Parenting After Loss

I was a mother before I became a bereaved mother. I recall in my early post-loss days, one mother, who had lost her firstborn and then went on to have a second child, commenting that it must be much more heartbreaking for me, having a living child first then losing my second-born.  I’m not sure about that. I  only have personal experience on losing my second, but my (unprofessional, inexperienced) opinion is that losing a baby sucks, period.

These are just a few observations that may be a bit unique to someone who had a living child/children prior to their loss.

On Being a Big Sister:

A seems to think that being a “big sister” is a milestone, something that all girls get to be someday (despite pointing out examples of people she knows who aren’t big sisters). This has produced comments through the years like: “that’s the big sister box,” (referring to a box of too-big clothes stored in the top of my closet) and “when I’m a big sister, I will put the pacifier in the baby’s mouth.” This obviously raises the question of whether or not she is now a big sister. We certainly count Baby C as a member of our family. I refer to her as my youngest daughter. But it’s not as simple as that. After all, A isn’t putting pacifiers in mouths, singing songs to Baby C, or keeping her entertained in the backseat of the car. Even now, she begins sentences with “When I’m a big sister…”

And then there’s the fact that A never ‘met’ her sister. Although we spent nine long months preparing her to be a big sister, she never saw that tiny baby she was looking forward to meeting. I feel like this has made the entire experience very abstract for her.

On Explaining Death:

After Baby C died, my husband and I were faced with the task of explaining there wouldn’t be a baby living with us after all. A’s only previous experience with death involved Nemo, her classroom Betta Fish. Everything I read about explaining death to children detailed being very blunt and honest. So I was. But for days after, A would ask when the doctors would fix Baby C so she could come home.

And 10 weeks later: “If a people dies you don’t grow and grow anymore, you just die and you don’t have your birthday anymore.” (Birthdays are a HUGE deal).

On Mama Guilt:

In the earliest days, I felt TONS of guilt that I wasn’t able to pull myself out of bed for my living daughter. Mother’s Day was 6 days after I delivered, and I spent the ENTIRE day curled up in bed crying. I’m hoping this isn’t a memory that sticks in my child’s head

I often worry that A will become damaged from my grief. It cannot be healthy for a child to continually witness her mother crying.

On Triggers:

Having a living child meant that, once I was able to remove myself from my dark bedroom, I was expelled into the world, no longer able to hide myself away from tiny babies and pregnant bellies. There were many tears held back in the middle of Target, parks, birthday parties, beaches, daycare, and Story Land. One day at my daughter’s gymnastics lesson, a mom was hiding in the corner breastfeeding and I started to cry. For that one specific example, I must have twenty more.

Audio books.  Junie B. Jones. This one that my daughter LOVES but makes me cry every.single.time. I asked her why she loves it so much. Her response? “Because I love babies so SO much!”

On Empathy:

One night I was crying, not just the streaming tears crying–it was the all-out loud sobbing crying. A gave me one of her dolls to cuddle and when my husband asked me what was wrong, she said “she wants Baby C,” something I had not explicitly said to her. She wiped my tears and patted my face. It was the most amazing thing to witness a 4 year old express such empathy for another human. I’m not sure that can be taught.

On Being “Thankful More Than Thankful Has Ever Been Thanked”:

I often gaze at A in absolute awe. She’s alive. I lay my hand on her chest to feel the rise and fall. I listen close to hear her breathe. I kiss her temple. How? How could I deliver one amazing child, alive, and yet my sweet baby was cruelly jerked away from my loving arms? But in the midst of “why me” “it’s not fair” and “F-you, Universe,” I  truly am “thankful to the nth degree” (credit: Angela Miller–and if you haven’t read her writings, DO IT NOW!)

 

What insights have you found in parenting after loss? Is there anything you find to be unique about parenting your living child? Or, if your loss was your first-born, what do you think is unique about your story?

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One Year Ago

I wrote this post last week but wanted to obtain permission from the people I referenced prior to posting, hence the delay.

Sept 6, 2017

One year ago today, I was scrolling through Facebook. I’m not even sure how I saw this particular Facebook post from a local photographer. She had posted a picture of a heartbroken mother, face buried in encircled arms over a tiny coffin. The text read:

“I know this page is known for being filled with gushing happiness and precious newborn goodness, and I love when people at the grocery store come up to me and say they subscribe to my page because the chubby babies always make their days…….but I feel like I need to share a little piece of the other side of my work, my non-profit project– Born To Fly. Not because I want to spread sadness, but because this mother wants a certain message spread loud and clear. And if you’re like me, it will make you hug your children a little tighter. My dear friend had to do something on Sunday that no mother should ever have to do. She buried her perfect, beautiful newborn daughter. I can’t even put into words the type of pain that was written all over her face that day, but this photo speaks a thousand words to me. It speaks deep sadness, but it also speaks a louder message….cherish.your.children.  Cherish every day you have with them. Cherish the good, the hard, and even the ugly of motherhood. Hug your babies a little tighter….if for nobody else, do it for my friend.”

