Sunday Synopsis

Self portraits of living after loss– Oh my!  the hand ones, the upclose face shots, the nest one.  So powerful.  Which ones speak to you?

 

Have you read anything lately that has resonated with you?  Please share.

 

Thanksgiving

My Nana died when I was 14. She gave me a suede brown shirt the year before she died. She taught me how to play poker. And she made the best eggs-on-a-raft (a toad in a hole, to others). She also hosted Thanksgiving for years and years. One holiday, the event was big enough that we divided up into two tables. Someone had the bright idea to have a lottery system; rather than dividing up into the sensible kids and adult tables, we all drew numbers, with most landing at the dining room table and a few unlucky souls ending up at the less desirable kitchen table. I scored a seat at the main table, but a great aunt was stuck in the kitchen. As we prepped and got ready for our seats, my dad pleaded and bribed me to swap seats with my elder relative. Little stinker that I was, I stubbornly refused. I must have seemed like an incorrigible kid, but really I just wanted to sit at the same table as my Nana. I would have sat in the kitchen easily if she was seated there too.

When my Nana got sick with cancer, she moved in with her daughter, my aunt, who took over Thanksgiving that year and has since hosted.

Today is a day when we are supposed to be outwardly thankful, announcing our gratitude frequently and publicly. I have spent the past nine months working hard on finding gratitude on a daily basis- today I’m taking a break. It’s not that I’m not grateful-I have so much to be thankful for- health, family, friends, work- but I’m feeling rather melancholy. I woke up thinking of my Nana. I made myself an egg on a raft in her memory.

Mabel is of course on my mind. This time last year I was pictured attending the next year’s Thanksgiving with a baby. She’d be wearing little leg braces for her clubbed feet and would be still working on eating solid foods. I was optimistic, but realistic. Today, after some debate, I will attend my family’s Thanksgiving. It will be hard, as I go through the motions of living out the next holiday without my baby.

Every action today is a reminder that my baby is not here. I will go be with relatives whose lives have moved on while mine has stood still. I’ve debated skipping to simply avoid the pain, the memories and the reminders- but there are some things I have to face and it’s time. If it’s too much, I’ll simply leave. For now I’ll focus on the good food in my near future. I look forward to the carrots my mom makes every year.

My therapist said it best as we said our goodbyes last week- I hope you have the best Thanksgiving you can.

What is Thanksgiving like for you today?

Friends remembering

My friend is a high school teacher and he recently posted on my facebook wall “Today in class, I reordered students seats by placing them in alphabetical order by middle name. One girl’s middle name was Mabel. I told her that my friend had a beautiful daughter named Mabel; she should wear it with pride.”

******

At the Buddy Walk, a fundraiser for out local Down Syndrome congress, we walked with Jenna’s Journey- the team in support of a lucky little girl who I had the pleasure of helping into this world six years ago.  This year they walked in in honor of Mabel and Jenna’s mom had some great bracelets made.  There were many left over after the walk and I gave some of them to some of the donors to my next walk- Footprints on our Hearts, supporting my local babyloss bereavement group. The other day my friend was telling me how her daughter had taken a liking to the bracelet I had sent her.  Her daughter knew Mabel’s story- she remembered the day when her mom was really sad because of a baby that died- and so she understands the significance of that bracelet. Recently her daughter was changing and my friend noticed that she was wearing the bracelet around her ankle.

 

Nine months later and Mabel lives on.

 

Have your friends done anything in honor of your lost ones?

My trail for tears

Our town has a paved walking path, an old railroad track converted into public space. It traverses two other towns right into the nearest city. Walkers, joggers, recreational bikers, dog walkers are common visitors to this path. The trail has become a place of meaning for me. In those first days and weeks after Mabel died, I needed to get out of the house. I needed a little break from the constant and usually comforting presence of family and I needed to see some space outside my bedroom. It was February, the heart of a snowy winter when my baby died, so getting out of the house was not always a simple task. In my suburb, one known for it’s sprawling spaces, it’s orchards and it’s country feel, there are not many sidewalks. The town does plow part of the trail, though. So everyday Chris and I would bundle up and head to the path to go for a walk. At first my pace was slow. I had difficulty with my pelvis during pregnancy- some symphasis pubis dysfunction that interfered with my running- and after childbirth, my pubic bone was very angry. Even the simple act of walking sent pain through my bone. But it was important for me to walk, to exercise, to get outdoors.

