at the dog park

At the dog park, we watch our dogs run around and play together.  We refer to each other in relation to our pets.  “I’m Muppet’s mom.” and “Oliver’s mom brought dog toys.”  We swap names of groomers, complain about those who don’t clean up after their dogs and laugh our dogs romp around.  Occasionally, the conversation turns to life outside of our dogs.  Bringing Felix to the park often invites this kind of conversation.  Today, I had the same question, but different conversations.

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“He’s been cranky all day, which is not easy when I work from home!” I shared when someone asked about the little guyI was wearing in the baby bjorn.

“What do you do for work?”

I explained about my two jobs- I work part time as a midwife and part time for a non profit. Usually people, especially other women, pounce on the midwifery as an area of interest.  But this time it was different.

“What non profit?”

“Hope After Loss- we support the pregnancy and infant loss community. We run support groups, do outreach and give financial support for burial and cremation.”

“Oh….” the light hearted tone of the conversation had changed.  A beat later, the lightness returned as she changed the subject. “How was your labor with him?” she asked, nodding toward Felix.

“Hah! That’s a story!”

“Oh, was it long?”

“Oh no, it was super quick,” I said as I gave her the breakdown of how after a fifteen minute labor he was born into my hands over the toilet.

“Wow! And he’s you’re first!?” she said questioningly.

“My second, that’s why he came so fast.”

“How old’s your first?”

“She would have been 20 months…” I could see the confusion in her face as she tried to understand the past tense.  “But she died.”

Her face fell as she struggled to comprehend. “Oh I”m so sorry… She lived for 20 months?”

“No, she lived for six hours.”

“I’m so sorry,” she repeated, looking distressed.

“Thank you.  I like talking about her,” I reassured her.  Then followed a short conversation about my daughter.  It felt good to be open and honest.

As we wrapped up the details of Mabel’s birth and death, she looked at Felix in the baby carrier and said “at least you have him now.”  Looking for the silver lining in the death of a baby.

I kissed my son on his head and said “Yes, I am so grateful to have him.  But I miss his sister still.”

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“Is he your first?”

“My second.”

“Oh, well then you know what you’re in for!” she said with a smile.

“Nope.  No I don’t.” Except I didn’t say that.  I thought it.  I thought about saying it, especially after the previous conversation I had. But I didn’t.  There’s just a split second I have to make the decision, whether I tell her.  I spent that split second thinking and not speaking and the moment was over.  Sometimes I wonder what the conversation would have been like had I spoke.  It’s just so much easier to answer direct questions rather than volunteering the information.

Thank you nurses and midwives

This week is a big week in my healthcare world.  It is Nurses’ Appreciation Week and tuesday was International Day of the Midwife.  In honor of both celebrations, I wanted to thank my beloved nurses and midwives.

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Dear Nurses,

thank you for bringing some laughter into my triage room as we waited for the maternal fetal medicine doctor to come and give me terrible news.

Thank you for being the protector of my privacy- making sure I was ready for visitors in the midst of emotional turmoil.

Thank you for telling me about the “secret menu” the hospital offers where I can order quesadillas and pork bacon.

Thank you for sitting and chit chatting during my two week stay, keeping me sane and reminding me that things were happening beyond the fetal monitor I was trying not to watch.

Thank you for watching that fetal heart rate monitor so I could have the freedom just to be pregnant, knowing my baby was safe.

Thank you not commenting on how ridiculous i must have looked in in my sleeping outfit- it was just too hot to wear pants even though I knew you’d be coming in to readjust the monitor.

Thank you cheering me along in my in hospital exercise regimen.

Thank you agreeing to be my labor nurse, knowing my case would be emotionally hard and would likely sit in your memory for a long long time.

Thank you for taking photos of Mabel’s birth- not in your job description, but so meaningful to me.

Thank you for watching my baby in my stead, while she was whisked away to the NICU and I got my stitches.

