Mabel came to dinner

I made a grand entrance, practically somersaulting onto the patio as I lost my balance and landed on my side. I cradled Felix in my arms and ended up underneath him, cushioning the fall. He cried, startled from the sudden loss of balance but was easily soothed.  We were at a friend’s birthday party at a restaurant that hosts kid friendly happy hours on the patio on Sundays, picked so that it could be a family friendly event. The weather was beautiful as we sipped cocktails and let the kids roam by the planters.  I sat with Chris and Felix and made small talk with some of the other party guests- including the birthday girl’s parents. We knew a couple people well, but most of the guests were new to us, including the parents.  As I held a squirmy baby in my lap, the common question came up- “Is he your first?” the father of the birthday girl asked.

My husband was the first to respond.  I’ve answered the question many times but I haven’t had the chances to witness my husband answer.

“He’s our second.  We had a daughter, but she died after birth.”

“I am so sorry,” the father responded, easily. “I know what it’s like to lose a child and it’s never easy. I’m so sorry.”

It was perfect.  But of course it was- he was a bereaved parent. I had known he lost his son.  When Mabel died, his daughter and I shared some moments of understanding. We talked about how even simple small talk can be daunting when someone close to you dies.  I had to get used to the “do you have kids” and “is he your first?”  She had to get used to “do you have siblings?”  These questions can make it hard to make friends or even date easily.  Or perhaps they are great screening questions- a litmus test to see if people would be comfortable cavorting with the bereaved.

Later at the party, as the food came, I heard my cousin’s voice from across the table.

“Meghan, look! Carrots!” She offered up a small plate for me to see two carrots accompanying someone’s meal.

“Awww, look. Mabel came to dinner,” I said, easily, happily.  Smiling I took one of the carrots offered and crunched.

“How did carrots become her symbol?” asked another party goer- the birthday girl’s sister. After I told her the story, she saw my necklace and pointed it out. “Oh wow! Your necklace is a carrot too.” Though I didn’t know her well, she had known about Mabel through her sister.  And she asked easily, bringing Mabel into the conversation without hesitation. Because she knows too what it’s like to be bereaved.

And just like that, my baby was at the party.  She was the center of attention, she wasn’t ignored.  She was just there.  May all my social outings be so easy.

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Sunday Synopsis

*potential tirgger* The nationwide superbowl commercial. I watched the superbowl over the internet where the commericals were different, so I didnt see this ad until I started reading about it on my facebook and blog feed.  I wonder how I would have felt if it suddenly came on, instead of having much preparation and nowing what I was about to watch.  There has been lots of talk about it- how it was a buzzkill, how it was a trigger and how it was validating, depending on the audience watching.  I’ve read a few good posts about it and here are some that resonate with me. This one and this one i thought were both good reads.

The saddest story Roald Dahl ever wrote.  I had no idea Roald Dahl was one of us, having experienced child loss.  This story came up in the midst of a rampant measles outbreak – and though I am strongly pro-vaccination, I am not intending to post this to start a conversation about vaccination.  Instead I post as one of those eye openign reads, where I realized our club is bigger than we know.  I have been reading (in warmer weather) The BFG by Roald Dahl (one of my favorite childhood books) to Mabel when I visit her grave, so learning of his loss seemed especially poignant.

Family begs for camera stolen with first and final moments of baby’s life-   Oh gosh, could you imagine? Some of us weren’t fortunate enough to get photos at all, and those of us who did (whether our own, hospital ones or professional ones) I’m sure could imagine what it would be like losing them.  I’ve actually thought about- what if our house goes up in flames- what would I save? Literally the first thing would be either my camera (with her photos still on it- I cant seem to erase them despite having downloaded them all) or her book and box.

Why your doctor is always late– I find this a fascinatingly accurate depiction of what my day is like.  For example, on friday I saw 26 patients. Whew!  I don’t have control over my schedule- dictating how long I get with each patient. I am a firm believer of giving each patient the time they need (within reason).  I also have a 15 minute rule- allowing pts some wiggle room to be late, but having them reschedule if they are beyond 15 min out of respect to my other pts.  Some pts need to be seen regardless (certain prenatals) and if they’re super late, I ask them to wait and I’ll work them in.  The take home message for this (for me, at least) is: I’m sooo sorry I’m running late- the reason I am is usually either because I’m trying to give good care, there was an emergency or because I had a pt late. I know from a pt perspective  it’s super frustrating to wait and I respect that.  It’s also super frustrating to us to be running late for your sake.  We are all frustrated with the system.

The story of the dad who accepts their baby with Down Syndrome, while the mom supposedly rejects him.  First read this article.  Then read the counter one.  I’m not sure what the whole story is, but what seems to be true is that this couple had a baby who was given the diagnosis of Down Syndrome at birth and it caused a bit of a rift between the couple.  Armenia doesn’t have good support (socially or structurally) for children with Down Syndrome.  I want to villify the mom and make the dad the hero, but I can’t totally commit to it because it’s very hard to get that diagnosis at birth, especially in a country that is not accepting.  If the story hadnt gone viral, would the couple have worked things out?  Who knows.  But I do appreciate how it is in a way giving positive attention to children with Down Syndrome.

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?

 

Alive

I recently reconnected with an old friend/colleague who had moved away. She had learned of Mabel and her story from some mutual friends and called me. Her message seemed urgent and when we finally were able to link up by phone, I understood her urgency. She too had lost a baby. I had known her for many years and knew of her two living adult children, but I didn’t know that there was a child that came before. She told her story; I told mine. Thirty years and very different circumstances separated our children, but some of the emotions were the same.