After Chris went back to work, I often met friends at that path. My pace picked up as the physical healing began, but it was often still painful during those walks. My friends listened to me as I spilled out all my sad and angry thoughts- about the past, the present and the future. They held my hand as women passed by with strollers and baby carriages. I even saw a woman walking with her son who had Down Syndrome. Reminders of what I had lost.

But I continued walking. I eventually was able to jog a little even- something I have since given up, the pelvic recovery too frustrating.

I took Muppet for a walk on the trail for the first time. We have often kept her from dog friendly places for the past two months as we got her updated on her vaccines. But getting the most recent round, I felt more confident about taking her to the path.

It was a cold day- winter has crept in early here in New England- and I donned a warm jacket, a hat and mittens for the excursion. The path was relatively deserted, save for a few runners and an occasional dog walked like myself. I had walked this path last winter, when it was barren and surrounded by snow, and watched as it transformed into greenery and wildlife reemerged over the spring and summer. On this day, the leaves were brown and mostly fallen from the tree branches, a cold nip in the air. As I walked Muppet the first leg of the path, I couldn’t help but be reminded of those early days and what this trail has meant for me. So many tears I shed here.

Are there certain places that remind you of your grief?

We are all sad

I reviewed her chart as she sat in front of me for her new OB appointment. Two of her children had died in a freak accident in the recent years and now she was pregnant again. She told me this was a planned pregnancy. “This must be a complicated happiness,” I said. She nodded in complete agreement. I shared, that I too had lost a child- under very different circumstances- and we had a little side conversation about child loss.

“I had some people tell me ‘I know exactly how you feel because my child died too!’” she said, “But I’m like, ‘no you don’t. Your child died in gang related gun violence. He was doing something he shouldn’t have been doing. My children were innocently sitting at home!’”

It was a powerful statement.

Hierarchy of loss. It is something we discuss a lot in the loss community- loss is loss, we say. Is there a hierarchy? I think yes and no. I think it is a different loss experience having a miscarriage at 5 weeks and one at 12. I think it is different having a stillbirth versus a neonatal loss. I think it is different having a neonatal loss versus child loss. I think it is different having a child die from something preventable versus random. I say I think before each of these statements because I have only experienced one such scenario. I know there are some people out there unfortunate enough to have experienced more than one of these and perhaps these people can speak better of how, if at all, the losses are different.

I often feel almost guilty in the loss world because my baby was born alive- I got to meet her, though briefly. Many of my loss friends never had the privilege of hearing their baby cry- whether it be through miscarriage or stillbirth. Weird, right? To feel some sort of guilt about my baby living? I had to experience other loss, like the loss of a carefree pregnancy and the pain that comes with wondering if my child is suffering. But I also know exactly why my child died, while others won’t ever have that knowledge. I could go back and forth about how my loss was harder in some ways and easier in others- but it isn’t a competition. There are no winners in babyloss. All I really want is the pain related to my loss acknowledged as real and legitimate.

My patient is right in a way- her loss is different because her children were dong nothing wrong. The other woman’s child was engaged in risky behavior. But my patient is misguided in a way too- I’m sure that other woman was not only mourning the death of her child, but also the loss of what he could have been- the child not involved in gangs. She probably had complicated guilt over her child having some responsibility in his own death or maybe feels responsible herself for being unable to keep him out of gang violence.

