A dream about Mabel

I had a dream last night that I was about to birth Mabel.   My midwife was there with one of the labor nurses.  After she came out, they had me leave the room.  We knew she was going to die.  When I returned she was gone and they replaced her with another baby- a boy.  I cried tears of pure happiness that I would be taking a baby home.

This dream has unsettled me.  I have had only one other dream about Mabel not long after she died.  In the dream she was alive and I held her in that white blanket we had wrapped her in and nursed her.  That one was about what I missed about her.  But this last one felt like it was about something else.  I don’t want her to think that she can be replaced and I’m saddened to think my mind is working that idea out in my sleep.  On the other hand, the joy I felt at the idea of being able to bring a baby home, was unreal.  It’s almost too painful to think about.  I think that joy is what has shaken me the most.  What is it like to bring a baby home?  To hold a baby in your arms as you leave the hospital?

As we visited her grave today, I was reclining back on the blanket we spread out.  I read to her from one of my favorite childhood books and pictured her curled up asleep on my chest.  What a painful joy it was.

The highs and the lows

I came away from my support group last night on a high.  It’s the second meeting of this particular group and I was looking forward to it.  It’s a funny bond to share.  There are people in the group I really like and we are slowly forging friendships.  It is so comforting to talk about my baby easily- talk about the good things and the sad things.  No judgment.  No worries about whether mentioning her name will kill the conversation.  No secret burdens to bear.  I shared my excitement about some future projects I want to develop to help this new community I have found myself a part of.  I drive home grinning, thinking about how one of the familiar faces at the group looked at me and said, “It’s good to see you smiling.”  I usually cringe at comments that mention how good I look.  I interpret them as relief that I’m better; that I’m no longer sad about my daughter.  In this group of the babyloss, I know that they don’t think that.  They are not over their sons and daughters and never will be, just like me.  They know that I’m not better- I am just different.  I drive on, thinking about how much I like these people, wondering how to incorporate them more in my life.  They round it out.

And then I come home.  I see on my very carefully selective social media feed the hint that someone is in labor.  I am reminded once again how I have no baby.  The world goes on.  The newborns in my family now number two in one week.  It was due to come and at least it’s over.  I no longer have to wait on bated breath wondering how I will feel.  I am in it.  That gorgeous, freeing high I had felt just moments ago is lost.  I am angry.  Angry that I am alone in my sorrow.  Angry that I had finally felt some sense of peace and it was ripped away from me.  I am a puddle of tears heaped on the floor of my living room, the laundry needing to be folded pushed aside, the glass of wine on the coffee table forgotten.  I hate this!  I hate this!  I scream in my head, teeth gritted as the howls come out.  As I lie on my side, curled up in a ball, chest heaving, hands covering my face trying to hide the stream of tears, I think if only people could see me now.  THIS is how it feels to have buried your baby three months ago. THIS is how I am. 

The low continues on.  Sleep can often reset my emotions- a new day, a new outlook.  But as I sit at my breakfast table, looking out on my sun streaked lawn, facing a beautiful day, I find myself in tears.  Angry, forceful tears over how I spend my days reading online posts about babyloss and grief.  Sad, mean tears over how my bereavement group is the thing I look forward to most these days.  Lonely, hot tears over how buying a bouquet of flowers for my daughter’s grave is the only way I know how to mother her.  Today’s sunshine is lost on me because I am sad.  So very very sad.

I miss my daughter.

My local midwife meeting

I sat at my quarterly statewide meeting of the American College of Nurse Midwives, surrounded by a mix of midwives I’ve known for years and many new faces.  Some I see regularly in my day-to-day life; some I only see at these meetings.  A few knew what had happened; many did not.  The meetings are a chance for us to catch up socially, discuss political action items and learn something.  I had decided earlier that day that I was going to speak when it came to announcements from the members.

When the time came, my heart pounded in my chest as I looked at the thirty or so faces staring at me.  As I began to talk, the scraping of plastic forks and knives against the paper plates filled with potlucked food ceased.  My voice steadied as I began speaking the words I had rehearsed in the car on my drive to the meeting.

