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.

Wouldn’t it be great if it did

I finished ” When Breath Becomes Air” not too long ago. The book is memoir by my friend Paul.  Paul was sick- diagnosed with terminal lung cancer at age 36.  He and his wife Lucy were debating whether or not to have a child, knowing that his time with her might be brief. Paul wanted to leave Lucy with a piece of him- a child they had always planned on having.  Lucy worried that having a child would make his death more painful.

“Wouldn’t it be great if it did?” replied Paul.

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There was a time when I wished none of it had ever happened.  The joy of becoming pregnant followed by shock of learning our baby had Down Syndrome and then the high risk of loss.  The gradual acceptance and even excitement that followed only to have that taken away, when we were learned she would likely die due to birth defects.  The magnitude of grief I felt after she died was overwhelming. I thought I was protecting myself by trying not to bond too much while pregnant with a baby with a life limiting diagnosis. I thought my grief would be manageable because I knew ahead of time.  I felt like there was an expectation (self imposed?) that I shouldn’t be that sad because I knew ahead of time.

When I was in my darkest times, I sometimes wished it never had happened. I would have never felt the pain. I would have just continued to live my life, innocent of such sadness, happily married, practicing midwifery.

But then there would have been no Mabel.

Now that my baby has been gone for over two years, I can see things a bit differently.  Oh yes, it hurt to lose my child- one that I had hoped for, one that I had said “yes” to under difficult circumstances.  But that pain was evidence to the great love I had.  Yes, Lord Tennyson, it is  better to have loved and lost than to have never loved at all.

 

Down Syndrome at the Dog Park

There is a dad who comes to the dog park with his large golden doodle and his young son.  I’ve interacted with them before, like many other dog park regulars. We usually talk about our dogs- asking their names, ages, where they are from.  On this one day, though, I felt moved to say more.

When the three of them came into the park, the dog took off leaving dad and son to walk up the path.  I yelled an excited “Hi, Pete!” to the blur of a dog as it ran by.  The dad heard my greeting and walked over.  “I’m sorry. I don’t remember your dog’s name,” he said apologetically.  When I named Muppet. He responded, “and what’s your name?” shaking the small fist of the baby strapped to my chest.

“Felix,” I said smiling.

As he asked me about Felix’s age, his son came over and simply put his head up against Felix’s belly.  I smiled an decided to do something a little courageous.

“Does your son have down syndrome?” I asked.

“Yes,” he responded, hesitantly, almost protective.

“My daughter had Down Syndrome,” I could see his expression soften, “but she died after birth. It makes me happy seeing your son interact with Felix because it let’s me picture what it might have been like if she lived.”

We then proceeded to exchange diagnosis stories- him at birth, after normal testing. Me, in pregnancy after very abnormal testing.  Both of us “young” in the obstetrical world- without risk factors (though most babies with Down Syndrome are born to mothers who are medically “young.”) Both of us shocked. We talked about our connection to the Connecticut Down Syndrome Congress. He told me how is his native country, Russia, Down Syndrome is almost something to be ashamed of, giving me insight to his initial protectiveness, when I asked about his son.  It also made me thankful that I live in a country where the two words that make up Down Syndrome are not a cause for shame. There is still a long journey towards inclusion and acceptance, but it’s progress.

My testaments

I was recently introduced to this video.

http://www.huffingtonpost.com/entry/dad-breaks-down-in-tears-explaining-what-he-knows-about-down-syndrome_us_56cddfd6e4b0928f5a6df16e

It spoke to me on man levels. There is the obvious reason- it’s about Down Syndrome.  But there is a more subtle reason- it’s about a parent wanting to speak up for his child but struggling to find the words at the right time. I feel so connected to that feeling. How often do I want to speak about Mabel, but I don’t know quite how?

The dad felt like he failed his son, so made a video about it- as a testament. I come here and I post on facebook, saying her name, posting about baby loss, writing about grief. These are my testaments.

Lunch date

They sat at the table next to us.  We were on a lunch date, me and Chris.  They were on a lunch date, mom and daughter.  Mom had the brussels sprout salad, daughter had the fried calamari, scrunching her face at the pieces with tentacles.  “Is that octopus?” she asked.  They both had fish for the main course. We left before they ordered dessert.  “Sociology,” the mom said. “No, he texted me! He said psychology!” The daughter corrected.  She was in high school. They had an easy banter between them, not “best friends” but clearly mom and daughter.

