Group No More

E and I attended our first bereaved parents’ support group a couple weeks after A died. I would have gone sooner but that was the next scheduled group. Before I was discharged from the hospital I knew I wanted to try the local support groups. I was desperate to try anything – the books, the groups, the blogs – whatever stillbirth and babyloss information I could get.

For more than three years I have been attending babyloss support group. In the beginning, it couldn’t come soon enough. I wished that they were every single week. I craved the solidarity and the chance to talk about my son. As time wore on, the grief was less debilitating, less consuming on a daily basis and so I’d go to group as needed instead of every month. I could always count on that second Tuesday of the month if I was feeling especially sorrowful or when the holidays rolled around or whenever I needed a little extra support.

Recently, the facilitator who runs what was the most popular (by attendance) babyloss support group informed me that group was on a hiatus. Over the last year attendance at monthly support group had dropped significantly. Lately, there were only 2-3 people showing up, and sometimes, just one. The facilitator feels that that few of people doesn’t constitute a group because if someone did not want to talk, they would feel pressure to.

The facilitator has talked to other local support group leaders and even reached out to colleagues in other states; apparently this is a national issue one that isn’t restricted to babyloss support groups. The new trend, according to her, is digital support.

I have found tremendous support with the online babyloss community. I started this blog three months after A died and had been reading other blogs within a day of becoming a babyloss mother. The validation, camaraderie and support of all of you who read and write out here on the internet is invaluable. But it isn’t the same as face-to-face meetings. For me, there is value in both online support and in-person support group. That’s why I’ve regularly utilized both for the last 3+ years.

One of the benefits of support group is that I get to tell A’s story every time I go. And, to this day, I still breakdown while recounting the short life of our firstborn. By now, I am considered a “veteran” at group. Most of the other parents who are there are much earlier in their grief journey. I respect this important role as a “grief elder.” These parents are so freshly shattered and I can immediately go back to the place myself. I can empathize with the emotions, the challenges, the shock. When I walk out of group now, I don’t feel the relief that I once felt, but it is rewarding. I belong to the local bereaved community and also to the online community. And just like the women who have come before me, those I’ve met in person and those who I communicate with online, I want to be here for the unfortunate families who come after me.

So I am disappointed and disheartened that our local group is no more. I feel it is a disservice to the community. The facilitator is considering starting a few different Facebook groups (early loss, later loss/stillbirth, subsequent pregnancy, etc.) but it won’t be the same. I respect that not every person gets something out of support group. But I know I do. I wish there was more I could do to rally these broken parents and encourage them to drag themselves out of their isolation and to group. Truth is, so does the facilitator and she gets paid to do that, yet the numbers still dwindled and now the future of face-to-face support group is up in the air.

Bittersweet

After A was stillborn, we were fortunate enough to receive outreach from several local support groups and babylost organizations. Through one such organization I befriended a woman whose firstborn child was born still thirteen years ago at 38 weeks from a supposed cord accident, though cause of death was never conclusively decided. She got pregnant soon after her son’s birth and just four days after the first anniversary of his death she gave birth to a living son. She went on to have one more subsequent living son a couple years later.

We really seem to get each other and I have leaned on her a few times so far during this subsequent pregnancy. Her insight is that her son’s birthday is bittersweet. Each year she is sad that her eldest is not here but then a few days later she celebrates her “miracle” baby who wouldn’t exist if his older brother had not died.

I’m not quite to bittersweet yet, although I do feel grateful for Dragon and this new pregnancy even in the midst of my continued angst of missing A. But for me they are two distinct emotional experiences – I feel angry, sorrowful and severe pain because I yearn for my son, and I feel distinctly excited and thankful for this new life kicking me in the ribs. Perhaps with time, like my friend, I too will know how to hold two contrary truths together in my heart simultaneously, to find holidays and special occasions bittersweet.

She tells me that life is wonderful since her second son arrived and that she thinks it will be wonderful for me too one day. 

Double Agent

I am a double agent leading two different lives. Just as I did not willingly move to Griefland, I did not knowingly become a double agent. It was all quite surreptitious, as these sorts of things tend to be.

