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.

She’ll remember

Some patients are difficult. Some take a long time. When I saw on my schedule that I had a patient coming in who “needs extra time” and had an extra slot blocked off for her, my stomach dropped a bit- it would make for a long afternoon. Until I read the name of the patient and realized who it was. Yes, she needed extra time. Yes, it could be difficult to care for her. But she was so pleasant- a pleasure actually.

Her chart labeled her simply as “learning disabled.” I have been taking care of her for years, having inherited her when her previous midwife left our practice.   My guess is she is on the autism spectrum somewhere, though I am not a psychiatric provider. She also has some compulsions, leaving the house wearing no less than ten layers of clothes. The extra time needed for her was merely so she could dress and undress.

She spoke in in a loud monotone voice, but was friendly. She complimented me, and just about everyone else she interacted with, on at least several pieces of clothing I was wearing.

“That’s a nice sweater and necklace and shoes and hairstyle. Your hair is so long. It wasn’t that long before.”

“No I think it’s the longest I’ve ever had it.”

She has an astoundingly accurate memory- for people and dates especially. She could tell me the exact date of each of her mammograms over the past year. She quoted from a letter she received from her previous midwife informing her of the death of a mutual friend of theirs.

“I didn’t see you last year. I saw Margaret. You were on maternity leave,” she started. I could see where this was going. “Did you have a boy or a girl?”

“A girl,” I answered with a smile. Isn’t it nice when people ask about our babies?

“That’s nice. When was she born?”

“February 15.”

“Oh, the day after Valentine’s day. That’s nice.”

And then the visit somehow went one. I asked my typical calcium intake and exercise questions. We discussed her weight. I asked how retirement was. And all the while I thought about her amazing memory. I would have told her the truth if she asked the right question, but it didn’t come up. I felt like she would ask about my baby in years to come, because she would remember. So at the end of the visit I said to her,

“I have to tell you something. You asked about my baby earlier. Well, I wanted you to know that she died shortly after birth.”

“Oh, that’s so sad,” she said without hesitating. “What happened?”

“Well, she her lungs were too small and she couldn’t breathe.”

“Why were her lungs small?”

“So she had some birth defects, because she had Down Syndrome. Sometimes babies with Down Syndrome had issues like hers.”

“I know some people with Down Syndrome. That’s sad about your baby.”

“Thank you. And thank you for asking about her.”

I wanted her to know, because she’ll remember. She’ll remember Mabel for years and years.

Is there someone you know that will remember your baby always?

Mabel’s First Birthday

One year ago today was the saddest day of my life. The day also brought joy- the birth of my first child, long awaited and very wanted- but that joy was overshadowed in the hours following her birth. I went from utter amazement that I had a baby and despite the odds stacked against her, she cried. She might live, I thought. My excitement lasted minutes, until Chris updated me from the NICU. Her lungs were too small. She would die. As I raced to wrap my mind around this outcome, known as a possibility for months, her condition deteriorated in the hours that lay ahead. The days I thought I had with her melted into just a few hours as the vent and oxygen failed to sustain her tiny body. We took away that pain, removing her from life support, after just six and a half hours of life. The warm solid baby that lay on my chest became heavy and cool, her skin turning from a light pink to a mottled purple, her lips deepening to a dark red. I held her until I could hold her no more and gave her up for the final time.

One year ago today my daughter was born. Today is her birthday. But today is her death day.

In my early days of grief, I envisioned such a different day. I would plan a birthday party- a large, kiddie birthday party, with hats, and cake and balloons. I would invite everyone who I would have had she lived and ask them to bring books to donate to a needy school or library in the area. I would write Mabel’s name in each of the books, so she would live on when others read her name. It would be a celebration of her life. I was inspired reading about another mother’s celebration of her baby taken too soon.

Holding that birthday party is part of that ideal grieving woman I often aspire to be, but feel like I fall so short of.

But I can’t have that birthday part for Mabel. I’m just too sad.

I’m sad that it’s even a decision I have to make- how to celebrate my dead baby’s birthday and death day. I’m sad that my baby died. I’m sad she suffered. I’m sad that I have suffered. I’m sad that I’m not where I thought I’d be in my grief at one year. I’m sad that she’s not here. I’m just so so sad.

No big party today for Mabel. No party hats. No book collection.

Today I plan to hide under the covers. I know I have so many people in my life who are supportive and thoughtful (many of whom have already graciously reached out) and their support is welcome. Today, though, I plan to turn off my phone and hide from social media and just be sad. It’s too overwhelming to be gracious and sad at the same time on this day.

As the day approached and I recognized I wouldn’t be making my dream birthday party happen for her, I made an alternative plan. I couldn’t face an in person celebration, but I wanted her recognized so I invited friends and families to a virtual one. I sent these invites out earlier in the week:

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In memory of our daughter on her first birthday we invite you to join us in doing a Random Act of Kindness.  Enclosed you’ll find a small notecard that you can leave behind, if you choose, when doing your Act of Kindness.