“For those who don’t know I had my daughter Mabel in February.  From thirteen weeks we knew that she had Down Syndrome.  At twenty-seven weeks I was diagnosed with oligohydramnios, due to her failing kidneys.  At thirty-six weeks I went in to labor.  She lived for six hours and died of pulmonary hypoplasia.  I spent my pregnancy preparing for a baby with Down Syndrome and learned of some resources that I didn’t know of otherwise and thought they would be helpful to us as providers…”  I went on to describe the resources and gave a handout.  I ended with “I don’t know what it’s like to raise a child with Down Syndrome, but I know what it’s like to be pregnant with one.  And now I know what it is like to lose a baby.  So if anyone has any questions about Down Syndrome or loss, I’d be happy to talk more.”

I told her story.  I told my story.  Stories intertwined liked the ropey veins and artery of her umbilical cord, literally connecting her life with mine.

I was well received; several people came up afterwards to give me condolences.  It was empowering to tell Mabel’s story.  I hope to do more of it.

It was a start.  Our stories are unfinished.  I can see how the next few chapters may unfold.  Mabel will speak her story through me, teaching providers in the medical community about Down Syndrome and about perinatal loss.  Together we will help create more compassionate care.  Together Mabel and I will keep writing our story.

One of the midwives, familiar with Mabel’s story, held the handout and said in front of the group, “Are those Mabel’s feet?” referring to the small photo I had put on the paper.  Yes.  Those are her feet.  Take them home with you.

What’s new?

“Meghan! What’s new?”  she asked all smiles.  I had seen her yesterday at bootcamp.  It had been over five years since we had last seen each other- a friend of my ex-boyfriend, we had fallen out of touch.  I said hello once I recognized her and we had a brief exchange.  The next day she was there again at bootcamp.  This time we had a little more time for a conversation.  But how do I respond to that?  What’s new?  My baby died.  But that’s not the right answer.  Instead I shrugged and she asked if I was still working at the same practice; I asked if she was still teaching at the same school.  She then volunteered that she had a son!  Last I knew her, she had just had the second of her two daughters.  I had visited her after her first; I remember the hospital had forgotten to take of the baby’s umbilical clamp.  She had named her baby the French version of what we named our daughter- I remembered that fondly when I saw her face the day before.  And now she has a son, too.  “So you’re married?”  Yes, I responded waiting for the follow up question.  I braced myself, heart pumping, but ready to tell her I had a daughter who had died shortly after birth, three months ago, when she asked if I had kids too.  She didn’t ask.

I was awkward.  Not the usual good small talker.  I bumbled my way through the conversation and left feeling quite unsettled.  I didn’t get to say it.  To tell her I had a daughter too.  I had to take several calming down breaths as I walked away.

Why is it so important for someone to ask me?  If I had living children, they would come up in conversation naturally.  “Oh, I have to run to pick up my son from day care.”  Or “I didn’t get much sleep last night. You know how it is, teething.”  But when the only child I parent is dead, those opportunities don’t present themselves.  “I have to run to pick up flowers for my daughter’s grave.”  Or “I didn’t get much sleep last night.  You know how it is, grief.”

Conversation continued around me as we did our warm up.  I was sitting next to a very pregnant friend and talk of the baby’s gender came up.  Another woman said that she was always wrong guessing with her own- she thought she was having boys and she had three girls.  After my bumbled conversation earlier I was sick of my baby being hidden like a dirty little secret, an unmentionable.  So I piped up too- “I was both right and wrong guessing my baby’s gender,” I said, probably a little too softly.  We were on to the next stretch and the conversation trailed off.

I so very badly want to be part of the kid conversation; I feel I have every right to be.  But how do I do it in a socially acceptable way?  How can I say “Oh, I had a baby recently too! But she died.” without killing the conversation?  If it’s asked of me, it’s easier to discuss.  But to volunteer the info?  If I say it, she would leave the exchange feeling uncomfortable.  If I don’t say it, I leave the exchange feeling uncomfortable.  Who wins here?  Certainly not me.

