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!

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Therapy: Part 1

In most Western countries, our healthcare focuses on the physical–we comply with the recommendations for annual physical exams, biannual dental cleanings, and yearly eye exams.

But we neglect our mental health. The times I’ve sought counseling were for a specific purpose and usually the event was abrupt, leaving me little time to thoroughly investigate who might be a good “mental health match” for me.

My husband is the one who found our first counselor post-loss. Because he was aware of my history of depression, and concerned about the effect of our baby’s death on our marriage,  he sought recommendations from coworker and found Meryl (not her real name). Meryl has a PhD in clinical psychology from Ohio University. She completed a predoctoral internship at Harvard. (Impressive). Her website maintains that she has been in practice for twenty years and specializes in stress/trauma and PTSD, anxiety and depression, and women’s issues.

Our first session with Meryl was June 8, a bit over 4 weeks post-loss but exactly one month from the death, delivery, and birth of my youngest daughter. (The delay in securing an appointment sooner, having to do with the fact that Meryl practices part-time and also had been on vacation). Meryl had been briefed on the trauma, yet she was clearly uncomfortable with the topic. She wasn’t familiar with the language around pregnancy loss, she never used our baby’s name, and at times, she seemed to be looking my way for direction on how to counsel me.  She couldn’t seem to identify what I needed (and I certainly didn’t know).  Her ideas about helping me ease back to work were ridiculous.  My husband and I met with Meryl twice as a couple and I met with her three times individually, then never called her back. Meryl didn’t bill insurance so we paid upwards of $200 (USD) per counseling session.

Now what?

Several people had recommended that I seek a therapist certified in a type of  treatment called EMDR . I searched on the Psychology Today website and another therapist-search site specific to the state I live in. I found this process to be frustrating. On the Psychology Today website I could filter by town/zip code, insurance, treatment modality (cognitive behavior therapy, EMDR, trauma-focused, hypnotherapy–among others) and issue (grief, depression, trauma and PTSD, women’s issues–among others). I WISH there was one titled “perinatal loss”. Even a quick google search “perinatal loss stillbirth name of state” got me nothing. So I went with trauma/PTSD and grief.

That’s how I found Mindi, my second therapist. Her credentials weren’t as impressive as Meryl’s, but at this point I had little faith in credentials. Mindi is an LCSW with an additional credential in EMDR therapy from Boston University. She has been practicing as a therapist for over ten years. And great news–she did bill my insurance and my copay per session was $6 and some odd-cents (USD).

I had high hopes for Mindi. Our first session was 9 weeks post-loss and it seemed like she was going to be the counselor to help me move through this.  We met for a total of eight sessions, our final session ending a little over 18 weeks post-loss. Five of the eight sessions involved EMDR therapy. And then I felt like I had run out of things to talk about. We’d covered the initial trauma of the loss, my transition to my new job, parenting a living child post-loss, triggers, some coping mechanisms and tools….what else was there? Plus, there were the sad pitying puppy-dog eyes and pouty lip that frequently dawned Mindi’s face when I shared a particularly heart-breaking thought. While the EMDR seemed to help (I think?) initially, I couldn’t foresee myself doing much more of it. (EMDR involves reliving the trauma). So we concluded our counseling with the understanding that I could call for a future appointment if needed. (I won’t call her). (One of the interesting things about Mindi’s location was that her office was upstairs from a bridal boutique. Everytime I went, I wondered if someone seeking counseling post-divorce would find this to be a trigger).

Am I better? Well, I suppose I am better than I was on May 9th. Am I well? Cured? No longer in need of therapy? I don’t know. I still cry daily. But maybe this is how it will be for the rest of my life. The most difficult thing about counseling for me, as an introvert, is expressing myself verbally. This was one clear advantage of the EMDR therapy.  I didn’t need to explain anything to my therapist. She didn’t need to have my life story or know every detail of the trauma. By default, the modality of EMDR took care of it. What would therapy for introverts look like? I think a written journal, email sessions, better yet–here’s the link to my blog–read it and know everything I’m thinking, then help me.

I knew I couldn’t be the only person with this frustration, so I decided to complete an informal poll.


Did you try therapy? What was great? What was awful?

Remember Your Strength 

Capture Your Grief Day 3: Meaningful Mantra

#CaptureYourGrief2017 #WhatHealsYou

My friend, Amanda, gifted me with this gorgeous bracelet, made at Saucy Jewelry. Engraved inside: “Remember Your Strength”. That’s been my mantra since I got it. I wear it everyday. And when things feel too difficult, I touch my bracelet, close my eyes, and tell myself “Remember Your Strength. Corva Florence.”

What’s your mantra? Do you have an ‘anchor’ to ground you? 

Remembering Babies, Gone Too Soon

Capture Your Grief Day 1: Sunrise Blessing

In 1988, then-President Ronald Reagan declared October Pregnancy and Infant Loss Awareness Month, saying “When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, there isn’t a word to describe them. This month recognizes the loss so many parents experience across the United States and around the world. It is also meant to inform and provide resources for parents who have lost children due to miscarriage, ectopic pregnancy, molar pregnancy, stillbirths, birth defects, SIDS, and other causes.”

Like other awareness campaigns (think “pink” for breast cancer, “purple” for Alzheimer’s and “red” for HIV/AIDS), the PAIL community uses a blue and pink ribbon as a symbol to heighten awareness. Pregnancy and Infant Loss Day (October 15th) is recognized in the U.S., as well as five additional countries.

In his speech, Reagan highlighted 3 goals: recognition of baby loss, information for parents, and resources for parents. However, something vital is missing: raising awareness to the public. Before I was a statistic I was only peripherally aware of PAIL Month. Sure, I’d seen blue and pink ribbons on Facebook profiles, but I didn’t truly understand. Now I am that parent. I frequently remind others in the loss community that “people are uncomfortable with death, but they are exponentially uncomfortable with dead babies.”  The death of a baby is shocking and unanticipated–babies are not supposed to die.

If you are someone who has experienced the loss of a baby, I challenge you to speak up in a way that feels right to you. This could be using a Facebook profile frame for PAIL month, writing a note to a friend, speaking up during a conversation about loss, or commenting on a Facebook post. And if you haven’t personally experienced the loss of a baby, you know someone who has, even if you don’t (yet) know who in your life that person is. So if they bring it up, be ready.

On October 14th, I will be walking in the 2017 Empty Arms Remembrance Walk for my Baby C and all babies gone too soon. I would encourage everyone to check this site to find a local event to offer your support.

If nobody speaks up, then nobody knows.


Before your loss, how aware were you of Pregnancy and Infant Loss Awareness Month/Day. How, if at all, will you commemorate your baby this month?

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?

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.

 

 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?