We would love to know what you do in memory of Mabel.  Please feel free to email us or post on social media.

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Feel free to join us in Mabel’ virtual birthday party. Or you could simply learn more about her here:

Happy Birthday, baby. I love you. I miss you. I wish you were here.

Sometimes knowledge is power and sometimes knowledge is pain

I have a friend who is a doctor and she shares snippets of her daily life- the trials and tribulations of a resident physician, her patients and the lessons about life she learns. Some stories are beautiful and uplifting. Some make me cry. Some make me cringe. All are insightful.

Recently she wrote of a meeting of providers- discussing their patients’ cases and one of them, an oncologist was distracted because he had recently learned of his mother’s breast cancer. He had trouble focusing on the meeting because he knew better than anyone what the diagnosis meant for his mother and his family.

“Because sometimes knowledge is power and sometimes knowledge is pain.”

This was me, my entire pregnancy with Mabel. I had a week before my first ultrasound where I assumed everything would be okay. Until there was no heartbeat and we thought I had a blighted ovum. Seeing a heartbeat a week later, confirmed a viable pregnancy but I spent the rest of the first trimester knowing what it felt like to miscarry and worried I’d be feeling that way again. Though I told my family I was pregnant before my genetic testing, I asked them not to share the news until we got the results, because even though I had no risk factors, I knew it could still happen to me. When I learned Mabel had Down Syndrome, I decided to accept the diagnosis, but it wasn’t simply recognizing I’d be raising a child with special needs. It was also recognizing that I might not be- I was all too familiar with the risk of miscarriage and stillbirth with the diagnosis (ironically, I wasn’t thinking about neonatal loss). When we were told her kidneys weren’t working, she had no fluid and if she were even to be born alive, her lungs would likely be too small to sustain her life, I had some hope, because what mother doesn’t? But I also knew. I’ve told people myself when there is no fluid at early gestation that their baby will die. I knew.

Yes, sometimes knowledge is power. I was able to research and make my own educated and informed decisions about my body and my baby. But knowledge was also pain for me. I never enjoyed my pregnancy like I should have, like I wished I did; it was too tainted with worry.

I’m sure those of you out there who have had a pregnancy after loss also know that knowledge is pain. There are some of you who may have learned that lesson with your first pregnancy, like me.

Is knowledge power? Is knowledge pain? What is your experience?

Storytelling regret

I told Mabel’s story to a patient who was kind enough to ask- but had been rude to my staff and frankly too cavalier and too familiar with me. I will tell my daughter’s story as often as I can, but I didn’t like how she asked so nonchalantly “so, what happened to your baby?” It wasn’t nerves or awkwardness; I think it was her personality. “So you knew, then?” she asked matter-of-factly when I told her about the low fluid, the non functioning kidneys and potential for small lungs. “No, we didn’t know if she would live or die. No one could tell. We just had to wait and see when she was born.” I was annoyed that she seemed to imply that knowing ahead of time made it easier for me. It minimized all the grieving I did in my pregnancy and all the grieving I did (and am still doing) afterwards. Worst of all was her casualness about it all. I was left with the impression that she thought it could never happen to her. Newsflash- it could. It probably won’t, but it could.  For the first time, I felt some regret about sharing.

Have you ever shared your loved one’s story and regretted it afterwards?

Frozen

On a cold night in January I made Chris take me to see a movie in the theater. I was feeling badly- my mood was really low, which was not uncommon. When you’re told that the baby you’re carrying, your first child, a strongly desired baby, will likely die because her kidneys are broken, making low fluid and causing her lungs to be really small, sometimes your mood gets low. In was one of those days and I just couldn’t shake it. Chris asked me what would make me feel better and I told him going to the movies. It was a good idea too even in our hopeful times. Our baby’s death was not a certainty. It was possible she could live and if she did she would be medically complicated needing lots of care. If she survived, a night out at the movies would be impossible, so might as well do it while we could.

“Frozen. I want to see Frozen,” I told him.

“Are you sure?” he asked me. “There are likely going to be lots of kids there.”

I was sure- I wanted a movie that wasn’t real and I’ve always been a fan of kid movies. So after a near miss (the first movie theater we went to had lost power), Chris and I found ourselves walking carefully across an icy parking lot to the theater. He held my arm the elbow as I maneuvered my thirty two week belly around.

“I can’t fall!” I said to Chris almost jokingly. “We’re not monitoring!”

In pregnancy, if you fall, especially in the third trimester, it’s standard to be seen in the hospital for some monitoring of the baby afterwards- to make sure there are no contractions or signs of a placental abruption. We had had to make some difficult decisions regarding monitoring of our baby. With no fluid, there was a great risk for stillbirth. The baby’s heart rate could be monitored for signs of distress, but it’s an inexact science and most stillbirths in these circumstances happen practically in an instant. We had the option of being admitted from the diagnosis at 27 weeks and monitored 24/7 or we could do weekly (or any other chosen interval) monitoring or we could do no monitoring. Choosing monitoring meant we were willing to have an emergent c-section- potentially affecting my future fertility- and allowing our baby to be born prematurely. We made a highly researched and educated decision (met with many specialists) that our baby had the best chance of life if she was born after 34 weeks. We chose no monitoring until then, recognizing if she had distress before then we would lose her. Upon admission we would take no chances and I would be admitted for 24/7 monitoring. So at 32 weeks, if I fell, I would have to decide whether I’d want to break that plan and be monitored, risking early delivery if there was distress. On the flip side, if there was distress, we wouldn’t know about it and my baby could die inside me.