Thank you for repeating everything the neonatologist said, right after he left because I could barely process it all.

Thank you for getting Mabel skin to skin with me for as long as humanely possible.

Thank you for the footprints, in ink and in clay, that turned out amazing, all done while she was on my chest.

Thank you for making sure she wasn’t in pain.

Thank you for taking out her breathing tube, gently, allowing me a first good glimpse of my daughter’s face free from medical equipment.

Thank you for taking photos, during her life and her death and in the after.

Thank you for feeding me, which I needed direly, but was unable to recognize myself.

Thank you for being present but unobtrusive.

Thank you taking her gently when I gave her up that very last time.

Thank you for giving me peace and solitude to sleep and to grieve in the hours after I gave her up.

Thank you for coming to her wake, taking me for walks, bringing me food in the aftermath.

Thank you for being part of it all and keeping her safe, in pregnancy, in labor and in the NICU.

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Dear midwives,

Thank you for all the extra care

Thank you each for calling and checking in when we got the news about Mabel’s Down Syndrome.

Thank you for letting me make tons of extra visits to help keep me sane.

Thank you for letting me use my appointments as mini therapy sessions

Thank you listening for a heartbeat first thing, so I knew she was still alive, before doing the rest of the visit

Thank you for having the hard conversations with me- the ones that were hard for me and hard for you.

Thank you for being honest, saying “I don’t know,” when I asked how I was supposed to return to midwifery if my baby died.

Thank you for giving me the few things I had hoped for- skin to skin, Chris cutting the cord and announcing gender (if he could figure it out!).

Thank you coming to meet her in the few hours she lived- so that you are part of the proof that she actually existed.

Thank you for her dress, an outfit given with love and purpose, the only outfit she worse outside her grave.

Thank you for eating wings with me, bringing me cabbage leaves for engorgement and looking at photos in the aftermath, reminding me that you are not only my midwives, but my friends.

Thank you for the donations you made in Mabel’s memory

Thank you for the lilac bush that you gave me because you know purple is my favorite.  It’s beginning to bloom right now.

Thank you for remembering dates- due dates and anniversaries.

Thank you for saying her name, easily and freely, just like she was any old living child.

Thank you for keeping her safe in my womb and alive in memory.

 

 

 

 

 

Mabel’s First Birthday

One year ago today was the saddest day of my life. The day also brought joy- the birth of my first child, long awaited and very wanted- but that joy was overshadowed in the hours following her birth. I went from utter amazement that I had a baby and despite the odds stacked against her, she cried. She might live, I thought. My excitement lasted minutes, until Chris updated me from the NICU. Her lungs were too small. She would die. As I raced to wrap my mind around this outcome, known as a possibility for months, her condition deteriorated in the hours that lay ahead. The days I thought I had with her melted into just a few hours as the vent and oxygen failed to sustain her tiny body. We took away that pain, removing her from life support, after just six and a half hours of life. The warm solid baby that lay on my chest became heavy and cool, her skin turning from a light pink to a mottled purple, her lips deepening to a dark red. I held her until I could hold her no more and gave her up for the final time.

One year ago today my daughter was born. Today is her birthday. But today is her death day.

In my early days of grief, I envisioned such a different day. I would plan a birthday party- a large, kiddie birthday party, with hats, and cake and balloons. I would invite everyone who I would have had she lived and ask them to bring books to donate to a needy school or library in the area. I would write Mabel’s name in each of the books, so she would live on when others read her name. It would be a celebration of her life. I was inspired reading about another mother’s celebration of her baby taken too soon.

Holding that birthday party is part of that ideal grieving woman I often aspire to be, but feel like I fall so short of.

But I can’t have that birthday part for Mabel. I’m just too sad.

I’m sad that it’s even a decision I have to make- how to celebrate my dead baby’s birthday and death day. I’m sad that my baby died. I’m sad she suffered. I’m sad that I have suffered. I’m sad that I’m not where I thought I’d be in my grief at one year. I’m sad that she’s not here. I’m just so so sad.