I remember reading that message, looking at that picture, and thinking of my own children. My daughter, 3 years old, at the time, and the new, sesame seed-sized life growing inside me. Tears fell as I wrote this comment:

I don’t know you, but my heart breaks for you.  There is no word to describe a parent who loses a child. Sending healing thoughts to you and your loved ones. Your pictures are beautiful.

Who knew that 35 weeks later, I would find myself in the same devastating circumstance? Who knew that 35 weeks later that very same amazing photographer would enter my hospital room to capture my own tragic loss? She told me about a woman who had also experienced the heartbreak of a full-term stillbirth. Another mom who was surviving this nightmare. On May 10th, two days after I, myself, became a bereaved mother, this other mom reached out to me. Not until today did I make the connection that she was the same mother I offered condolences to one year ago.

I don’t know what, if anything, this means. Maybe it means nothing. Or maybe it means be nice to other people. Or we’re all connected. Or don’t take anything for granted. Or maybe it’s a reminder that we never know what the future holds.

Or that we are all vulnerable to heartbreak.

 

Neglected Tragedy

I’ve always been a fairly anxious person. I’m a type-A over-thinker, rarely taking risks. I thoroughly weigh both sides of a decision and research topics thoroughly.  During my first pregnancy I did a lot of reading. A lot. I know many mothers do so I’m uncertain if the amount of reading and research I did was “normal.” Regardless, there was me and Google at all hours of the day and night reading about group B strep, gestational diabetes, cesarean sections, inductions, vacuum extractions, forceps extractions, vaccines, vitamin K, and antibiotics in labor. I researched car seat safety, cribs and crib mattresses, toxins in disposable diapers, bed-sharing, baby gates, child safety products and daycares. I bought cordless blinds for the nursery. Once my daughter was rolling over, I moved her changing mat to the floor and removed her heavy dresser from her nursery. I breastfed for an atypical length of time. I kept her rear-facing in her car seat beyond the age of 3 years. Even now, at age 4, I won’t leave my daughter in the bathtub alone for more than 30 seconds. We don’t own guns. Every winter, my husband rolls his eyes when I give him the repeat lecture about puffy winter coats in the car seat. And years ago, when my husband and I were house hunting, I insisted that we not even consider a home with a swimming pool.

I’m not paranoid. I’m cautious. I’m careful.

And as I’ve said before, I took every precaution during both of my pregnancies.

As a society we are talking about a lot of important issues. We talk about not leaving children alone in hot cars. We talk about vaccinating. We talk about safe sleep. We talk about anchoring furniture to walls. We talk about baby gates. We talk about car seat safety. As a result, change is happening. Deaths and injuries are declining and I think this is amazing. For example, since the launch of the Back to Sleep Campaign in 1994, the rate of SIDS in the United States has decreased by 50%.

But we aren’t talking about stillbirth. The World Health Organization (WHO) calls this a neglected tragedy.

Annually, on average, in the United States:

Number of children who die from strangulation from window blind cords: 11

Number of children who die from furniture and televisions falling on them: 26

Number of children who die as a result of being left in a hot car: 37

Number of children who die from influenza: 37-171

Number of children who die from choking on food: 73

Number of babies who drown in bathtubs: 87

Number of children who die from accidental falls: 140

Number of people who die from listeriosis: 260

Number of children who die from accidental poisoning: 730

Number of people who die from toxoplasmosis: 750

Number of children who die from guns: 1,300

Number of sleep-related infant deaths: 4,000

Number of children under age 12 who die in car accidents: 9,000

Number of stillbirths (28+weeks gestation): 11,260

My point isn’t to minimize the seriousness of senseless tragedies. One dead child is one too many.  I HATE reading stories about children left in hot cars. Or dying in car accidents. Or from unsafe sleeping conditions. I hate it. And I hope you hate it too. But I also want you to hate the neglected tragedy of stillbirth. I want you to hate the fact that, worldwide, 2.6 million babies are stillborn each year. I want you to hate that stillbirth rates in the United Kingdom, France, and Austria are the worst among developed nations. I want you to hate that the stillbirth rate in the United States has not changed in the past 50 years. I want you to hate that the stillbirth rate for African-American women is DOUBLE than for women of other races. I want you to hate that the United States doesn’t value stillbirth research.