“No falling!” Chris assured me as he gripped my arm tighter. The ground glistened with black ice. We slipped and slided with several close calls but made it safely into the theater. I watched Frozen and was delighted.

When Mabel died, my family came for her services. I found a little joy in the innocence that was my niece. At 3 years old, she was rightly obsessed with Frozen. She would sing, somewhat unintelligibly and very much off key, the words to “Let it go” and dance around the living room. She built her very first snowman (a big deal for a kid who has only grown up in southern California) and named it “Snowloff.” In the weeks that followed, long after my little niece left, I found myself saving “Let it go” to my playlist. I’d sing along to the lyrics in my somewhat unintelligible and very much off key voice:

“Don’t let them in, don’t let them see

Be the good girl you always have to be

Conceal, don’t feel, don’t let them know!”

A perfect anthem for my grief.

This week I went clothes shopping. A secondary gain since my daughter died (I hate that term- is there a better one? An unintended benefit?) is that I’ve lost some weight. Extra time on my hands and needing an outlet for my anger and grief has brought me down below my pre-pregnancy weight. I know I am fortunate that this happened this time- in the past I’ve been a very emotional eater and gained when I was down. Now I’ve found that I don’t fit into my clothes. So I finally put the hopes of a future pregnancy aside and decided to invest into some clothes that fit. I needed to look somewhat professional in pants that weren’t super baggy. A quick trip to Kohl’s and I found some duds that fit the bill. As I was headed to the check out, a sweater caught my eye. I had wandered past the juniors department and just kept staring at this one sweater. I went up a size, figuring the juniors sizes would be ridiculously small and tried it on in front of the mirror. I was smitten.

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I like warm hugs

Chris rolled his eyes when I showed it to him at home. He said “o-kaa-ay” in that two tone mild sarcasm when I put it on to wear it out to the movies (now with no baby, we have the freedom to do so whenever we want). But I told him in the car how when I wear this sweater I think of Mabel- pregnant with her skating across the theater parking lot, my niece singing it before we went to Mabel’s wake and the lyrics of it’s main song that was the anthem to my grief. He held my hand proudly in the theater afterwards.

Mabel has her carrots, but she also has Frozen. I know I’m not alone in these comforts- there are Hugo’s stars and Gideon blue.

Do you have something you wear that makes you think of your baby?  

Day 27: Express

36+2

Today I have been without Mabel more days than I had been with her. For 36 weeks an 1 day she was safe. Despite the low fluid, my body nourished her, grew her and comforted her. All her needs were met and she wanted for nothing. She was safe. She didn’t need kidneys or lungs- my placenta did all their work for her. Her clubbed feet fit nice and snugly in my uterus. The holes in her heart made no difference- just added to the flow. Her extra chromosome was invisible inside me. I would have kept her in longer if I could. A few days before labor I asked if we could push out my induction for two more weeks and was thrilled and relieved when my high risk doctor and midwives thought it was a good plan. Mabel thought differently. She decided at 36 weeks that she her time inside me was up. I like to think that had she stayed inside longer, she might have died or had such distress I would need a c-section, and so she chose to come on her own so that I could meet her alive and have the vaginal birth I had hoped her.

last photo of me, pregnant at 36 weeks and 1 day, moments before Mabel and I became two separate beings.

last photo of me, pregnant at 36 weeks and 1 day, moments before Mabel and I became two separate beings.

Today is 36 weeks and 2 days since that day. She has been out longer than she has been in. In a few more days she’ll have been buried, in the dark of the earth, longer than she had been snuggled in the dark of my womb.

Her memory fades with time. Sometimes it’s hard to believe that she was real- that this really happened. Holy sh*t, I had a baby. I was a mother. My daughter died. I don’t remember what it felt like to be big and pregnant except for the random phantom kicks I still get. They are sparse and an awkward reminder because my baby had no fluid, so she wasn’t the biggest kicker. My pregnancy almost feels invalidated by her death. No one will ask me about my experiences when they are pregnant for the first time. No one will seek my advice. No one will ask for baby clothes hand me downs. And then they’ll have their babies and I ‘ll be even more useless, because though I had a baby I know nothing of parenting a live child- unless of course someone wants advice about taking their baby off life support.  I know a few things about that.

I thought I would do something to mark the day I turned 36 weeks and 1 day without Mabel, but the day came and went. It feels like my due date felt- an end to something that I don’t want to end.

Today I’m sad that the time I will be without my daughter will continue to grow longer and longer but my time with my daughter will forever be shorter.

#CaptureYourGrief