Mabel’s wake

The funeral home director is a man seemingly in his thirties- younger than I would expect.  He is appropriately somber and a little too easy with a smile at the same time.  He goes through what is involved in burying a baby.  There is one type of casket, white and plastic, made at cost.  It is some sort of makeshift holiday- president’s day, I think, so it’s unknown if we’ll be able to get the casket in the next day or not.  Do we want a graveside service?  Here is a minister that comes highly recommended.  Will we have an obituary?  We want all the names of our siblings, her aunts and uncles, included.  Yes, there are a lot of them and yes, we wanted them all listed.  What do you want on the prayer card?  We flip through the book and my eyes well up as I read ones clearly made for babies.

The funeral director is not there the day of the wake.  We enter the building with photos and a scrapbook in hand, greeted by strangers.

As Chris and I are led down the hallway towards the large room that holds my daughter in her casket, I try with little success to stifle the sobs that start to surface.  Chris holds my arm as we enter the room to spend our last moments with our baby.  There she is, in an eternal slumber.  Eyes closed, face peaceful, she is dressed in her soft white bunny outfit- the first time I’ve seen her in it.  Now that it is just Chris, Mabel and I, I let the tears come.  I cry and I cry, seeing my beautiful newborn daughter.  I want to touch her, but I don’t want to feel the coldness of her skin, so I refrain.  “She looks good.” I say to Chris.  And she does.  She looks just how we had left her.  She shows no marks of her journey from my embrace to the nurse’s arms to the morgue’s table to the funeral home.  There is no evidence of the cuts we allowed for the autopsy to help us determine just why her kidneys didn’t develop.  She is angelic; she is my baby.  After I feel like I can’t cry any more tears, Chris tells the funeral home employee that we are ready for our family.  They line up silently, each waiting their turn to kneel by Mabel’s casket.  They go in pairs, some seeing her again, like my parents and cousin, some seeing her for the first time, like Chris’s parents and our siblings.  I watch my Dad cry- something I don’t ever remember seeing him do.  I watch as my sister brings my three year-old niece up.  After everyone has a turn, my niece runs back up, saying, “I want to see baby Mabel again.”  The sincerity in curiosity make her words play over and over again in my head.

I take note of all the flower arrangements, from our family, friends and workplaces.  Some still sit in our house today.

As the clock nears four, the starting time of the calling hours, Chris and I spend our last moments kneeling in front of our daughter.  This is the last time, the last time I will see her face.  Disbelief takes over.  The funeral home employee returns to the periphery and we nod in his direction.  He comes and closes the casket, placing a large flower arrangement on its lid.  Slowly friends, family and coworkers trickle in.  They sign her guestbook and stop at the table of photos.  As they flip through the scrapbook I made, I can see them point at certain pictures and make cooing comments to each other.  When they finish, most head directly to us, missing the tiny casket on their left.  They don’t even realize there is a baby in the room with them.  She is right there.  Some see the kneeler and realize they can be right beside her for a moment.  They all make their way to us, a receiving line in shades of black.  Chris and I welcome their tear stained faces.  I smile at them, motioning back to the photos, and say “Did you see her? Did you see my Mabel?”

Glimpses of Mabel

I see her in the supermarket, eight years old with straight sandy blonde hair.  She is next to her father, peeking over the freezer bin.  She has the unmistakable face of a child with Down Syndrome, something I am acutely aware of now.  I look up at the man beside her- he is not Chris and his daughter is not Mabel.  But for an instant she was.

I walk into the library and choose the door on the right.  The one on the left is has the blue handicapped placard on its center.  I see a little girl, five years old, head down hands out, pushing against that door.  Her tongue sticks out of the corner of her mouth in little-kid exertion against the heavy door that is no match for her little frame.  I blink and she is gone.

I walk down the bike path with a friend, bikes whizzing by, an occasional jogger and many other walkers out enjoying the day.  I see the mom walking with her teenaged son, another face revealing the features of Down Syndrome.  I see a teenaged girl in a loose dress trudging along beside them.  I smile at their puppy love.  My friend notices the boy too and squeezes my hand.  I take a deep breath in and the girl fades away.

