Grief Camp

It was the beginning of March after Mabel died and everyone left and Chris went back to work.  I remember the month of March staring at me like an endless road.  It felt like the longest month, made worse by the unpredictable and teasing weather that a New England winter brings at that time.  I kept telling myself, just get through March and April will be better.  I had things to look forward to in April- a girls’ trip to California, a wedding, a trip to somewhere warm with Chris.  Maybe I thought that in a month I’d feel miraculously better?  It’s true that my grieving is different.  I don’t dread each day like I did in the beginning.  I don’t cry as much.  But I am still grieving hard.  I’ve read up on the stages of grief and I know it’s a fluid process- jumping from one stage to another day by day, minute by minute.

I’m almost dreading these things I was once looking forward to- I think because then they’ll be over and what do I look forward to next?  I also think they bring me closer to work- that was done intentionally, planning a trip before returning to work as a last relaxation thing before reality sets in.  But because of that proximity, I’m almost dreading the trips because it means I have to return to reality.  I don’t love living in my grief stricken la la land, but I know I’m not going to love living in the real world either.  I wish there was some in between- some grief camp where I could go.  Where we wouldn’t have to face the real world and we could just sit and talk about our babies all day.  Where I wouldn’t have to choose between returning to a job that I once enjoyed but have pregnancy and birth held up in front of my face daily and leaving my career all together.  Where I didn’t want to hide my tears or worry about how my sadness makes other people feel.

In the beginning of my grief a month seemed sooo long.  I didn’t know how I’d get through a day, let alone a week or a month.  Now a month feels so short, with work looming at the end.  I am in a very different place now than I was a month ago, but they are still both bad places, just different kinds of bad.  Where will I be in a month from now?  Somehow I really did think something magical would happen when April came.  Now that it’s tomorrow, I know that is not true.  April may bring some “fun” things, it may bring some well-needed distraction, but it is also the beginning of the end.  I have to go back to work, I know I do.  My job has said they are flexible and I think I could tell them I’m not ready.  But what’s the alternative?  More of this.  Staying home, avoiding the inevitable.  I can’t hide forever.  People tell me that no one is going to expect me to be better, even when I return to work.  There is only some truth to that.  People will expect me to function on some level similar to where I was before.  My job can’t really be half-assed.  Either I’m working or I’m not.  The further I get from Mabel’s death, the better people expect me to feel.  It’s the truth.  And my return to work feels like an end to my mourning period.  It doesn’t just feel that way; it is that way.

Hope is a funny thing.  I wondered in pregnancy if I had hope for my unborn baby.  I was told many conflicting things- your baby might die, your baby could live.  There were times I felt bad because I thought I wasn’t being hopeful enough, though now I know I was just being realistic.  The hope I had was made evident by the grief I felt after we lost Mabel.  Of course I had hoped she would live!  But then after Mabel died, what was there to hope for?  The immediate thing was to hope to feel better- to make the pain go away.  I hoped I would feel better in April.  It seemed so far away that it seemed almost possible.  How silly I was.  I don’t feel better; I just feel different.  Sometimes I feel worse, because now I’m beginning to see through the haze, to see what life will be like.  So what is there to hope for?

Inner Monologue

I read my book for book group.  As I started reading it in my postpartum weeks, I remember thinking- this is safe.  What a good distracting book for a grieving new mom.  It’s the memoir of a chef.  The early pages were all about growing up and restaurant work and foods eaten while world traveling.  Nothing baby related.  Until…. There was something baby related.  She has a baby.  This is a life event, predictable part of the story line.  Do you blame me for thinking this book would be baby-free as I read about her busy restaurant life complicated only by working with her lesbian girlfriend?  Do you blame me for thinking I’d avoid childbirth related stories as I read her in detail descriptions of food and how it’s cooked?