No big party today for Mabel. No party hats. No book collection.

Today I plan to hide under the covers. I know I have so many people in my life who are supportive and thoughtful (many of whom have already graciously reached out) and their support is welcome. Today, though, I plan to turn off my phone and hide from social media and just be sad. It’s too overwhelming to be gracious and sad at the same time on this day.

As the day approached and I recognized I wouldn’t be making my dream birthday party happen for her, I made an alternative plan. I couldn’t face an in person celebration, but I wanted her recognized so I invited friends and families to a virtual one. I sent these invites out earlier in the week:

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In memory of our daughter on her first birthday we invite you to join us in doing a Random Act of Kindness.  Enclosed you’ll find a small notecard that you can leave behind, if you choose, when doing your Act of Kindness.

We would love to know what you do in memory of Mabel.  Please feel free to email us or post on social media.

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Feel free to join us in Mabel’ virtual birthday party. Or you could simply learn more about her here:

Happy Birthday, baby. I love you. I miss you. I wish you were here.

A kidney ultrasound

The cold gel on my side felt like appropriate payback for the daily cold gel torture I impose on my patients as I search for fetal heart rates. The cold gel on my side was looking for something different. The sonographer scanned my kidneys looking for cysts.

“So it says you have a family history of multicystic kidneys?” she questioned. “Who’s had them?”

“My daughter.”

“Oh, no one else? Did they trace them back to anyone else in the family?”

“Well, she had Down Syndrome, so it’s possible it could been from that. But no one else in the family.”

I had been putting off this ultrasound. Mabel had multicystic kidneys, which we generally attributed to the Down Syndrome, but in theory could have had other origins. It can also be spontaneous or have a hereditary component. Children who are diagnosed with multicystic dysplastic kidney disease (MCDK) often have a parent who turns out to have the disease as well, albeit undiagnosed. When parents have the condition, there is a chance they can pass it on to their children.

So, I was encouraged to get my kidneys checked- for my own health and to see about any risk of recurrence in future pregnancies. I hemmed and hawed about it. It was easy just to chalk Mabel’s kidneys up to the Down Syndrome (kidney issues are more common in children with DS than the general population). I wasn’t sure I wanted to know. I figured (naively) that I was healthy. I’ve never even had a UTI. And if I did have MCDK then it would be yet another thing I would worry about in future pregnancies, but something that wouldn’t be diagnosable until mid pregnancy anyways. And it wouldn’t change my management- the golden question in my field. If a test wouldn’t change the management, then why do it? Do I want the additional worry of an increased of kidney disease, oligohydramnios, poor prognosis and neonatal death, when there is nothing I could do about it?  .  Ultimately I decided it’s important to know for my own health. I want to be healthy for subsequent pregnancies.

“No cysts,” she said as she scanned my right. “And none here either,” as she finished up on my left.

I would be lying if I said I wasn’t relieved. I’m not sure whether the sonographer saw the lone tear that I let escape.

Sunday Synopsis

20 things that babyloss moms do that feel crazy–  do you do some of these things?  anything you’d add to the list?

Not everyone gets a rainbow– I’ve read this article before and I recently came back to it.  I think this is so so important.  We fight against the platitudes of “you can always have another” but yet we recognize that grief does seem to get a bit easier if we have a rainbow.  BUT what if we can’t have a rainbow? What if we are struggling to have a rainbow?  I stiffen at any story that includes a rainbow as part of “healing” because it immediately alienates anyone who doesn’t have a rainbow.  We all (rainbow or not) need to know how survive life.

