Christmas Conundrum

The conundrum being this: how do I include my absent (dead) baby in my holiday traditions? One of the nagging topics in my head has been honoring Corva at Christmas. Obviously, I do not have a living 7 ½ month old baby in my home to open gifts (or have her older sister open gifts for her). Initially I thought I would purchase gifts for Corva from Santa. Then I vetoed that idea–what would we do with the gifts? Somehow, I needed to be able to give gifts to someone in honor of Corva.

My parents never honored St. Nicholas DayThat is, Santa came to our house only on Christmas Eve, December 24th. However, I did have a childhood friend who had a St. Nick visit on December 5th, and it was a tradition during my husband’s childhood, so hey, why not? (Coincidentally? Both my childhood friend and my husband were raised in Catholic homes. Is this a Catholic tradition?)

This year St. Nick came to our house on December 5th (in actuality, a hungover mommy awoke sometime around 1 am on December 6th and pulled the gift bag from the spare room closet). There were small gifts in the bag: chapstick, fruit snacks, Christmas socks. And a card:

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Several days later, I sought out the Salvation Army table at my local mall and found this tag, for a baby girl, 8 months old. Just about the same age Corva would be, had she lived.

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This evening, my living daughter and I went to TJ Maxx and acquired our loot:
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I hope that I am instilling something good in my living daughter, not something desperate and depressing, though I often wonder. I will add to this gift, but I am satisfied that Astoria was able to come with me to choose some toys and books for this baby–toys and books that she would have chosen for her baby sister.


How do you honor your deceased loved one during the winter holiday season? If you are newly bereaved, has it been a struggle to identify new traditions for your family?

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Not Ready to Make Nice

The other morning, as my daughter and I were heading down the garage steps to get into the Jeep, she stopped abruptly and plopped herself on the top step, crying. “What’s wrong?” I asked. “You stepped on me!” she wailed. I did? I didn’t think I was anywhere near her but perhaps I did step on the heel of her shoe. I didn’t argue with her because her perception was that I had hurt her, even if in my mind I wasn’t near her at all. Instead, I sat down next to her and gathered her in my arms. “I am so sorry, I did not mean to hurt you. Will you forgive me?” And then it occurred to me: “Do you know what forgive means?”

These are my most candid moments as a parent–the ones where I really have to stop and think about something in order to carefully explain it in 4-year-old terms. What does it mean to forgive?

I explained that when we forgive someone, we still love them even if they hurt us.

Okay, it’s not the most complete definition, but it was the best I could devise on the spot with minimal coffee.

But really, forgiveness is much more complex. For me, related to the death of my baby, forgiveness is muddled with anger, betrayal, sadness, and guilt. I’m angry with my midwife, I’m angry with myself, I’m angry with the universe.

FORGIVENESS:

“A conscious, deliberate decision to release feelings of resentment or vengeance toward a person or group who has harmed you, regardless of whether they actually deserve your forgiveness.”

Wow. How does a person even start? To forgive my midwife. To forgive myself. To forgive the situation that nobody can change. 

Why does it matter? Why can’t I live the rest of my life harboring this guilt, anger, and bitterness? Advice about forgiveness abounds. We hear it from psychologists, poets, religious leaders and our mothers.


But all of these feel-good sunshiny quotes I found online–I say “Eff you.”

My baby died.

My heart hurts.

I just cannot make myself forgive that easily.

I’m still mad as hell.


Is there anyone you haven’t been able to forgive? Have any of you been able to forgive someone without receiving an apology? Has anyone received an apology but still wasn’t able to forgive that person?

Never Safe

Thanksgiving brings some bittersweet memories. Twice, now, I have been pregnant at Thanksgiving time. In 2012, I was 14 weeks pregnant; my husband and I hosted Thanksgiving at our house, my in-laws flying in from Ohio. In 2016 I was 16 weeks pregnant, my husband, daughter and myself flew to Ohio; I puked for the first time on an airplane on our return trip. Both times we announced our pregnancy to family–we were ‘safe’, into the second trimester.