I don’t cry over these things.  I just get so frustrated.  Pregnancy, childbirth, babies just pervade everything.  It’s an expected life event- people get married, have babies and raise children.  There are so many people not doing this that one would think we might be able to move away from this expectation as a society.  But we haven’t.  I recognize that I have met many of these expectations, but not necessarily in the time frame that was once considered typical.  I held the idea in my head that I wanted to be married by 28.  I have no clue where this idea came from, but it seemed like a good idea- old enough to have established myself, young enough to have plenty of time to enjoy marriage and start a large family.  I was an achiever growing up.  I worked hard and had some natural talent, so I often got what I worked for.  I was first in my class.  I played varsity sports.  I went to a reputable college and grad school.  I was respected at work.  I set goals and achieved them.  But there are some goals that I came to realize I had little control over.  You don’t know when you are going to meet your spouse, if ever.  There is so much luck in finding someone- a little effort, yes, but also pure chance.  So age 28 came and went without a husband.  I married at 32- so not too far off.  Still time to enjoy marriage and get started on that big family.  And here I am realizing yet again that there are some things beyond my control.  I want a family.  I want that family now.  I know I’m not alone in this- many want a family but are struggling to make that happen for many reasons- fertility, health issues, waiting for a partner.  But it doesn’t make my desire any less.  I know I should take a lesson from marrying later than I thought I would.  I did get married, just years later.  One could say I will have a family, just years later.  But there are no promises.

And so as I sat there reading the book about the chef and what turns out to be a somewhat non-traditional family, my inner dialogue went nuts.  She laments about having to run a restaurant after two of her line chefs quit while 39 weeks pregnant?  Really?  No sympathy from me because she’s having a live baby.  The loss of my baby seems to permeate every aspect of my life- going to the grocery store, friends’ celebrations, reading my book.  Nothing is sacred.  My grief flows out of my pores with the smallest bit of heat.  I wonder if this is how it’s always going to be.  Constant reminders and inner monologues about how people don’t know how lucky they are.

Happy 6 weeks, my little one

Happy 6 weeks, my little one.

I’m six weeks postpartum today.  Six weeks is officially the end of the recovery period from childbirth.  It’s the amount of time we recommend people take off from work, for medical reasons.  Physically the body is supposed to be back to normal- stitches healed, bleeding stopped, uterus small.  It marks the time we tell people it’s ok to resume normal activity- exercise, sex, work, swimming, whatever.  After today my life as a patient is no longer measured by how many days or weeks since childbirth.  After today, I am just a normal gyn patient.  I have my check up this upcoming week and after that no more scheduled appointments.  I went from seeing my midwives every week at the end of pregnancy, then almost daily while in the hospital.  Now it’s been weeks and soon it will be an unknown amount of time.  I will no longer be connected to pregnancy.

This is the saddest Saturday so far.  It feels like an end.  Most people don’t keep track of how far postpartum I am and most people wouldn’t even recognize that six weeks is the standard recovery time.  So this ending is all in my head.  But how strongly I feel this.  I’m saying goodbye to all things pregnant.  Maternity clothes have been packed away, I don’t have to have modifications when I exercise and I’m supposed to be planning an end to my maternity leave.  I am so sad that I am saying goodbye to these things.  I’m sad that no one will see me as recently pregnant anymore.

I’m projecting, I know.  I have no reason to think these things; no one has acted in anyway to make me think they’re true, but I think I’m just processing my fears.  And so many more fears I have.  I fear that people will not expect me to grieve as much because she was just a baby, even though she changed my body in permanent ways that are constant reminders that she is not here.  People are often back to work and regular life much soon after an older family member’s death.  I fear I’m not expected to grieve so much because she lived for such a short time, even though I wasn’t just saying good bye to my hours old baby, I was saying goodbye to all the hopes and fantasies I had for her growing up.  I fear that people won’t give her as much credit as an older child who dies because we didn’t get a chance to know her, even though it aches that we had to take her off the vent before we even had a chance to learn all about her.  I fear that people expect me to be ok- with work, at the grocery store, wherever- because “I’m so strong” or because I’m good at what I do, even though I am weak with sadness because the world as I know it is over.

No one ever told me that grief felt so much like fear. ~C.S. Lewis

I should be…

I should be lamenting how I’m going to leave my child to return to work.  Instead I’m lamenting how I’m going to face pregnant women every day when I have no child.

I should be preparing myself to leave my baby in daycare for the first time.  Instead I’m asking my husband to hide the now useless carseat we had bought.

I should be looking forward to questions about my baby.  Instead I am thinking about how to answer those questions without crying.