To most of the world I am a young woman newly set in the adult responsibilities of marriage and home ownership. They see me perform necessary daily tasks without flagging. I purchase and haul groceries. I make small talk with the neighbors. I weed the garden. I ride my bicycle to the office. I chit chat with co-workers and volunteer to bring a dish to the potluck. For all intents and purposes, not much has changed in their eyes.

My alternate life is stormy and sullen. I struggle to accomplish simple activities like laundry or watering the houseplants. Nerves wracked, I teeter on the edge of meltdown constantly. Treacherous mood swings wear me down. I cry easily and feel hollow inside.

In the outside world my son is rarely mentioned. There are those who do not know he ever existed. There are those who know of him but still do not bring him up. In my dark, cloaked life, I commune with other babylost families. We speak of our children frequently and swap stories about traversing the impossible terrain of grief. I see a few of them at support group or in my community but most live in the supernatural world of the internet. Here we gather like pagans in the woods on all Hallows’ Eve to perform our rituals, memorialize our children and remember, always remember. Here, I am free to be open and honest. Here I do not need to put out niceties or think twice before I answer the question, "How are you doing?"

Obsessively, I check and read babyloss blogs, starved for the connection to others surviving this horrible nightmare. I seek the reassurance and validation that what I am experiencing is not insanity. I seek the camaraderie and companionship of those knowing souls. But wait, the phone rings. I stifle my sniffles and put on my real world face. Pull it together quickly and answer the telephone pulled immediately back to the world where I am supposedly "fine."

This double agent business is exhausting.

Cloudy with a Chance of Tears

The weather in Griefland lately has been mostly gray skies.  I don’t want to do anything. I prefer to curl up on the couch and bide my time until it’s time for bed. This is similar to the strategy I used in the early weeks after A died. Just get through this day.

Isolation is most appealing to me and I prefer to hide out in my house than spend time with anyone other than my husband. Poor guy, he tries to encourage me to at least come outside and enjoy the summer sunshine. But I just want to burrow inside.

And the crying. I am so weepy lately. Any little thing sets it off, but mostly it is the onslaught of thoughts and memories of A. For some reason, my brain keeps replaying the events surrounding A’s birth over and over and over again.

This weather pattern has been holding steady over Griefland for weeks now. What does it mean? Am I depressed? Is this normal grieving? Should I do something?

I attended support group a week or two ago for the first time in months. It wasn’t very helpful to me because there was a couple present who had just experienced a first trimester loss days earlier. All of the focus was on them – rightfully so. But I left feeling unfulfilled and a little disappointed that group wasn’t the magic pill to alleviate my symptoms.

I’ve also started back up regular individual counseling sessions. We’ll see how that goes.

In the meantime, I try not to judge my actions. I try to do what’s best for me, but is hibernating in mid-summer really best?

Magic

A few months after A’s death my cousin and his wife announced they were expecting their third child. My other cousins, who live out-of-state, had given birth to a son 2 months after A’s death (see this Post) this is another set of cousins and they live locally. Of course I was happy for them and they were extremely sensitive in announcing it and whenever they were around us. Still, I was dreading watching her pregnancy progress and the inevitable birth of their baby. I can't avoid it as easily as I can the out-of-town family.

Last week, these local cousins lost their baby. I believe she was around 4 months along. E and I both cried when we heard the news.

I feel like I should know the magic words to say. Because I am a bereaved mother, I should know what do and say to bring comfort to my cousins.

The truth of the matter is no one can ease the pain of losing a child. It’s so awful to watch loved ones experience something this awful. I feel extra helpless, if that makes any sense.

Luckily for me (and my own need to do something) she has been receptive to my emails and has even asked me about local support groups. At least I can offer her resources and literature. But it still doesn’t feel like enough. Shouldn’t I have the magic alchemy? The right equation or potion or spell? Shouldn’t I know exactly how to respond every step of the way?

I wish no one ever had to lose a baby ever again.

A Word on Counseling

Years ago I saw a counselor who helped me through a tough transition (or two).  After A died, I went to a grief counselor – someone specifically trained in bereavement and grief. It wasn’t what I needed.

