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

meghanoc:

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.

Originally posted on 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…

View original 861 more words

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?

I am not the bad guy

I have a confession. I was not the perfect pregnant woman. Every few weeks I had a glass of wine. I snuck some raw cookie dough and licked the cake batter bowl. I ate too much sugar and not enough vegetables. Many of my babyloss counterparts say “I did everything right” and I often have chimed in, though I know I did a few things that others might have looked down on me for. But none of these things killed my baby. A faulty chromosome was really her downfall- something that is usually quite livable, but in her case leading to a cascading effect of fatal birth defects.

So when I hear people doing some counter culture things in pregnancy (crossfit? An occasional glass of wine? Medication with potential effects on the baby?), I have always been rather understanding, even now in my grief. But I draw the line.

Arguing with me about how marijuana should be allowable for pregnant women doesn’t change the fact that it’s still illegal here. My job requires that I protect your health and your baby’s health. If you are unhappy with the law, take it up with your state legislature, not with me.

I could go on about how people who smoke marijuana often use other drugs, about how unregulated marijuana could be laced with other harmful substances, how people who make poor decisions regarding drugs are more likely to participate in other risky behaviors.

I am not the bad guy.

Being pregnant is a privilege and an opportunity to better oneself. I was told my baby was likely going to die and I still recognized that. I asked advice of my providers and listened. I wish others would do the same.

Do you have any confessions? What do you get mad at seeing other pregnant woman doing?

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?