I think what it comes down to is no one knows exactly how each of us feels, but we are all sad over our losses- the early ones, the expected ones, the preventable ones and the random, unexplainable ones. I know I am constantly seeking the person who knows exactly how I feel, but I think I’d be hard pressed to find another 34 year old midwife who lost her first child to an extremely rare and random combination of birth defects. So for now I take solace in the comforting words of others who share aspects of my loss. Those with infertility know what it’s like to wait almost two years and have no baby to show for it. Those who miscarry know what it’s like to have the dreams of a normal pregnancy ripped away. Those who chose to terminate based on a difficult prenatal diagnosis know what it’s like to make extremely hard decisions for their child.  Those who have a stillbirth know what it’s like to birth a baby but leave the hospital with empty arms. Those who have neonatal loss know what it’s like to watch their children die, wondering if they suffer. Those who have child loss, preventable or not, know what it’s like to bury a child.

We are not the same, but we are. We are all sad.

What are your thoughts? Is there a hierarchy of loss?

Credit: Return to Zero https://www.facebook.com/returntozerofilm

 

Sunday Synopsis

When a child dies and another is born… I don’t like this article.  I feel like it is almost critical of those who want to have a child after loss.  Granted, I am reading this from a babyloss perspective and not the perspective of a subsequent child after loss.  Personally I think it’s demeaning- as if we all just figure another child would replace the one(s) we’d lost. Newflash: Mabel had Down Syndrome and multiple medical complications- no one could replace her.  Her condition was one in a million.  Even if she was healthy, she was her own person.  I’ve always wanted several kids (a desire I had taken for granted) and if I choose/am lucky enough to have more, I hope people don’t judge me.

EIght tips to help someone grieving through the holidays: a nice article. do you have any other tips to add?

Lessons from the stage: The term “yes, but…” is avoided in good improv for good reason- it kills the story.  It is strikingly similar to the “at least” we often hear in loss.  I’m going to try to be more conscious of this term now too.

Baby Bottles

“Do you have any recommendations on bottles?” she asked, her body swollen with it’s second pregnancy well into the third trimester.

I stared at her blankly, not understanding.

“I plan to go back to work, so you know, for pumping.  Do you have any recommendations?”

I was not only lost by this nonsequitor- we had just been discussing her thoughts on this baby’s weight compared to her first- but I was also surprised she was asking me.  I’m a midwife- birth is my thing, not bottles.

“That’s a better question for your pediatrician.  I don’t do babies once they come out of you.”

I wanted to add, “and my baby died. I never got a chance to breastfeed, let alone worry about bottles.”  I was mad at this woman in a way.  This was her second baby.  Shouldn’t she have figured it out with her first baby?  And really?  You’re asking the woman whose baby died?

Not fair, I know.  She probably didn’t read the sign about Mabel.  She has no reason to know anything about my personal life.  And since part of my job technically is to deliver babies, it’s not too much of a stretch to assume I know something about feeding them.  I do know a bit about breastfeeding after all.

I couldn’t help but feel angry at the woman even though it wasn’t her fault.  I know deep down I’m not really angry at her, I’m angry at the circumstance.  I felt like the universe was teasing me- playing a cruel little joke, presenting me with a question I should have been able to answer had my baby lived.  That universe which I once thought if I was good to, it would be good to me.  Silly me.

Have you ever felt like the universe was playing a joke on you?

singsong baby voice

She sat across from me in my office.  Clearly excited about another pregnancy, but also distracted by her one year old.  She used that baby voice- the kind that is singsong, the rises and falls of her tone easily grabbing the attention of her toddler. My questions interrupted her playful talk.

“Any family history of thalassemia? sickle cell? congenital heart defects? Down Syndrome?”

She answered easily without taking her eyes of her son who was exploring the bookshelf, then the chair, then the picture frame.  I was very attentive to their interactions, ones that would solicit coos and oohs from most people, but from her perspective I likely seemed immune.