Getting grief right– This article came across my fb feed at just the right time.  I’m clearly struggling with grieving “right.”  Unlike the woman in the article I didn’t feel like I was succeeding at grief in the beginning- I took a lot of time off.  But here’s the thing, I felt like I was succeeding- I had (have?) this vision of the kind of bereaved mother I want to/should be.

and then from some of my followers/blogs I follow, these recent posts really hit home:

On prayer and the randomness of the world– Whoa.  When people survive a tragedy, saying they were watched over by angels, what does it mean for us who didn’t survive (ie our babies died)?  Are we not watched over? Are we being punished?

Being reproductively challenged today– talk about gratitude.  She’s struggling with infertility and yet can find something to be grateful for about her situation.  At least (and I hate that phrase) she’s struggling in this day and age and not hundreds of years ago.

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On an unrelated note, today is a special day.  I met Thomas’s mom at my perinatal loss support group- she was the first in-person person I met who had neonatal loss and was on the same grief timeline as me.  Today I am paying special remembrance to Thomas and his mom and dad as they honor him on his first birthday.  Happy Birthday, Thomas.

Would you rather know?

The thought came up in my bereavement group. Someone said they just wished they were told that babies died- that these awful things can happen- hearts stop beating in utero, water breaks too early, placentas abrupt, birth defects are incompatible with life, babies are deprived of oxygen in labor. Being someone who knew that babies die for all sorts of terrible, but not common reasons, I can’t identify with that wish. In some ways I wish I didn’t know. Of course, I sought information and am thankful I knew what I knew so I could prepare. But in general, I’m not sure all pregnant women want to know. And as a provider I’m not sure I want them to know. There are some things, yes, I think it’s important they know- ones that they have control over or can test for, but the unpredictable? I don’t think I want all my patients living in unnecessary fear. I’m sad I missed out on the blissful ignorance of a first (or second, or third…) pregnancy. I thought it was bad enough having extra information as a midwife, but then being given the actual knowledge that my baby might die, I never really enjoyed being pregnant in the way I wish I could. I’m not sure I ever will.

I had a patient- an educated one, a nurse in fact, in front of me for her first OB appointment. I was doing my usual spiel when we got to genetic testing. I don’t have endless time, so I try to summarize and simplify the issues as best I can. She had no risk factors, so I talked of a test that can detect the risk of having a baby with Down Syndrome and trisomy 18 and 13. I usually qualify the statement, explaining most people are familiar with DS, but the other trisomies can be more severe and those babies don’t often survive the pregnancy and rarely live into childhood. I talk much more in detail about them if people ask (surprisingly few do), but it is important for me to let people know what they have the chance to test for. If a woman declines testing, I have to ask “If you knew you were going to have a baby with DS or a trisomy, and you knew that baby wouldn’t live, would you terminate the pregnancy?” I am pro-choice (pro-information!) and just need people to be comfortable with their choices. And sadly, medically legally, this question is important. There have been wrongful life cases in Connecticut (talk about sad, people suing their providers because they wish their living child had been terminated). I need to document their wishes. I don’t even cringe when people say yes, they would terminate a baby with DS. But I have a problem when people declines testing because they think it won’t happen to them.

The patient sitting in front of me said she didn’t want testing and when I asked my standard question, “If you knew you were going to have a baby with DS or a trisomy, and you knew that baby wouldn’t live, would you terminate the pregnancy?”

She responded, confident that her age of 33 put her at no risk, “Well, that’s really only a concern when you’re 35, right? And I have no family history.”

After a few more failed attempts of trying to get her to understand that it can still happen despite no risk factors I finally said, “Well, I had no risk factors- I was 33 and had no family history and I still had a baby with a trisomy. So it can happen to anyone. What I need to know is would a trisomy diagnosis change your management?”

I hated bringing Mabel into the conversation, but she just wasn’t getting it. I felt she needed to know.

