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.

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Friends remembering

My friend is a high school teacher and he recently posted on my facebook wall “Today in class, I reordered students seats by placing them in alphabetical order by middle name. One girl’s middle name was Mabel. I told her that my friend had a beautiful daughter named Mabel; she should wear it with pride.”

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At the Buddy Walk, a fundraiser for out local Down Syndrome congress, we walked with Jenna’s Journey- the team in support of a lucky little girl who I had the pleasure of helping into this world six years ago.  This year they walked in in honor of Mabel and Jenna’s mom had some great bracelets made.  There were many left over after the walk and I gave some of them to some of the donors to my next walk- Footprints on our Hearts, supporting my local babyloss bereavement group. The other day my friend was telling me how her daughter had taken a liking to the bracelet I had sent her.  Her daughter knew Mabel’s story- she remembered the day when her mom was really sad because of a baby that died- and so she understands the significance of that bracelet. Recently her daughter was changing and my friend noticed that she was wearing the bracelet around her ankle.

 

Nine months later and Mabel lives on.

 

Have your friends done anything in honor of your lost ones?

Day 25: Mother Earth

The prompt said to plant something, as an act of remembrance, allowing our children’s memory to grow over time.  But it’s October where I live, which translates into a cool New England autumn- not exactly planting season.  I have planted a garden in my backyard, a little plot that bears her name, filled will colorful flowers by our white fence.  I dug up, tilled and planted a veggie garden in my grief, another piece of land that will forever remind me of my daughter.

Since it’s saturday- our usual Mabel’s visiting day- when I picked up some flowers on the way home from work, I grabbed two bouquets.  When we arrived at the cemetery, we placed the colorful bunch of mini roses by Mabel’s grave and then wandered around the cemetery with the other bouquet- this one an orange one, the color of carrots.  We sought out headstones with specific dates- short intervals, or sometimes just one date.  Often it was one name carved in a stone meant for three that caught our eyes.  We were looking for children.  When we found such tombstones, we placed a stem of roses- a gift from Mabel to them.  Though it may not be planting anything, we remembered them today- acknowledging their short lives, giving them a gift from mother earth, letting them know that they are remembered.

#CaptureYourGrief

Mabel's roses

Mabel’s roses

One name on a headstone meant for three.  Her parents outlived her.

One name on a headstone meant for three. Her parents outlived her.

So many kids, so young

So many kids, so young

I know this child... sort of.  I say her name every day when I counsel patients about cord blood banking.  Her parents started a nonprofit in her name to benefit those who need stem cells

I know this child… sort of. I say her name every day when I counsel patients about cord blood banking. Her parents started a nonprofit in her name to benefit those who need stem cells

Mabel's neighbor, a three day old baby.  Sad that she's here too, but grateful Mabel has company.

Mabel’s neighbor, a three day old baby. Sad that she’s here too, but grateful Mabel has company.

The kids graves often stand apart for all their beautiful decorations

The kids graves often stand apart for all their beautiful decorations

A child clearly very remembered by friends and family.  Thought she could use one more person thinking of her

A child clearly very remembered by friends and family. Thought she could use one more person thinking of her

This one stood out- Mabel too had congenital heart defects, though it was her kidney/lung combo that limited her life.

This one stood out- Mabel too had congenital heart defects, though it was her kidney/lung combo that limited her life.

Only one date on this stone, like Mabel's.

Only one date on this stone, like Mabel’s.

Day 15: Community

As I read the online recipe, I glanced at the clock in the corner of my computer screen. “Oh, it’s seven o’clock!” I said to chris.  I put down the mixing spoon, setting my brewing dinner aside for a minute, found a candle and lit it.

“Today is the the official pregnancy and infant loss day out of whole pregnancy and infant loss month.  People are lighting candles at 7 across the world to remember their babies. ” I explained when Chris asked what it was for.

I felt kind of silly as the candle sat on my kitchen counter as I finished prepping.  It seemed almost sacrilege.  But once I got a free moment, I took the candle over to one of my favorite photos.  I see it, in the corner of my eye, and though I’m going about my usual evening tasks, it’s there.  Flickering, announcing my membership in a community that spans the globe, spans time- a wave of light they call it.  Silly as I may feel, this is where I belong.