Recently, I saw a post on social media regarding a pregnant woman going past her due date.  The context of the post was over concern that by going past her due date, the baby was in danger of dying. I don’t want to write a blog post on the science of stillbirth risk and gestational age, or the risk of neonatal death to prematurity. Not today, anyway. My personal experience is that my first daughter was born crying and breathing past her due date (41 weeks 1 day according to one due date, 40 weeks 5 days according to the other due date). My second daughter was born silent on her due date, though testing indicated that she likely passed at 39 weeks 5 days. No, today, I want to address the fact that as parents, we are never safe from child loss. Never.

The Coleman family lost their little girl Heidi, just a toddler, drowned in a pond in 1976. 

This mother lost her 12-year-old son while he was playing in a rainstorm. 

Carol Kearns lost her  her 7-year-old daughter to a rogue wave on the Oregon Coast (now I understand my mom’s paranoia). 

Twenty 6 and 7-year-old children lost their lives at Sandy Hook Elementary School in 2012.

Anne Frank was 15 years old, her sister Margot, 19, when they died of typhus in a German concentration camp, leaving their father bereaved.

My uncle lost his only daughter when she was 29, due to seizure (my aunt had passed prior, narrowly escaping the heartbreak of becoming a bereaved parent).

Sixteen years ago this month, a college friend was killed in a drunk-driving crash. She was 20 years old.

The point being, there is no safe window. It’s not once you reach the second trimester of pregnancy. It’s not once the baby is delivered, red and crying. It’s not after the baby reaches 3 months, 6 months, or 1 year. It isn’t at age 18 or 21 or 35. These stories ignite the anxious fire in the pit of my stomach.

The fragility of life has never been so apparent to me than it is now.


 

Would She?

It has been six months; six months since I delivered my unbreathing baby. I can’t help but constantly think how my life would be different had she lived. She would still be nursing (likely–I nursed A for….awhile). Would she tug my hair while nursing? Would she like avocado? What would she think of a cup? Would she be rolling across the living room rug? Army crawling? Would she watch my hands carefully as I signed “more”, “cat”, “mama”, “daddy”, “sister”? Would her eyes twinkle with interest while her older sister showed her pictures in a book? Would she have used a pacifier?

How would I be filling my days? Would I be at home with C, occupied with cloth diaper-washing and trips to the library and park, attempting to squeeze in a nap before having to pick-up A from pre-k? Or would I be working? Would I be in this new job? Or would I have stuck with my old job? Would I be trying to work full-time while parenting a baby and a four-year-old? Would I be pulling my hair out, exhausted, not realizing how fortunate I was to have two living children? If I wasn’t working, would money be tight? Would I be budgeting carefully for the holidays?

I never had a chance to live this imagined life. I remember, in the initial shock of the first few days, commenting to my midwife “….but I had plans…” I remember her, gently asking “what kind of plans?”. Even then I remember thinking: What a dumb question. What kind of plans? What does she mean what kind of plans?

When a woman is pregnant (and my midwife was pregnant with her 4th child), she makes plans. When those plans are buried and cremated with her baby, the ashes turn into what-ifs? and would-(s)hes?.

What if she lived? Would she look like her sister?

Does she know she is loved?


What what-ifs? and would-(s)hes? replay through your mind?

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(My oldest daughter, A, Oct-Dec 2013–5 months-7 months)

 

Dear Friend

I know I am living–surviving really–your worst nightmare. You know, the one when your baby dies; when the doctor looks you in the eye and confirms what your gut is already screaming “there is no heartbeat.”  That’s what they say, typically, because saying “your baby is dead” sounds callous, though it is the truth.

But your baby didn’t die. You’re not living the nightmare called child loss. Your baby is snuggled on your chest, bum in the air, drowsy from nursing. Your baby is waking you, like clock-work, at 2:00 am every 24 hours. Your baby is dozing in your wrap while you read a book with your older child.

I couldn’t go to your baby shower. I couldn’t watch you unwrap gifts in your pregnancy glory, listen to the guests ooh and aah over all the tiny clothes. Once you had him, I couldn’t hold him. I don’t want to hold your baby–the last baby I held was my own, the one who never opened her eyes, whose tiny hand never clutched my finger. I cannot listen to you complain about sleepless nights or sore nipples, or returning to work after maternity leave. What I wouldn’t give to have those problems. Instead, I’m on Day 180 of crying.