She relayed a story about one of her living children, a daughter in her 20s who is trying to find herself, her career. Her daughter asked her, “Mom, growing up, what did you want for me? What did you want me to be?”

In her head the answer was clear: “Alive! All I wanted was for you to be alive!” It was not the answer she gave- she spoke of happiness and fulfillment, but her thoughts are so true of those who have lost a child.

What do I want for any future children? I used to think about how I wanted them to go to good colleges, for them to have good friends, for them to be kind, compassionate children. Then I was told Mabel would have Down Syndrome and realized a good college was unimportant. I focused more on hoping she would meet other kind and compassionate kids who would befriend her. I had no doubt that she herself would be kind. I secretly hoped she would still excel in her own way- she was the daughter of two well accomplished adults who would teach and love her in all sorts of ways. Then I was told Mabel would be sick- very sick- and she might not live. She might not live through pregnancy even. I didn’t know what to hope for- hope that she was born alive and we would be faced with all sorts of difficult decisions, worrying about our child suffering or hope that she died in side of me, where she only knew the comfort of my womb, but I”d never hear her cry. I think I ultimately hoped she would be born alive and we would take the decisions as they came. I hoped she would defy the odds, hoped that the doctors were wrong, hoped that she would live. Not just be born alive, but actually live.

I was lucky. Mabel was born alive. She lived- six short hours, but she lived. In my grief, I try to remember to be grateful. I recognize I am among the fortunate in the babyloss community, if there is such a thing. My baby lived. Barely, shortly and sometimes even suffering- but she lived. I hope that she did not suffer long and I am grateful that she died in my arms.  Not every parent can say that- many are separated from their child when they die.  Many children suffer longer than Mabel.

What a weird world I live in to be grateful my baby lived a whole six hours.

Regardless of whether our babies lived only inside of us, lived for a few hours, a few days, a few months, regardless of where and how long they lived, we all had the same hope for our children and my friend put it well. We hope that they are alive.

How did your hopes for your child/children (living or gone) change with your loss?

Dream child

She was a child- a real child, seven years old maybe. Tow-headed and petite, with the button nose that was the same as in her newborn photos, she appeared in my dream. She didn’t speak much, but I imagined my mind was formulating how she would have been realistically, with the Down Syndrome and her health problems. In the dream she was healthy. She had two little boy friends, who also had Down Syndrome and she played baseball.

I have dreamt about her a few other times- mostly sad dreams, like trading her in for a health y baby. But this was wonderful- I got a true glance of the what-might-have-been.

Hi Mabel.

Sigh. How sad it is that we see our children only in photos, in memories and in dreams. I’m so thankful I have this one.

Have you dreamt about your lost love one? How would you like to dream about them?

Halloween

I enjoy a good costume; I always have. Every year for my birthday I have had a theme party, one involving costumes- Bowties & Moustaches, Mad Hatter, Cowboys & Ninjas. Halloween also provides a good outlet- I’ve been Curious George, an eggplant, a proctologist and Peter Pan in recent years. I wear a costume to work. Last year, while pregnant with Mabel, I threw on one of Chris’s shirts over my maternity jeans, grabbed my boots and my hat (from my most recent birthday party) and was a simple cowboy. At 22 weeks and in a men’s shirt, you couldn’t tell I was pregnant. I spiced up the costume with a very authentic looking moustache. I even brought moustaches for my staff to wear. My favorite was the 70-something year old doc also donning a fake moustache for the entire day. Patients gave an easy laugh when I entered the exam room. It was fun!

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This year, I wasn’t exactly in the holiday spirit. I wasn’t feeling playful, so I wore no costume. If I had thought enough ahead, I would have pulled together some sort of carrot costume. but I didn’t think of that until midway through the work day. It was hard for me to give up dressing up altogether. I did let a little bit of holiday seep in through my socks.

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We made plans to go to a friend’s house after work because they get lots of trick-or-treaters and we don’t get any on the road we live on. I wasn’t terribly excited to ooh and aah over the little kids dressed up, nor did I feel in the mood to celebrate. But I wanted to dress my pup up and Chris and I thought she could benefit from the socialization that came with constant ringing of the doorbell. And after taking Muppet out to numerous walks and festivals, I’ve learned she usually attracts lots of positive attention. It’s a decent substitute for the attention a baby gets- lots of oohing and ahhing. I figured the attention we’d get over her would balance out the reminders of what we lost.

Ready for the beach!

Ready for the beach!

Hot dog!

Hot dog!

School girl! (though, trust me, she's not that innocent)

School girl! (though, trust me, she’s not that innocent)

Overall, she got some attention, but not as much as I had hoped. I suppose children in costume and the promise of candy held more attraction than my dressed up pup. I was saddened when I saw kids in strollers because I was reminded of what I might have been doing if I had a living eight month old. Granted, she might have been too sick to go trick or treating, but I not only mourn the sick child I lost, but the dream of a healthy one too.

How was your Halloween?

Sunday Synopsis

A few articles that spoke to me this week:

Halloween Grief– I never thought twice about all the headstone decorations that accompany Halloween.  But since I visit my daughter’s every week, a tombstone now carries new significance.  Cemeteries are no longer scary to me; they are a place of comfort, of sadness.  I’m not one for skeletons and ghosts, but having seen death so close up, i know rethink even these seemingly lighthearted images.

Grieving without God- for those who don’t have religion to turn to (whther you never did or find yourself turning away)

The Morning after– a reflection on how babyloss moms might feel around Halloween.  I especially like the use of the term “shadow children”

 

Have you read any good articles lately.  Feel free to share…