sorry, “ she said. Her words were simple and genuine. I went on to tell her about how we knew our child would have Down Syndrome and we chose to continue the pregnancy. I told her about the low fluid and what it meant for the baby’s kidneys and lungs, how the prognosis was so uncertain.

“We had no idea if she would live or die…”

“Oh my, you have been through so much! What a year that must have been!” I really appreciated her words, because I felt like I had been through so much- the uncertainty, the hope, the letdown and the grief that followed. Sometimes I wonder how I got through it all.

As I went through her exam, we continued to talk. I asked her about her son and learned he was 16 years old and low functioning- non-verbal, but a very sweet boy. She told me stories of their trip to Disney World and his school experience. She told me about her pregnancy with him and the surprise birth diagnosis.

“It’s such a treat to talk about him. Usually when people hear he has Down Syndrome, they think of it as a bad thing and avoid the topic.”

I marveled at the parallel. We continued to talk about the similarities between raising a child with Down Syndrome and being a babyloss mom. The avoidance of the topic, the unhelpful platitudes we receive, the entrance into a very exclusive club you never wanted to be in.   The visit went well beyond the 15 minute slot allotted, but it was worth it. She needed it- and so did I.

At the end of the visit, she asked after another midwife who used to work in the practice. I told her about the new job she had, how well she’s doing and how we still sometimes see each other. She had seen that midwife for years before I inherited her as a patient when my colleague left. “I used to look forward to coming for my annuals, because enjoyed the time I spent with my old midwife so much,” she told me. “But now I get to look forward to seeing you.”

Have you found someone in a different community outside the babyloss world who has similar struggles?

Will my baby live?

When I got that news that Mabel had low fluid, I truly understood that the prognosis was bad, but it was hard to really wrap my head around the idea that she might actually die. Part of the difficulty was that no one would actually say she was going to die. Obstetrics would hint, very strongly at it, but couldn’t tell me with certainty. Pediatric specialists wouldn’t comment at all- they all simply said we’d have to see when she came out.

At one point we met with a neonatologist that was finally a bit helpful in that respect. I had been getting weekly ultrasounds for several weeks when we saw him- had had one that day even, which at that point had shown anhydramnios, or no fluid at all. When he heard that, his expression became very serious. He too couldn’t tell us for sure our baby would die, but he was able to get across the point that he was not optimistic for our child. It’s possible he told me nothing new, and after several weeks I was finally able to really hear someone tell me bad news. But I think it was also helpful that he dealt with babies like Mabel. Before him, those giving me the dire prognosis were in OB- they didn’t deal with the baby when she came out, so I didn’t give them as much credit as I should have.

Despite my better understanding of her poor chances, I still remained hopeful. Perhaps it would have been easier if someone could have just told me she would die- her condition was incompatible with life. Then I might have reframed my pregnancy differently.

Later, when I was hospitalized, my midwives came by daily to check in on me. I had many visitors, and everyone tried to remain upbeat. I was pretty positive myself, finally feeling “safe” on continuous monitoring. But I had my moments too- I often just wished I knew what was going to happen (so I could prepare- I thought.)

One day when one of my midwives was visiting, we were having a more serious conversation- about the what ifs. Of all my care team, I talked to her most about the what ifs- what if my baby died? How do I be a midwife? How do I answer when asked if I have kids? She had given me the book “An Exact Replica of a Figment of my Imagination” that just felt so powerful and helpful at the time. For some reason, I could talk to her most easily about the hard stuff. Maybe because others would say- “don’t think like that!” or “no! Miracles happen! Babies surprise us!” or “you don’t know what’s going to happen, why plan for the worst?” But she wouldn’t. I suppose she was the perfect example of empathy. She would stop and really think about what it must be like to be facing such an unknown reality. On one of our visits in the hospital, I asked her “Can I ask you something honestly? Do you think my baby is going to live?”

“No,” she said softly.

And at that time, it was helpful. Partly because I had been asking- not simply being told. Partly because it was her- she wasn’t trying to get me to understand, she was simply imagining it for herself.

I recently saw her for a concern of mine- one that got me super nervous.   Leading up to my appointment I was calm, pushing away bad thoughts- but once I got there, I couldn’t hold back the tears. At the end of the visit, one she basically spent reassuring me, I stopped her and said,

“When I was pregnant with Mabel, I asked you if you thought she would live. You were honest with me. That was really important to me. Today, what do you think- will I be ok??”

“Yes,” she said softly, in that same tone of voice she used with Mabel.

And I believe her.

Do you have someone you trust to tell you the truth? Someone you can hear the truth from? Is there someone you look to for reassurance that everything will be ok?