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.

Sunday Synopsis

The Stone– A beautiful description of how grief evolves over time.  It’s there, never leaves, sometimes is heavier and more noticeable, sometimes just simply carrying on beside you.

Thomas Gray lived six days, but his life had lasting impact– wow wow wow.  I wish I had thought of donating organs to research for Mabel.  I had thought a little about donating her organs, but I wondered whether they would be useful due to her Down Syndrome.  Some organs were clearly not donatable- her kidneys were damaged, her lungs so small, her heart formed imperfectly.  But her corneas were likely fine.  Other organs maybe.  I might not have wanted to go through rejection of her organs for donation, but I never thought of donating for research.  Many props to Thomas Gray’s mom who not only thought about and did this for her son, but also is telling the world about it- spreading his legacy and giving options to those pregnant with babies with life limiting conditions.

Meet the very cute baby who was born without a nose– Love the positive image this post promotes about a child with a birth defect, one that makes him look different.

Baby Girl Memorial Scrapbook– Love this babyloss focused scrap book.  A way to give us a chance to make something for our babies without the pain of sorting through all the living children memorabilia

When grief becomes a disorder– I mull over this in my mind a lot- where do you draw the line at complicated grief? When someone is grieving too long or too much? We are constantly affirmed that no one can tell us how to grieve, but I feel like, here they are.  At the same time, I also believe some people could benefit from medication.  Not everyone, of course.  And I don’t think that we should medicate all grief- make people happy and forget about their loss.  But thats not what most medications do.  As someone who has benefitted from medication (but also has had a pre-existing anxiety disorder), I think meds helped me in some ways and also delayed some of my grieving process in others.  Is grief a disorder? yes and no.  It requires attention and care like other disorders, but there is no fixing it either.

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?