I walk to my bedroom and eye the open door to the guest room.  I see a crib in the corner with a mobile hanging over it.  I lean over the railing and spy a chubby pink baby, legs in cast, arms flailing, hair matted from a hot slumber.  She looks up at me and her eyes sparkle as a smile takes over her lips, recognizing her mother.  And then I am back in the hallway, looking through the open door at a dresser strategically placed where the crib would have gone.  I turn away and continue on my day.

Welcome to Holland

In 1987 Emily Perl Kingsley wrote an essay about raising a child with a disability.  The story goes that parents get on a plane bound for Italy- their dream vacation.  When they land, they disembark into Holland.  They are disappointed that this is not what they signed up for and mourn the loss of what they thought was the ideal vacation.  After time, they get to know Holland and see the beautiful history and colorful tulips and finally recognize that Holland is beautiful and rich in its own way.  They are happy they landed in Holland and wouldn’t have it any other way.

I signed up for a trip to Italy and got the diversion notice to Holland quite early in my trip.  I said, ok, let’s go to Holland.  Then my plane was diverted to Siberia.  Ok, I said, let’s go to Siberia, as long as we land safely.

My plane crashed in the ocean.  I am sinking, drowning, awaiting rescue.

I see plane after plane fly above me, bound for Italy, bound for Holland, bound for Siberia.

They will land safely.  Some people look out the window and see me flailing.  They recognize how fortunate they are to get to their destination.  Some wish they could help in someway, but are lost in the how.  Some people fly cluelessly above, having no idea that planes get diverted or crash.  Some people look down and see me, patting their bellies and thinking smugly, too bad for her and then go back to planning their vacation, making reckless decisions like not even wearing their seatbelt.

A few other survivors bob along with me in the ocean, but they have floated too far for me to even call out to them.  I float alone, my tears spilling in to a sea of sorrow that will soon swallow me up whole.  Where is my rescue?

On church…

I don’t go to church.  I was raised Catholic and find many good virtues in the religion.  I get comfort from many of the traditions and have been blessed with a strong sense of Catholic guilt.  I lapsed a bit in college, high on my new found freedom to do what I want, going only when I felt lost and needed a sense of community.  In grad school I left the church completely after attending a neighborhood church.  Reading their bulletin, I realized they were the ones picketing the Planned parenthood down the street.  Regardless of my views on abortion, I resented those picketers.  They scared off people who were going for cervical screening, treatment for STDs and birth control to protect against unwanted pregnancies.  My political ideology and views on women in general were never quite in line with the interpretations of Catholicism, but I ignored them for the general good values I respected- things like being kind to others.

I like the idea of religion.  I enjoy the community it brings and I think most religions all share the most basic core beliefs.  Some sort of spirituality and belief that we should be good, kind people.  I dabbled a little bit with Unitarian Universalism.  I still feel like it is the closest to my beliefs, with its welcoming of all walks of people and its liberal views.  I still go to Catholic church when I am with my family for holidays like Christmas and Easter.  It pleases my father.  But I respect the religion enough to stop taking communion, something reserved for believers.

When I was pregnant I tried to reestablish a connection with a church.  I thought I could use some community support and religious guidance when we learned Mabel would have Down Syndrome.  My friend took me to her childhood Episcopal church in my neighborhood.  It was very reminiscent of a Catholic service- similar prayers and structure, but more liberal in some of their views.  I sat there watching the small children’s choir, trying to picture my unborn child in years to come, up there singing with them.  The service was nice, but it didn’t feel right.  I returned to the Unitarian church I had tried in the past.  I was enjoying the service and was joining in song with the congregation, when a wave of sadness overtook me.  I grabbed my things and ran to the parking lot, trying to hide my tears.  I couldn’t get myself under enough control to return inside.  I went again a few weeks later and had a replay of what had happened the last time- uncontrollable waterworks.