I want you to hate this neglected tragedy.

 Fresh Start

I have been busy purging my office at work–recycling papers I no longer need and boxing up my personal items because….I GOT A NEW JOB! If you have been following for a while, you know that I have struggled with my post-loss return to work. And if you are a new reader, welcome! In a nutshell, I work with moms and their babies AND I have a sociopath for a boss. A new job is very, VERY good news for me. I start next Tuesday.

It’s a strange feeling to be packing up my office after 8 ½ years. When I started my job, I was beginning a new (second) career as a registered dietitian, My first career, as a special education teacher, was short-lived (three years). When I began my career at WIC, I was the youngest on staff, excited and enthusiastic to be making a difference in the lives of families. But now I am bitter and disenchanted; and definitely not the youngest.  Truth be told, I have been looking for a new job for several years, due to the sociopathic boss, but there are few opportunities in my community.  Be it fate, or God (doubtful) or some other force of nature, a new opportunity has landed in my lap. My new supervisor is the exact opposite of sociopathic. Plus, she’s a fellow “loss mama,” part of the DBC–the club nobody wants to be in with the highest dues ever.

I get to keep my benefits and pay rate as an employee of the same municipality I am currently employeed. My paycheck comes out of a different federal grant and not only do I get a new (better, shinier) boss, I also get a bigger office.  Like I said, it’s a good thing.

In other news, I’ve clocked 93 hours since my return.  In hour 92, it happened. The moment I have been dreading since my return to work: 

Client: You had your baby!

Me: Uh, she died.

Client: *shocked look* Oh my gawd, I’m so sorry.

Me: Thank you. All I can do is move forward.

Client: I’m not sure if you remember, I had a miscarriage at 12 weeks. How far along were you?

Me: On my due date. Her heart had stopped.

Client: Anyway, I’ve been running out of formula so I’ve been giving [10 month old infant] whole milk.

And then there was this other mom. Her baby was born on May 4th, 4 days before mine. An adorable girl. I think she was adorable.  I tried my best not to look directly at this baby, this reminder of what my youngest daughter isn’t. I hid behind the woman (girl?) I’m training to replace me.  I tried to focus on walking her through the ridiculous software program I won’t miss. I tried to block out the sounds of the baby. I tried to dissociate myself from the angst. And I did it. I made it through those two very difficult scenarios. I didn’t fall apart until 4:33 when I was safe in my car. 

Four more days.

What was the worst experience you had telling someone about your loss?

Scattered Thoughts on Religion

Ever since my world crashed down around me nearly four months ago, I’ve spent a fair amount of time wondering about God. Does God exist? If so, where was God when my baby was dying? And why didn’t God save her? Is God punishing me? Does heaven exist? Is that where she is? Can she see me? Will I see her again? Does she know how much I love her? How much I miss her?

I recall the early days, the blackest of black days, the shades in our bedroom down 24/7. Me, curled in the fetal position in bed, clutching a small purple baby quilt the hospital gave us, repeating the mantra-like words that Jenny prays in the film Forrest Gump“Dear God, make me a bird so I can fly far, far away from here. Dear God, make me a bird so I can fly far, far away from here. Dear God, make me a bird so I can fly far, far away from here.” The emotional pain was so intense it crept into my heart, literally, and I felt as though somebody were wringing my heart like a wet washcloth. I finally understood the true meaning of the phrase broken heart.

The minister from my Unitarian Universalist church visited our home after our daughter died.  I recall asking him if I was being punished by God, and this man, whom I do not know well at all, said “a punishment for what? Why would God punish you?” Although I shrugged noncommittally, in my head I was thinking: punishment for abandoning my Christian faith,  for yelling at my 3 year old,  for resenting my pregnancy, for not fully appreciating all that my husband does for me…

I had a laundry list of sins deserving this pain. If something this horrific had happened to me, surely I did something to deserve it.

In the book When Bad Things Happen to Good People, Jewish rabbi Harold Kushner explores some of the universal questions that humans ask when tragedy strikes. I’ll admit, despite the recommendation that I read this book and the amazing reviews online, I had a difficult time trudging through it.  There is one particular passage that angered me. Kushner presents a hypothetical scenario in which an infant is born with a congenital heart defect. He outlines two possibilities for the child’s life: “If he were to die shortly after birth, his parents would go home saddened and depressed, wondering what might have been. But then they would begin to make the effort to put the loss behind them and look to the future.” He then goes on to paint a different outcome, in which the baby is saved by the advances of modern medicine, survives, and makes a life for himself until, at the age of 35, he dies. Kushner writes: “Now his death causes more than a few days of sadness. It is a shattering tragedy for his wife and children, and a profoundly saddening event for all the other people in his life.”