I know Mabel and I would never had had such a lunch date, nor easy banter with big words like sociology or psychology.  She would never had lightheartedly mentioned texting.  Yet I was envious of them.  In a different world, fifteen years from now, I could have been taking Mabel out for our own kind of lunch date. She would have been so proud to be out with her mom in a fancy restaurant, ordering from a grown up menu.  She would likely have squealed at the tentacled pieces of calamari and ordered the fried food over the vegetables.

An unexpected reminder of what will not be.

Mothers of Louise

http://www.buzzfeed.com/krishrach/a-mom-shared-the-annoying-things-said-about-her-daughter-wit

I am a “mother of Louise.” A silent one, perhaps, because I only experienced such comments while pregnant (and yes, I really did), knowingly carrying a child with Down Syndrome.  The comments are real and I’m sure would have kept flowing.  I understand people often have good intentions at heart (as they do when they try to comfort babyloss moms- it’s surprising how much crossover there is there), but words are powerful.  These corrections are not meant to shame anyone who has said an unwittingly hurtful comment, they are meant to educate.  I’m sure I have and still do say hurtful things unknowingly and as hard as it may be to hear that I’ve done so, I will try to appreciate anyone who tries to educate me.

This mom makes me proud.

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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Thank you nurses and midwives

This week is a big week in my healthcare world.  It is Nurses’ Appreciation Week and tuesday was International Day of the Midwife.  In honor of both celebrations, I wanted to thank my beloved nurses and midwives.

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Dear Nurses,

thank you for bringing some laughter into my triage room as we waited for the maternal fetal medicine doctor to come and give me terrible news.

Thank you for being the protector of my privacy- making sure I was ready for visitors in the midst of emotional turmoil.

Thank you for telling me about the “secret menu” the hospital offers where I can order quesadillas and pork bacon.

Thank you for sitting and chit chatting during my two week stay, keeping me sane and reminding me that things were happening beyond the fetal monitor I was trying not to watch.

Thank you for watching that fetal heart rate monitor so I could have the freedom just to be pregnant, knowing my baby was safe.

Thank you not commenting on how ridiculous i must have looked in in my sleeping outfit- it was just too hot to wear pants even though I knew you’d be coming in to readjust the monitor.

Thank you cheering me along in my in hospital exercise regimen.

Thank you agreeing to be my labor nurse, knowing my case would be emotionally hard and would likely sit in your memory for a long long time.

Thank you for taking photos of Mabel’s birth- not in your job description, but so meaningful to me.

Thank you for watching my baby in my stead, while she was whisked away to the NICU and I got my stitches.

Thank you for repeating everything the neonatologist said, right after he left because I could barely process it all.

Thank you for getting Mabel skin to skin with me for as long as humanely possible.

Thank you for the footprints, in ink and in clay, that turned out amazing, all done while she was on my chest.

Thank you for making sure she wasn’t in pain.

Thank you for taking out her breathing tube, gently, allowing me a first good glimpse of my daughter’s face free from medical equipment.

Thank you for taking photos, during her life and her death and in the after.

Thank you for feeding me, which I needed direly, but was unable to recognize myself.

Thank you for being present but unobtrusive.

Thank you taking her gently when I gave her up that very last time.

Thank you for giving me peace and solitude to sleep and to grieve in the hours after I gave her up.

Thank you for coming to her wake, taking me for walks, bringing me food in the aftermath.

Thank you for being part of it all and keeping her safe, in pregnancy, in labor and in the NICU.

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Dear midwives,

Thank you for all the extra care

Thank you each for calling and checking in when we got the news about Mabel’s Down Syndrome.

Thank you for letting me make tons of extra visits to help keep me sane.

Thank you for letting me use my appointments as mini therapy sessions

Thank you listening for a heartbeat first thing, so I knew she was still alive, before doing the rest of the visit

Thank you for having the hard conversations with me- the ones that were hard for me and hard for you.

Thank you for being honest, saying “I don’t know,” when I asked how I was supposed to return to midwifery if my baby died.

Thank you for giving me the few things I had hoped for- skin to skin, Chris cutting the cord and announcing gender (if he could figure it out!).

Thank you coming to meet her in the few hours she lived- so that you are part of the proof that she actually existed.

Thank you for her dress, an outfit given with love and purpose, the only outfit she worse outside her grave.

Thank you for eating wings with me, bringing me cabbage leaves for engorgement and looking at photos in the aftermath, reminding me that you are not only my midwives, but my friends.

Thank you for the donations you made in Mabel’s memory

Thank you for the lilac bush that you gave me because you know purple is my favorite.  It’s beginning to bloom right now.

Thank you for remembering dates- due dates and anniversaries.

Thank you for saying her name, easily and freely, just like she was any old living child.

Thank you for keeping her safe in my womb and alive in memory.