I should be framing a picture of my baby to put on my desk at work.  Instead I am wondering if people want to look at a photo of a dead baby.

I should be waking up in the mornings tired and grumpy from middle of the night nursing sessions.  Instead I wake up in the mornings, nauseous, tired and sad beyond words.

I should be wishing I had time to exercise.  Instead I am planning my day around exercise because I have no baby to fill my time.

I should be pumping my milk.  Instead I am buying new bras because the old ones were stretched out from the week-long engorgement and the ice packs I used to make it go away.

I should be sharing my birth story in camaraderie.  Instead I tell my birth story to validate that my daughter actually existed.

I should be frustrated I have no time to run to the grocery store.  Instead I wait for Chris to come home so I won’t have enter the grocery store alone.

I should be worried about postpartum depression.  Instead I am wondering how to tell the difference between postpartum depression and grief.

I should be reading “Goodnight Moon” to my daughter.  Instead I’m reading my daughter’s autopsy report.

I should be complaining that 10 weeks is too early for a mom to leave her nursing baby.  Instead I’m worried that people will think my grief is gone at 10 weeks.

I shouldn’t have the time or energy to read.  Instead I am caught up on babyloss message boards and reading blogs and articles about others whose have held their babies as they die.

I should be eagerly awaiting the birth of my niece or nephew.  Instead I worry about how I will manage my grief with the arrival of such happy news.

I should be making a baby book. Instead I am making a memory book.

I should be celebrating every Saturday that my baby is a week older.  Instead I bring flowers to her grave.

I should be holding a baby.  Instead I have nothing to ease the ache in my heavy, empty arms.

Caught off guard

I went to the dentist yesterday.  They called saying they had a last minute opening if I was interested, so I took them up on it.  I wanted to get it over with rather than have it looming over my head.  Going for my cleaning was something I was dreading because I was there six months ago and happily told them I was pregnant.  I know the hygienist keeps little notes to remind them what’s going on in their patients’ lives, so I figured I’d be asked.  I appreciate the notes- they always remember that I don’t like mint toothpaste but on this day I knew I might be cursing them.  On my ride there I was nervous.  When I arrived, it seemed like a whole new crew at the office.  My usual hygienist and usual dentist weren’t there, so I thought, maybe I’ll fly under the radar.  Silly me.   The young hygienist asked if I had any updates to my health- I answered no.  And then she said, “You were pregnant last time, did you have the baby?”  I learned from my time with the tailor that perhaps short answers might be best and to answer only the question asked.  So I answered yes to her question without expanding.  She followed with a hearty “congratulations!” which I quietly thanked her for.  “A boy or a girl?” she asked.  And I replied I had a girl.  She then moved on to talk about the weather, so I breathed a sigh of relief.  But not long after she returned to the baby- “so is the baby sleeping through the night?”  I was totally caught off guard.  I was expecting a question about how old is the baby, not about specifics.  In that case I would have said “she would have been 6 weeks,” and would see if she picked up on it.  With this question, I literally was speechless for the moment; I didn’t know how to answer easily.  Finally I decided on saying simply, “She died.”  Then it was her turn to be caught off guard.  She said appropriately “I’m so sorry.”  Then went on to tell me I’m still young (thanks, but not really)…. And then asked “was it a miscarriage?”  Again, I was a little speechless.  “No, she died.  She was near term and she lived for six hours.  It wasn’t a miscarriage.”  I’m not sure I would use the word “died” to describe a miscarriage.  She asked if it was medical issues and I said, “yes, she was sick.”  She said she was sorry several more times, which I appreciated.  Again, this exchange was an example of someone meaning well.  I’m sure, or at least I hope, that when she replayed the conversation in her head, she would have wished she said things differently.  But she was caught off guard and just like I didn’t know what to say, she didn’t either.