Let me repeat that: “now his death causes more than a few days of sadness.” A few days. I am on day one hundred eleven. 111 days. Of sadness. Of despair. Of crying. Of “shattering tragedy.” It is not only my husband and myself who have been affected. Our living daughter, our parents, my husband’s siblings and our friends and family have all been affected by the death of this tiny life.  It doesn’t feel right to tell a holy man to F-off.

Many people have offered prayers for me. I’ll take them. If prayers are futile, no harm done. But maybe, just maybe, there is an omniscient, omnipotent, omnipresent deity somewhere “listening” to prayers. Who am I to say? As to what these believers pray for, or how prayer works, I do not have an answer.  I recently was fortunate enough to get a new job, an exciting opportunity, to which the details are not suited for this post. I was sharing this news with a woman I know, who practices the Muslim faith, and she raised her arms in the air, looked to the sky, and sang praises to the God she worships. I guess? But why would God grant me a new job and not save my baby girl? It just doesn’t make sense.

My Christian upbringing implores me to believe in God, an afterlife, a heaven. But I am selfishly, on a daily basis, asking The Universe/ God/ Divine Spirit/ Fate/ myself:

Why did this happen to me?”

“Why did this happen to me?”

“Why did this happen to me?

 

Regardless of your religion, faith, or belief system, I would love to know what you believe regarding your beloved who has passed.  Do you pray? If so, for what do you pray? How, if at all, do you make sense of the nonsensical tragedy you are enduring?

 

Try Again

Confession: I used to be one of those ANNOYING people who questioned the family planning decisions of other people. If a couple was engaged, I would make no qualms in asking if they were planning to have children. Married–Why no kids yet? (Ironic considering my husband and I were married for 4 years before deciding we were ready to take the baby-making plunge). Only one child–when are you having the next? (Also ironic as I am an only child). Only girls–Aren’t you going to try for a boy? Only boys–Don’t you want a girl? Close spacing or really far spacing–Wow! That must have been a surprise! I cringe as I write this.

After I had no fertility challenges in conceiving my daughters, even going so far as to plan for an exact month of delivery both times, I would scoff when others complained about school start dates, the season of their child’s birthday, being 8 months pregnant in the heat of the summer, or the spacing of their children. In my head I would always think: “They should have planned THAT better!”

I’m going to stop right here and say: If I ever hurt you with my ignorance, I am truly sorry.

It was during my second pregnancy that I became irritated by these inquisitions. People asked whether my pregnancy was planned and if it would be my last baby. I may have been asked these questions during my first pregnancy but I don’t recall.

And then my baby ceased to breathe–but she didn’t cease to exist.

Last week, somebody said to me “I hope you’ll try again.” Tears sprang to my eyes. Try again?

Try (from Merriam-Webster): 1:  to make an attempt at: Try to conceive a baby; Try to deliver a living baby; Try not to kill a baby in-utero; Try for two living children

In the years that followed the birth of my first child, I never recall anybody asking “Will you try again for another baby?” The question was “Do you think you will have another child?” But now, it seems that the rest of the world has dismissed my youngest child as a failed attempt and that in order to remedy this failure, my husband and I should try again.

The death of my baby isn’t a tryout for a sports team. Her urn on my dresser doesn’t represent an F grade on a math exam. This isn’t the same as Rachel and Ross trying again after their “break.” A person tries to make bread or to play a piano piece without error; these are examples of attempting something after not succeeding.

IF (a BIG IF) my husband and I decide to become pregnant again, I don’t view it as trying. It’s not an attempt to replace our child who did not stay. Another pregnancy would be adding a third child to our family. This is difficult to wrap my head around because I only wanted two children. And I have two children. Therefore, I should be done having babies. And yet it’s not the same. Because my girls will not play together. My oldest will not play peek-a-boo with her baby sister. Or dress her in the white dress she so wanted to. My youngest will not copy her big sister and follow her constantly until she (the eldest) becomes irritated. They won’t pick berries from the bushes in our yard or swing on the swing-set together. They won’t build sand castles or wade in the surf. As hormonal teens, they won’t borrow each other’s clothes and makeup or fight over stupid sister stuff. They won’t be in each other’s weddings or hold each other’s babies. They won’t call each other with worry about their aging parents. None of this will happen between my two daughters because one of my daughters is dead.