What I need from a counselor is someone who listens well but then offers feedback, not just validation. Someone who gives me suggestions to change my own behaviors. Someone who offers tips on coping or altering outcomes. Counseling isn’t just a place to vent, I am looking to make actual changes – otherwise I wouldn’t be sitting on the couch in the first place!

So after the second visit with the grief counselor, I decided we should break up. I called up my old counselor and have been seeing her ever since. It seems that many people who are considering individual counseling, not just for baby loss but for any reason, give up if they don’t click right away during the first visit, with the first counselor. I’ve been to several counselors over the years before I found my current counselor who I like very much. I try to encourage others who’ve never done it to go two or three times before deciding if it’s no good for them. And then try a different counselor or two or three. Find someone whose personality and approach is compatible with you and your needs. Admittedly, this takes a lot of effort and if you’re seeking the assistance of a counselor, you’re struggling with some aspect of life and may not have extra energy to devote to test-driving various counselors. But it’s definitely worth it. Once you find that person, you’re set for a very long time.

My counselor is not a psychologist. She is a social worker. Titles don’t matter. Compatibility matters. I’m not trying to preach that everyone enroll in counseling. I’m saying from personal experience, I know that counseling can provide guidance that only an unbiased, third party can offer.

Plus, after A died I felt so helpless to make myself feel better that I was willing to try any avenue available: individual counseling, support groups, literature, websites, blogs. I had to do something! I don’t feel the need to attend counseling as often these days, or support group for that matter. But early on those appointments couldn’t come soon enough.

Dichotomies Abound

An extra hour of daylight. The return of the songbirds. Buds on the trees. Unseasonably warm temperatures. Springtime is here with aplomb. At once I feel refreshed, upbeat and optimistic. Then I notice the families out walking, pushing their infant in a stroller. A toddler exploring at the park. A father and his 8-year-old son playing tennis. And all of a sudden the feeble mend on my heart rips open again. I long for A. I want to show him his world, the excitement of Spring. Share irreplaceable experiences and make memories together. I want to be that family at the park, doing nothing extraordinary, just enjoying the day, loving life, getting to know their baby. From reenergized and optimistic to sullen in milliseconds.

Experiencing such a polarity of emotions at the same time – hope, rejuvenation, despair, agony – is confusing, but becoming a defining characteristic of life in Griefland. Right from the very beginning of this god-forbidden journey I’ve been floored by powerful emotions from opposite ends of the spectrum. When A was born I was elated; so thrilled to finally meet our child who we’d been waiting so long for. I was very proud. Simultaneously I felt deep sadness, disbelief and anguish.

After attending support group for the first time, I was encouraged to hear that these families had survived such unthinkable tragedy and had gone on to live fulfilling lives, but in the same breath I was discouraged because their stories, their very existence, attest that this would be with me forever; this unimaginable reality was never going away. In the same vein, after hearing some bereaved mothers speak of the few hours they spent with their infants I felt jealous. I never got to see A alive aside from ultrasounds. Moments later that jealously was countered as I empathized with women who are unable to get pregnant and/or carry to term. On the tail of envy came gratitude, I am thankful for the time I had with A, for the remarkable experience of being pregnant and for the fact that E and I are able to conceive easily.

Four days after the due date is when we found out A had died (see earlier post for details of A's Story). We’ve spoken to various medical professionals - perinatologists, pathologist, midwives – and no one can tell us what happened. No one can explain why A died. The pregnancy was healthy. His autopsy was completely normal. I didn’t have any condition or infection. The cord and placenta were healthy and normal. Concurrently I am outraged and relieved. Outraged that A didn’t have to die. He didn’t have any anomaly or genetic defect that was incompatible with life. He was 100% perfectly healthy. So why the heck did he die? Relieved because I know E and I can produce healthy children.

All of these dichotomies are really trying. Typically, I am a black and white thinker. How can such disparate emotions exist at the same exact time? It’s difficult to get my head around. But I am trying to accept it. Accept the feelings as they come; don’t judge them, don’t over think it. Just accept and go with the flow. Another powerful lesson from A. (Although I’d prefer to stay ignorant if it meant he would be here with us).