I had another patient with a subchorionic hemorrhage that kept getting bigger and bigger each week in early pregnancy. She had two late first trimester miscarriages and had been about to pursue IVF when she found herself spontaneously pregnant. As the hemorrhage grew, we providers all held our breath, thinking this pregnancy might go the way of the others. If she remained pregnant, it was so big she was at risk for placenta abruption in the second and third trimester. She was educated too- another health care professional and said to me as I expressed some of my concerns “We are just taking it day by day.” She is still pregnant, in the second trimester. I have mentioned placental abruption, so she knows. But I haven’t gone into detail, saying I’ve known people who had such a case and preterm babies who died. She didn’t need to know. Or perhaps she did know, she just didn’t need to hear it harped upon by me.

So how much do we tell pregnant women? We can’t induce everyone at 39 weeks because some babies’ hearts stop at 40 weeks. We can’t do c-sections on everyone because babies’ hearts can stop in labor. There are risks to those as well. I don’t even tell women to do kick counts daily- it only increases worry. Do kick counts when they are worried, I tell them. Women know their babies best- if baby isn’t moving like normal, then take the time. This is the struggle I have as a midwife- I know the bad that can happen. But I also know most of it is unpredictable. So I take this burden on myself; I worry for my patients, so they can have the blissfully ignorant joyful pregnancy that they deserve. Worrying about unpredictable things can only increase stress and cortisol levels, which isn’t good for moms or babies either.

(disclaimer: I don’t mean to minimize anyone’s anxieties around loss, especially once you’ve experienced it. once you’ve known loss, worry away! You’ve earned the right to worry, even if it’s about unpredictable things. Your innocence was lost like mine.)

What do you think? Do you wish you knew babies died? How would it have changed things? Do you feel the need to lecture pregnant women on the awful that can happen?

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?

Alumnae Magazine

Back in July I received an email from my class rep from my alumni magazine. At the end of each magazine, there are class notes, where people write in and tell a tidbit about themselves. It’s organized by year and every month it’s the first section I turn to, to see if I recognize any names. I’ve never written in myself. I weird felt- like I had one chance to do so, because otherwise who wants to be reading the same names over and over. The paragraphs are filled with my overachieving classmates and their marriages, their children, their lawyer or doctor jobs, their start ups, their amazing trips around the world. In the midsts of all the humble brags I love finding morsels about people doing less typical things. I am mostly annoyed by what I read, yet still am drawn to it.

This summer an email appeared in my inbox aimed at those of us who lived in our freshman dorm. It was a smart tactic- I certainly gave it more thought since I was asked rather than just volunteering info.

What are you up to these days?  Whatever you want to share is welcome. Although family and work news is always great, I (and your fellow ’02ers) would also enjoy hearing about hobbies, travel, get-togethers with other ’02ers, and commentary on 30-something life. It doesn’t have to be written in third-person or otherwise edited/print-ready either; that will be done by me and a series of copy editors following me, so feel free to hit reply and send me a quick note!

When I first read it, I thought “Hah! Family and work is what 30-something life is often about!” It is for me, at least. The request came at just the right time. I spoke to Chris and he was supportive so I replied:

I am currently living in Connecticut and working in the New Haven area as a nurse-midwife.  This year my husband and I welcomed our first child, Mabel. We knew she would be born sick, but we remained hopeful.  She lived for six precious hours after birth.  Lately I spend my free time blogging about my grief in hopes of advocating for others who have also experienced baby loss and hoping to increase awareness for bereaved parents.  

My class rep responded so appropriately with the right kind of “I’m so sorry” and asking if my blog was public so she could read it.   She said they don’t usually publish websites, but she’ll see if the editors would in this case.

So this month I opened up my magazine and found my name in bold among the wedding and baby announcements of my doctor and lawyer classmates. I was four months younger in my grief when I wrote it, just starting to feel the desire to speak up- really speak up- about my grief. I was nervous, thinking I’d be perceived as a Debbie downer or attention seeker. At the same time, I was angry at the injustice of the social pressure I felt to not share about the birth of my daughter which was followed quickly by her death. I had the same right to share baby with my classmates too! So now, with many months of speaking up under my belt, I’m so glad I to took the risk.