Unless somebody shares their struggles, hopes, dreams, and personal life story with us, we have NO IDEA what they are enduring or why they are making the choices they are making (if choices at all). I know people who have purposely chosen not to have children. I know people who have struggled with fertility, crushed each month at the sight of ANOTHER negative pregnancy test. I know people who have chosen to have just one very loved child. I know people who have one child but wanted more, it just didn’t happen. I know people who have experienced the loss of a child and just could not bear to risk that heartache again. I know people who have adopted a child (the reasons vast and unique to each family).

If I could eliminate this proverb from our culture, I would rewrite it to say something like this:

If the plans and dreams in your mind and your heart result in the unexpected, it is okay to rewrite your future. You are still successful.

What’s the most off-putting or hurtful question you have heard regarding family planning? How have you rewritten your future story after your loss?

 100 Days and Stream of Consciousness

100 days. I have survived a nightmare for 100 days. 100 days ago I learned my baby’s heart stopped while mine did not. I have cried for 100 consecutive days.  100 days ago I thought I would cease to exist. But I didn’t. I haven’t. Yet.

And 365 days ago (or thereabouts) my baby was conceived (at home, not in a fertility clinic). TMI? I’d apologize for making you feel uncomfortable but I’m going to be uncomfortable every single day for the rest of my life.  For, like, 264 days or something like that (math isn’t my strength) my baby grew, safely housed within me. Then 100 days ago she died (well, probably 102 days ago).

The other day I mentioned to someone (while sobbing into their shoulder) that I fear this experience will make me a bitter person. She misunderstood and thought I said better person. No. I can’t imagine I’m a better person. I’m most certainly bitter.

I’ve started back to work–easing in with 4 hours per day. So far I’ve clocked 36 hours. I haven’t walked out. Yet. Though I’ve wanted to.  This morning I had a meeting with my supervisor and the human resources manager. My supervisor likes to pretend she cares about people. But she doesn’t. She cares about herself and her reputation. I could see an obvious relief on her face when I reassured her that I will be “ready” to resume my regular hours next week. I don’t know if that is actually true. Will I ever be ready?

On my way out of the building at noon, I ran into my intern from last summer, coming for an interview. We stopped to chat. I studied her face. I couldn’t tell if she knew. 

“I’m not sure if you heard, I lost my baby.” (Geeze, there it is…lost…where did she go? Off with my red Marmot jacket?)

“Yes, I didn’t want to say anything unless you did. I’m really sorry about that.”

Better to lay it out there. Otherwise it’s just the obviously uncomfortable elephant in the room.

Back in July, my husband and I met with a perinatologist. I won’t go into all the boring medical details, only to say that I FINALLY connected with her last week by phone. (She’s a big-shot CEO at the hospital, I think she just consults with Maternal-Fetal Medicine to keep her license current). Final verdict: massive fetomaternal hemorrhage (FMH). Which is what was initially suspected but now it’s official. As to what caused it? They have no idea. As this doctor said “I’d expect this type of outcome had you been abusing large amounts of cocaine….” (In case you’re wondering, I’m not a coke addict).  I’ll  direct you over to fellow “Loss Mama” Vanessa for the details on this very rare medical condition. I can’t say it better than her: FMH truly can go to hell.

I fired my first therapist and am now on my second. Anyway, this new one has been treating me for trauma using a technique called EMDR (Eye Movement Desensitization and Reprocessing). We’ve had four sessions so far. Last week I mentioned that I wasn’t sure if it was working. She pulled out her handwritten notes and studied my scale ratings. “Well, at your first session, your distress level was a 10 and last time you were at a 6 so that proves it’s helping.” How does she know it’s the EMDR helping and not the passage of time?

This Thursday is DBC (Dead Baby Club). That isn’t really what it’s called. Obviously. I still have a handful of people who I haven’t scared away. People I knew before my loss who aren’t in the DBC. But now that I’m in the DBC I feel most comfortable around other people who are surviving. I’m only 100 days in.  Some of them have been DBC members for years. I can’t even fathom how I will feel next week let alone in months or years. Or decades.

So I’ve survived 100 days. In the next 100 days I will resume my full-time working hours. My daughter will start pre-kindergarten. Leaves will begin to change color and fall from the trees. I will be participating in a fundraising walk in October for National Pregnancy and Infant Loss Awareness Month. We’ll go to my favorite fall fair (no rides, just agriculture and hippies). We’ll head to Nashville for a wedding. My daughter will finalize her Halloween costume (Rapunzel? Pony? Will keep you posted). We’ll begin to think about winter because here, where we are in New England, we could potentially get snow in early November. And we’ll pack for our trip to Florida because 100 days from now takes us right to Thanksgiving. 

100 days.