All I could think was- my baby died.  I will never develop that singsong voice with my baby. She’ll never explore a doctors office like he was.  This child was three months older than what Mabel would have been and he was developmentally age appropriate.  He did not wear leg braces to correct clubbed feet or have any marks from heart surgery or kidney dialysis.  I realize that the pairing of this mother and her healthy child would never have been like that of me and my sick one, had she lived. I grieve not only the child she would have been, but also the child I  know she wouldn’t have been.  I was jealous of this mother and her seemingly easy parenting.  It was hard not to think it was being flaunted in my face, though I do recognize she had no idea the pain it was causing me- and I didn’t expect her to.  She was just doing what she should be doing, mothering.

Where have you seen pain in day to day interactions?

An early Thanksgiving

We are told that finding things to be grateful helps us move through our grief. I’ve experimented with this- practicing it while I was still pregnant (being grateful for merely having the experience of pregnancy, even though my baby would likely die) and after my baby died, by taking two weeks and recognizing publicly three things each day that were good. Here is a post by another babyloss mom who frankly had a pretty crappy day. Most things are not specifically related to loss, but when I have a crappy day, I often think “if I had a baby, I wouldn’t care so much.” So when one of my fellow babyloss moms was abel to put her crummy day in perspective, I was impressed and inspired.

baby boy blue

Since yesterday afternoon, pretty much everything that could go wrong, has. Yet for some reason, while I was all teary about it yesterday, I truly woke up in a better frame of mind today. I’m not sure why, but I’m calling it my early Thanksgiving.

First, I got my period. It was three days late, so I had started to get really hopeful that I was pregnant. No luck.

But… at least I don’t have cramps or pain, the period seems normal, and the fact that it’s late means we will be home from our Thanksgiving travels and therefore won’t miss the next IUI cycle. Plus, a friend of mine is around a month pregnant. At first, I was bummed that I wouldn’t be pregnant with her, but then I remembered: I’m being induced a month early next time! We could still give birth at the same time! Some…

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Sometimes knowledge is power and sometimes knowledge is pain

I have a friend who is a doctor and she shares snippets of her daily life- the trials and tribulations of a resident physician, her patients and the lessons about life she learns. Some stories are beautiful and uplifting. Some make me cry. Some make me cringe. All are insightful.

Recently she wrote of a meeting of providers- discussing their patients’ cases and one of them, an oncologist was distracted because he had recently learned of his mother’s breast cancer. He had trouble focusing on the meeting because he knew better than anyone what the diagnosis meant for his mother and his family.

“Because sometimes knowledge is power and sometimes knowledge is pain.”

This was me, my entire pregnancy with Mabel. I had a week before my first ultrasound where I assumed everything would be okay. Until there was no heartbeat and we thought I had a blighted ovum. Seeing a heartbeat a week later, confirmed a viable pregnancy but I spent the rest of the first trimester knowing what it felt like to miscarry and worried I’d be feeling that way again. Though I told my family I was pregnant before my genetic testing, I asked them not to share the news until we got the results, because even though I had no risk factors, I knew it could still happen to me. When I learned Mabel had Down Syndrome, I decided to accept the diagnosis, but it wasn’t simply recognizing I’d be raising a child with special needs. It was also recognizing that I might not be- I was all too familiar with the risk of miscarriage and stillbirth with the diagnosis (ironically, I wasn’t thinking about neonatal loss). When we were told her kidneys weren’t working, she had no fluid and if she were even to be born alive, her lungs would likely be too small to sustain her life, I had some hope, because what mother doesn’t? But I also knew. I’ve told people myself when there is no fluid at early gestation that their baby will die. I knew.

Yes, sometimes knowledge is power. I was able to research and make my own educated and informed decisions about my body and my baby. But knowledge was also pain for me. I never enjoyed my pregnancy like I should have, like I wished I did; it was too tainted with worry.

I’m sure those of you out there who have had a pregnancy after loss also know that knowledge is pain. There are some of you who may have learned that lesson with your first pregnancy, like me.

Is knowledge power? Is knowledge pain? What is your experience?