Have you taken any risks that paid off? Any that didn’t?

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How’s-the-baby season

“How’s the baby?”

I was asked twice today. I am now seeing patients for their annuals who saw me this time last year, when I had a baby bump. I dreaded this time. I made the sign for this time. Months ago I couldn’t imagine the pain I would feel as people eagerly asked about the baby.

“She died shortly after birth.”

I can say the words effortlessly now. I don’t get flustered. It’s the awkward silence that follows after the requisite and heartfelt “I’m sorry”s that I don’t know what to do with. I fill it with short sentences like,

“We knew she was sick, but hoped it would have been different.”

“It’s been a difficult year.”

“I’m here, so that’s good.”

I’ve been asked a number of times about the baby, but those comments have been spread out over days or weeks. Two in one morning made me realize I’ve now hit the how’s-the-baby season.

I was just getting to the point where I wondered if I should take down my sign. I sometimes found the comments disrupting to the visit- I never minded them (I always appreciate someone who has something to say about my baby), it sometimes just didn’t flow- I felt like I had forced the info on them with the sign. I’ve had several patients come back in after their visitor or call me later, seeing the sign as they left. I feel like I can answer questions about “the baby’ more easily. I was thinking that this easiness with the question was an indication that I could do without the sign. But today has shown me…not yet. I’ll probably take the sign down either in the new year or at the one year mark, because when else do I take it down? I’m ready and not ready all at once.

“How’s the baby?”

Part of me wants to respond, “She’s dead, thanks!” But I don’t think people would quite get my dark humor there.

How do you react to questions about your baby? Has it gotten easier? Harder?

Day 27: Express

36+2

Today I have been without Mabel more days than I had been with her. For 36 weeks an 1 day she was safe. Despite the low fluid, my body nourished her, grew her and comforted her. All her needs were met and she wanted for nothing. She was safe. She didn’t need kidneys or lungs- my placenta did all their work for her. Her clubbed feet fit nice and snugly in my uterus. The holes in her heart made no difference- just added to the flow. Her extra chromosome was invisible inside me. I would have kept her in longer if I could. A few days before labor I asked if we could push out my induction for two more weeks and was thrilled and relieved when my high risk doctor and midwives thought it was a good plan. Mabel thought differently. She decided at 36 weeks that she her time inside me was up. I like to think that had she stayed inside longer, she might have died or had such distress I would need a c-section, and so she chose to come on her own so that I could meet her alive and have the vaginal birth I had hoped her.

last photo of me, pregnant at 36 weeks and 1 day, moments before Mabel and I became two separate beings.

last photo of me, pregnant at 36 weeks and 1 day, moments before Mabel and I became two separate beings.

Today is 36 weeks and 2 days since that day. She has been out longer than she has been in. In a few more days she’ll have been buried, in the dark of the earth, longer than she had been snuggled in the dark of my womb.

Her memory fades with time. Sometimes it’s hard to believe that she was real- that this really happened. Holy sh*t, I had a baby. I was a mother. My daughter died. I don’t remember what it felt like to be big and pregnant except for the random phantom kicks I still get. They are sparse and an awkward reminder because my baby had no fluid, so she wasn’t the biggest kicker. My pregnancy almost feels invalidated by her death. No one will ask me about my experiences when they are pregnant for the first time. No one will seek my advice. No one will ask for baby clothes hand me downs. And then they’ll have their babies and I ‘ll be even more useless, because though I had a baby I know nothing of parenting a live child- unless of course someone wants advice about taking their baby off life support.  I know a few things about that.

I thought I would do something to mark the day I turned 36 weeks and 1 day without Mabel, but the day came and went. It feels like my due date felt- an end to something that I don’t want to end.

Today I’m sad that the time I will be without my daughter will continue to grow longer and longer but my time with my daughter will forever be shorter.

#CaptureYourGrief