 

 

 

 

 

World Down Syndrome Day 2015

World Down Syndrome Day.

March 21- 3/21-  a day picked to represent trisomy 21 or three of the 21st chromosomes (most of us have only 2- the third is what is responsible for what we know as Down Syndrome).  It’s a day of celebration for the Down Syndrome community- a group I tentatively belong to.  For me it’s a day of celebration, a day of sadness and anger, a day of reflection.

Last year I wrote a letter to those who were expecting a child with Down Syndrome.  I’ve written a lot throughout the year about Down Syndrome- what I see in the news, how it crosses my path on a daily basis, my memories… I recently reblogged this post by Sadie at Invincible Spring, which I wanted to share again today, of all days.

1) Prenatal screening can detect the risk of delivering a baby with Down syndrome.

2) Prenatal screening can detect the possibility of delivering a baby with Down syndrome.
They mean basically the same thing, but not. We welcome possibility, while we shy away from risk.

After reading her words, I have totally changed my practice.  In the babyloss community we are admittedly very sensitive to words and phrases, even if they are well intentioned.  “God needed another angel” is well meant, hoping to give us comfort- but those words sting us, even those in religious communities.  Those in the Down Syndrome community, can experience the same hurt.  And it starts early- before a diagnosis is even made.  We obstetrical providers are the first to address the idea of having a baby with Down Syndrome.  Sadie’s words has made me rethink how my simple words as a midwife portray Down Syndrome in our society.  I no longer use the word “risk” when discussing  genetic testing.  I now talk about the possibility of having a baby with Down Syndrome.  One little word, that connotes so much.  Especially for me.

I was open to the possibility of having a child with Down Syndrome.  I opted for testing even though based on my family history and my age, I was “low risk.”  But as I have counseled patients in the past, low risk doesn’t mean no risk.  I wanted to know my chances of having a baby with Down Syndrome, even though I didn’t think it would change my management- I thought I would continue a pregnancy with that information.  I have also learned, we don’t really know what we would do until actually faced with a certain situation.  When I was told, “it’s Down Syndrome,” I felt relief. The initial abnormal screening had me worried about all the life limiting conditions it connoted, but Down Syndrome was livable in my mind.  My baby could live!  I certainly cried my tears later over the loss of the dream child I thought I was having, but I also eventually embraced the idea- going to my state’s annual Down Syndrome conference, talking with parents of children with Down Syndrome, researching therapies and pediatricians who specialize in children with Down Syndrome.  I had a registry full of special baby wearers and toys made for children with Down Syndrome.  I accepted.  My baby began to feel extra special- yes, a wanted baby, but a wanted baby with Down Syndrome.  An estimated 92% of pregnancies diagnosed with Down Syndrome are terminated.  I was proud to be part of the minority, and also sad that I was part of the minority.  In some ways, I feel future pregnancies may never have that same specialness.  Don’t get me wrong, I hope for nothing but as healthy a baby as possible, but having a baby with the typical number of chromosomes seems almost easy.  Almost.

International Down Syndrome Day is also a little painful for me.  I see photos of smiling children on the news and flooding my facebook and blog feeds, their features of Down Syndrome evident in their faces and their stories of how happy and loved they are written underneath.  I so badly wish I could be in that club- that club I at first never wished I belonged to- the parenting a child with Down Syndrome club.  It’s a lovely community, full of support for people having both an easy and a hard time.  Raising a child with Down Syndrome is a challenge- no one can argue that.  But what child doesn’t have his/her challenges?  Learning your baby has Down Syndrome simply makes your baby’s challenges known and upfront.

At times I can be a little angry- it was the extra chromosome that stole my baby from me.  Mabel’s kidney defects are rare, but they are more common in babies with Down Syndrome.  I sometimes get angry that I was in that minority that said “yes,” that I would raise a child with Down Syndrome, while the overwhelming majority chooses not to.  But I was given a child that wouldn’t live, while others terminated a pregnancy of child that might have lived.

I still believe in a woman’s right to choose. I just simply wish that more people would choose yes, when it comes to Down Syndrome.  It is not an easy road- sometimes it can end in heartache, like with me- but I don’t regret taking the risk of loving my child with Down Syndrome.  I would carry another child with Down Syndrome, despite the risks of loss.  There are no guarantees in life, in love, in family- all we can do is hope.

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In remembrance of our daughter Mabel, my husband is fundraising for Best Buddies, an organization that helps people with intellectual and developmental disabilities- including those with Down Syndrome.  On May 31 he is biking 100 miles across Cape Cod to raise money in her name for Best Buddies.  If you’re looking for a way to celebrate World Down Syndrome Day, consider donating by clicking here.

Mabel