So even though you’ve done nothing, you’ve done everything. You did what I could not do. You had a baby and you were able to bring your baby home, alive. And that is why our friendship will never be the same again. I did not want to change. I did not choose for my baby to die.

This is just me, surviving.

CYG Day 25: Indestructible Heart

I once had a job, not long ago, working directly with pregnant and postpartum moms, and their children. Occasionally, my coworker, who frequently combed the obituaries, would bring in to work a tattered clipping for a baby or small child. “One of ours,” she’d say. My coworkers and I would huddle in our meeting space trying to fathom what could have happened. Sometimes, I could identify what likely happened: “Oh, that baby was a 24 weeker,” or “heart defect.” (I followed all the high risk cases). Occasionally, a staff member would offer up that the mother had risk factors for SIDS. Or there had been a house fire or car accident.  Other times we just didn’t have a clue.

I would think (and sometimes say aloud), If my child died, I would die too,* or be admitted to a mental hospital.

But when my child’s heart stopped, mine kept on beating, though the physical ache was real. Checking in to a mental hospital would only separate me from my husband and living daughter; it wouldn’t bring back my baby.

Worldwide, across cultures, people endure unfathomable tragedies. They survive, and they build meaningful and joyful lives despite trauma.  This is resilience. In Option B Sandberg and Grant discuss the three P’s (coined by Martin Sligman) which prevent someone from reclaiming their life after trauma.

Personalization: Self-blame. It’s my fault that my baby died. If only I had paid closer attention to her movements. If only I had sought more ultrasounds.

Pervasiveness: When tragedy infiltrates into every aspect of our life. I failed to keep my baby alive, therefore I’m not a good mom to my living child. I’m not a good wife. I’m not a good employee. I’m not a good friend.

Permanence: Feeling as though the severity of the trauma will never end. I am never going to feel better. For the rest of my living days, I will always be the mother of a dead baby and there is nothing I can do to change that fact.

I am still working on the three Ps. I’m not certain that my heart is truly indestructible. It feels quite shattered, actually.

*When I say I thought I would die, I’m not referring to suicide. I’m referring to the belief that I would stop existing if my child died. If you are contemplating suicide, please know that there is help available. For countries outside the United States, click here.


What do you think about the three P’s? Have you built resilience? Is your heart indestructible?

Therapy: Part 2

With the challenges I faced, I knew I couldn’t be alone in my therapy frustrations. I conducted an informal survey through Facebook, polling 40 women who had experienced pregnancy loss after 20 weeks gestation. (In actuality, 45 women completed the survey but in order to view the last 5 surveys, I would have to “upgrade” my plan for $77, um, no thanks). There were ten questions in total.  I’m not a social scientist and haven’t conducted many surveys or polls so this wasn’t by any means professional or scientific. And of course a 40-person sample size is much too small to make conclusions, so remember, this was, you know, a blog experiment.

The majority of those polled live in the United States, followed by the United Kingdom and Canada; Australia and New Zealand each had one response. The “Other” response was from the Netherlands.

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Most of those who responded have counseling as a covered service under their health insurance plan.

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Besides grief and trauma, some polled sought counseling from therapists specializing in perinatal loss and marriage (documented under “other”).

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Of those polled, 71.8% have seen a counselor; the “other” category comprised four responses: 5 counselors, 6 counselors, “I saw a few one time but didn’t like any of them.” “first meeting this week”.

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Sixty-four percent (25 people) of those polled are not currently in counseling.  (The “other” responses were those who are anticipating starting counseling in the very near future).

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Of those twenty-five, thirteen people (52%) gave responses related to the difficulty of therapy. Some comments include:

I felt they [the therapist] wouldn’t be able to understand what I was going though and I’m not very good at sharing my thoughts. I also thought they may think I was unsuitable to have another baby.

I found that I was unable to be truthful with my counselor. The one time I saw her, I pretended to be okay and gave all the right answers. I wish I didn’t. I wish that she had pushed me harder rather than just seeming to accept everything I said… I mean, I showed up to talk about my baby’s stillbirth, she should have guessed there was ‘more’ to what I was saying.

I am not yet ready to do some things that I know they [the counselor] will want me to work through. As soon as I feel [that] I am in a spot where I am ready to work through the grief than, I will go.

