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.

pie-chart (7)

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

pie-chart (2)

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

pie-chart (5)

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”.

pie-chart (8)

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? 

On Friendship 

ACT 1

Today a coworker, let’s call her Fran, came into work with her newborn. I saw her down the hall showing him off to two other coworkers. I quickly slipped into my office and closed the door. No way was I going to handle that well. Later, a friend told me that Fran had been looking for me specifically. Eek.

The thing is, I feel like Fran should know better. She’s the one who wanted my address so she could send me an invitation to her baby shower. (Clue #1: no response to the text). She’s also someone who rescued me from taking baby appointments during the 22 days I worked at WIC post-loss. (Clue #2: me bawling in my office after seeing a baby). Later, this afternoon I noticed an envelope in the box on my office door. Thinking it was from someone else, I opened it. A thank you card. With a  photo collage postcard of her living baby. Pre-loss, I magneted photo cards like this onto our fridge.   Uh-uh. No way. I tried to pawn off the card on my living daughter but she had her own choice words to say about that baby. What the hell am I supposed to do with this card?

ACT 2

Six weeks after my loss, a friend, let’s call her Holly, phoned to tell me she is pregnant. (A rough way to receive such news, as I desperately held back tears while congratulating her). And even though I have known this woman for nine years, and even though she was one of the first people to reach out to me in my grief and offer her support, I have drawn back from her. I have stopped responding to her texts. I have neglected to return her phone calls. Last week I had a meeting in the building where she works and I couldn’t bring myself to stop by her office. 

Fran and Holly didn’t dump in or say hurtful platitudes. All they did was get pregnant and deliver (or expect to deliver) a living baby. However, I selfishly don’t want anything to do with either of these people. I don’t want to see them or talk to them and I CERTAINLY don’t want to see their babies.  This is incredibly unfair to both of them. 

Then again, it is incredibly astronomically unfair that my baby died.


In the midst of your grief, did you lose friends as a result of circumstance? Were the friendships eventually mended?


 

The Ring Theory 

When tragedy hits, people often don’t know what to say or do. Some grief-stricken individuals will reassure others that saying something is better than saying nothing. I don’t agree with this, although I can understand the good intentions behind it. I think what people mean when they say “It’s better to say something, even the wrong thing, than nothing at all” is that they wish for others to acknowledge their loss, they wish for their loved one to be remembered and they don’t want that awkward “elephant in the room” feeling. However, saying the wrong thing can be devastating, even going so far as to destroy relationships. One of the best resources on this topic that I have found is this one. To summarize the ring theory “in a nutshell”: comfort in, dump out. When I apply this theory to my own situation, I place myself in the middle. Directly around me is my husband and living daughter. Surrounding them, our parents, then close friends and family, and so-on. The most important part of the theory is this:

“The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, “Life is unfair” and “Why me?” That’s the one payoff for being in the center ring. Everyone else can say those things too, but only to people in larger rings.”

I had a few people “dump in” on me, but only once did it affect me enough to destroy a relationship.

A pregnant friend (and my hired home birth midwife) disclosed to me that she had been having panic attacks since my delivery. She told me that her partner, the father of her baby, was asking her to cease communicating with me as he was concerned that the stress of my situation was affecting their baby. She was having panic attacks? My daughter died. She died. In my body. My “friend” also told me that she was grieving for my baby. She was grieving for my baby? Yes, it was valid for her to feel this way (I realize this now). BUT it was absolutely NOT ok for her to “dump in” on me.

I felt guilty. If something happened to her baby, it would be my fault. I had ruined her life by delivering a stillborn baby. I had caused her undue stress. Her stress was going to harm her baby and it would be my fault.  These are the irrational thoughts that consume someone who is grieving.

And I felt (still feel) angry. Extremely angry. Like, irrationally angry.

Crazy angry.

Our communication ended, along with our friendship.

Before our friendship ended, this is what she told me: “So much love to you, my friend. I’m holding you all in my heart every moment and I will walk with you as you put one foot in front of the other. {{{hug}}}”

That was a lie. A promise she could not keep.

Comfort IN, dump OUT.


Did you ever experience someone “dumping in” on you during your grief? How did you handle it? Did it affect your relationship?


 

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.