I remember always, but today I remember her loudly.

#CaptureYourGrief

photo (31)

 

What Mabel can do

I received an email from a friend and fellow midwife not long ago.  I wrote yesterday about what I didn’t want my blog used for.  I don’t want her story to have a negative impact.  This email my friend sent is the opposite.  This is the intended purpose of my bog.

“Anyway, today I happened to be at a gathering with a mother of one of the little girls who was killed in the Sandyhook shooting. They built a playground in her honor near our house that we like to play at. I kept wondering if I should mention anything, or, if it would make her feel badly at the party to remember. But, I thought I you, and all you and Mabel, and that you like to talk about her and have people remember her. I thought this mom might like it too. I introduced her to [my 3 year old son] as “Alison’s mom”, and he told her how much he liked Alison’s playground. I think it was the right thing, I want to thank you for sharing and teaching.”

Learn.  Empathize.  Remember.

This is what Mabel can do.

Keepsakes for our Carrot

Mabel would have been three weeks old today.  I imagine I’d be celebrating things like, she slept for four hours straight!  or maybe more realistically, she’s coming off oxygen! She took pumped breast milk by mouth!  They say she can go home from the NICU soon!  But those are celebrations for my dreams only.  Instead, I celebrate other things. Showing a new person her photo.  Hearing her name said aloud.  Receiving things in the mail.

We have gotten many things in the mail.  The cards keep coming, which I eagerly check the mail for every day.  I like seeing Mabel’s name in writing.  But every now and then we are surprised by something that shows up on our doorstep.  And some of these gifts make my heartache in just the right way.  One of the first things we received was this:

photo 5

I thought it was a library bill or announcement when I first saw the envelope, but when I read the letter, I cried.  I am a reader and frequent our town library and so to know that there is a book there with her name on it and saying “Mabel who never quit,” still makes me choked up.  Some child will check that book out and ask their parent- “Who’s Mabel?”  They probably won’t be able to answer, but her name will be spoken.

Another surprise gift was a necklace that showed up in the mail.  I put it on immediately and have only taken it off to take this photo.  When I’m out of the house and thinking about her I can just reach up, touch my little carrot and bring it up to my lips.

A necklace with a carrot and M for Mabel

A necklace with a carrot and M for Mabel

We received two ornaments.  I lamented over our Christmas tree this year because we have many of Chris’s childhood ornaments, but none of mine (lost in a move).  But now we have some that belong to our family.  The first is a birthstone one.  We don’t know who sent it (so thank you to whoever you are.  Please let me know if it was you!)  It’s special for two reasons- Mabel’s birth stone is amethyst and so is mine.  Both February babies.  And its very similar to an ornament Chris and I bought on our honeymoon- a witches ball handblown from the Sandwich Glass Factory.

Amethyst birth stone ornament

Amethyst birth stone ornament

We also have a beautiful shell ornament, saying “Every life leaves something beautiful behind.”  It reminds me of the shell the chaplain used to baptize Mabel.

Shell ornament

Shell ornament

And then we received a package from Chris’s hometown.  Every time we go back there, he takes me to a local restaurant which he raves about- Portillo’s.  It’s known locally for their Italian beef.  We were sent a package of their beef and all the fixings.  Big smiles from Chris on this one.

Portillo's

Portillo’s

Italian beef with fixings

Italian beef with fixings

My work also dropped off this:

Mabel's tree

Mabel’s tree

A 50 year old bonsai tree, Mabel’s tree.  Gives me something to care for and expend some of my pent up emotional energy towards.

And last (though not least, there are many other gifts we have received and I’m grateful for all of them), the National Down Syndrome Congress sends us a letter when someone donates in Mabel’s name.  I cried when I got the first letter.  I know many have also donated to our local chapter- the Connecticut Down Syndrome Congress- as well.  It’s a way for someone else, many someone elses, to read and know her name.