There were five responses (20%) that pertained to a lack of connection with the therapist. One comment, which unfortunately didn’t surprise me was I couldn’t find one that wasn’t rude or judgmental.” Another mom reports “the counselors that my insurance covered were not specialized for my issues, and mostly were just inept for my emotional/psych needs.” (Again, not surprising).

Three moms were still looking for a counselor, one mom saying, “I don’t know where to start. I don’t know how to find someone. Everyone seems to think I should be moving on already.”

Six moms responded that they are no longer in counseling because they felt their goals were completed. Two of those six were pursuing support elsewhere. Six of the forty polled mentioned other support (either instead of or in addition to) such as in-person support groups, online social media support, family and friends.

I felt like my counselor gave me good advice and tools to work from. As far as actually processing my grief, it was more beneficial for me to speak with trusted mentors and family.

I felt I got what I needed from my counseling experience and I am at a point in my grief that I am able to cope without counseling.

I saw a private counselor within a week of losing my daughter at 38 weeks, but had to relocate 3 months later to an area where that wasn’t available. Private counseling is cost prohibitive long-term so I will be starting with the public women’s mental health team now that I’m back in an area that has that service available.

Two responses related to cost, the one above and this one:

[I] was told by [the] mental health team to wait 4-6 months or pay for private counseling.

Other comments

I have been going to pregnancy and infant loss support groups for the time being and that has been helpful. But not one-on-one counseling yet.

I wish there were more low cost, easily accessible options for quality counseling specific to the grief process as it applies to my stillbirth loss.

I do wish I had sought counseling sooner (I went about 9 months after my loss). I may still seek counseling as I’m still not feeling okay 1 year out.

I struggled with knowing she didn’t truly know how I felt.

The counselors made it so much worse, really so mean.

I’m not sure I would have been able to grieve appropriately if I didn’t have that support. It gave me perspective, direction, and helped me keep moving forward. It helped reduce the guilt and isolation I was feeling.

My counselor helped make my thoughts/feelings validated when at times I thought there was something wrong with me. She also really helped my husband and I learn to communicate better.

Finding therapists that specialize in pregnancy loss was near impossible. I’ve tried several times and have never really had any luck.

How I would have changed my poll

I don’t think it was important to know the week gestation of infant loss (I didn’t even include the graphic); more important, would be to know how far out the mother is from her loss. One question I asked was terrible: “It was easy to find a counselor post-loss” with a 1-5 scale rating (1= strongly disagree, 5=strongly agree). I couldn’t draw any conclusions from these responses. What’s the definition of “easy?” Finding a counselor in general or the right counselor? It was too broad. I think what I was looking for was how people found their counselor or how many counselors did they go through before finding the right counselor. Or maybe if their hospital or ob-gyn/midwife gave them a list of bereavement or perinatal loss counselors.

So much of what these women shared I could really relate to. Basically, as a society, not only are we failing families by not implementing time and money into stillbirth research, but we are failing mothers. We are failing to provide the mental health resources they need in order to move forward (NOT “move on”) and gain the tools needed to function in life. I echo what some of these moms said: finding the right counselor for pregnancy loss is extremely difficult. A grief counselor may not cut it–this is a very different type of grief, often involving trauma. A counselor who specializes in trauma and PTSD may actually be better-suited to help a mom who has experienced a pregnancy loss (but may not have the education and experience to help with the grieving process). There are therapists who specialize in perinatal loss, but they seem to be in larger metropolitan areas–there aren’t any in my rural New England state (that I could find). The fact that there aren’t more therapists specializing in perinatal loss is baffling to me, when we look at the numbers.

In the United States annually:

  • 500,000 pregnancies end before 19 weeks
  • 26,000 pregnancies end after 20 weeks
  • 19,000 babies are born alive but die within the first month

In the United Kingdom, annually

Clearly, there is a need for qualified perinatal loss therapists. So, a family has experienced a devastating pregnancy loss and wants to pursue counseling. How would one go about finding an experienced and knowledgeable therapist? Start here.


Are you a therapist? Do you specialize in perinatal loss counseling? Would you consider specialized training in perinatal loss counseling?

If you have questions about the poll, please feel free to ask!