After we learned that I had low fluid, making Mabel’s prognosis poor, my work was kind enough to give me some time off to adjust.  That time coincided with Christmas, so we visited my parents.  As tradition dictated we all bundled up to go to mass on Christmas Eve.  I walked in with my brothers and aunt, while Chris and my dad parked the car.  I picked up the hymnal and started singing some Christmas carols with the rest of the church.  I’m unsure whether it was the words of the songs, the rejoicing in God or the act of being in a church for the holiday-something that brings up childhood memories, but tears came on suddenly.  I was pregnant with a child I wanted so badly and that child would likely be taken from me.  I couldn’t understand how this God that we were celebrating would let that happen.  I hurried out of the church grabbing Chris along the way.  We spent the rest of the time walking around the neighborhood.

I haven’t been to church since.  We had Mabel baptized by the hospital chaplain at my father’s request.  We had a Methodist minister preside at her funeral, not realizing how Christian a non-denominational service would be.  In retrospect I wish I had contacted the Unitarian Church for her graveside service.  We wanted some structure and the Unitarian minister could have provided that with words more aligned with our beliefs.

I don’t know what I believe now.  I wonder at how this is just in any God’s eyes.  I don’t take comfort in God needing another angel or having a higher plan.  I suppose I would have needed to already have some sort of strong belief before anything bad happened to receive solace and guidance.

This I know: I need to believe that there is good in the world and if I continue to be a good person, good will happen to me too.

Jam Ball Slams

I cradled the twenty-pound medicine ball in my arms above my third trimester protruding belly.  When the timer went off I lifted it above my head and slammed it down on the floor, squatting to pick it up on one bounce.  An exercise meant to work my arms and legs, these “jam balls slams” also gave me a release.

Every time I lifted that ball above my head, I brought with it a different anger.

Anger that my baby would be sick.

Anger that worry instead of joy was the my prominent feeling through my first pregnancy.

Anger that others seemed to have it so easy.

Anger that my devotion to helping women with their pregnancies was rewarded with a baby that would likely die.

Anger that no one could tell me what would happen.

Anger that my baby might suffer.

Anger that despite all this work I might leave the hospital with empty arms.

I slammed each angry thought into the floor, releasing it from my chest, freeing me to remember the good things.  My baby was moving.  She was wanted.  I was fortunate to simply be pregnant.  I was healthy.  My baby might live.

 

Then my baby was born and she died.

 

I returned to boot camp a few weeks later and eyed those medicine balls.  When my turn came, I held the ball above my head, with all the anger in the world and slammed it again and again against the floor.  Tears streamed down my face mixing with sweat.  My cheeks red from exertion and emotion, I tried to throw my anger away.  Anger that my baby died.  Slam!  My baby died.  Slam!  My baby died.  Slam!

I walked away, leaving a little bit of anger on that floor, freeing me to remember the good things.  My baby lived.  She was here.  She was beautiful.

Mabel’s thoughts on where she is now

Buried in the dark earth, I blink my eyes.  It is dark and warm, familiar almost.  I take a deep breath in and feel my lungs expand.  I can breathe! I shuffle in my tight little cocoon, feeling my soft white bunny suit against my skin.  I check to make sure my friends- my two stuffed bunnies- are still with me and smile when I find them.

As I wipe the sleep from my eyes I realize what had awoken me.  I hear the mumblings of your voice.  Your voice is soft and muted, like it was when I was inside you.  I listen to your rhythmic singsong as you read to me- I love this story.  You said it was your favorite book as a kid and I can see why.  Truth is, I’m just happy to hear your voice.  I’m sad when you stop after a few chapters, wanting to know what happens next, but I know you’ll be back to read more.  Even though you’re silent now, I can feel the weight of you, like a heavy down comforter on a cold winter’s night, lying on the grass above me.

I remember when you first came- you cried and cried.  I tried to tell you I’m right here, but my words bounce off the cool earth above me.  They are nonsense anyways, just the coos and babbles of a newborn baby.  I want to tell you that I sleep a lot, really only waking when I hear your voice.  And I’m not alone- there’s a kind old grandma lady behind me and another baby in front of me.  It’s a slumber party!  We smile when we notice each other awake.  It’s nice here, reminds me of your womb.  I wish I could be on the outside with you, but it’s not so bad here.

Then I hear those words you always say when you’re about to leave.  “I love you Mabel. I wish you were here.” And with that, like a kiss good night, my eyes grow heavy and I’m asleep again, until the next time.