I was caught off guard at booktcamp too.  I’ve been going to a mid-morning class, because no one knows me there and the timing is better- fills up my morning more.  But I realized the other day that this mid-morning class is the mommy class.  It’s the moms who aren’t working who can go at 9am rather than 6:30am.  I don’t know how I missed it before, but this realization hit hard when I overheard a few women talking about breastfeeding.  “I’ve been essentially breastfeeding since 2006!” said one woman, referring to back to back pregnancies and the accompanying nursing.  For the first time I got teary eyed at bootcamp.  Seeing the newborn photos at the sign in desk didn’t make me cry, just angrily frustrated.  But hearing this, I was forced to hold back the tears.  I didn’t get to breastfeed- I had the boobs for it, but not the chance.  If Mabel were alive, maybe I’d be joining in that conversation, rather than hoping they don’t look at my red face and watery eyes.  And then when it was time to get into groups, I purposefully avoided those I identified as mommies based on their conversations.  But of course I somehow get paired up with the one visibly pregnant woman in the class.

There will be a time when I’m not so caught off guard every time I interact with strangers, though I’m sure I’ll always have my moments.  As this first month has passed and I’m stumbling through my second month of grief, I feel like I’m learning the way things are going to be.  They say that the first month you are numb.  During that time I wouldn’t have necessarily described myself as numb, but I see what they are getting at.  I was so terribly sad but I wasn’t interacting so much with the outside world.  I was insular, on my own island of grief.  All my thoughts where thinking about what will never be and what won’t happen.  It was envisioning and projecting and mourning what I saw in those visions.  It was just thoughts.  Now it’s experiences.  I’m beginning to live it- the things that won’t be, the way things will be now.  This is a whole new kind of sadness.  I’m not even in real life yet; I’ve just been testing the waters and it’s cold.  I don’t want to go in but I have no choice.  When I begin work again I’ll be jumping in.  I’ll be interacting with people all day long, many of whom will catch me off guard.  That is still a month a way.  I’m in such a different (not better, just different) place now than I was a month ago, how will I be in a month?  Will I be ready?  Will I ever be?  I am too familiar with this feeling.  I wasn’t ready for labor to start, but it had to.  I wasn’t ready to push, so Mabel could be born, but she had to.  I wasn’t ready to take her off the vent, but we had to.  I wasn’t ready to give her up to the nurse after she died, but I had to.  I’m tired of doing things I’m not ready for.

Are you pregnant?

The tailor asked if I was expecting.  I could have simply said ”No.”  Then would come the awkward beat of silence followed by an even more awkward apology.  I’m used to this.  For years I have been asked if I was pregnant when I wasn’t.  I think I’ve been asked more times when I’m not than when I actually was.  I have a little belly and I slouch which can emphasize it.  You would be surprised how many people ask that question without thinking.  When I was 5 weeks pregnant, a patient asked me and that was the only time I lied.  I told her no, because she was not going to be the first person I told!  After a question like that when I’m not pregnant, I often spent more time making the other person not feel so bad, “it’s ok, it’s ok,” when I should have been the one being comforted.  I was just called fat!  As if I weren’t self conscious enough about it.  And to be asked if I’m pregnant at less than 6 weeks postpartum, when I’ve lost 25 lbs (9 more to go til pre-pregnancy weight), having exercised almost daily (sometimes twice daily) since 2 weeks post birth, is a little cruel.  I think I’ll add a pair of spanx to my shopping list, thank you very much.

For once I had a real legitimate excuse for how I looked.  I wanted to justify my body, give myself credit for the loose skin and pouch of a belly.  So I said, “No. I just had a baby.”  Well that invites some natural follow up.  “Oh! How old is the baby?” she asked.  And then I paused, unprepared, my eyes welling up.  I was sad for two reasons.  First, the obvious, I had to admit to a stranger that my baby died.  And second, I didn’t know off the top of my head how old she would have been.  When I was pregnant, I new to the day how far along I was.  And I feel like a new mom would have that answer ready.  It highlighted again how I have no baby.  I finally responded to the tailor “She would have been one month.”  It’s almost painful to see how people react- I don’t think she even said those simple words “I’m sorry.”  She instead said, “You lost the baby? Oh, I don’t have any kids, but a long long time ago, I lost one too.  I had a miscarriage.”  How do I respond to that?  To a stranger?  I just left it.  I wanted to scream- don’t ask people such inappropriate questions, especially if you don’t want the answer!  And a miscarriage is not the same thing!  I in no way mean to minimize the sadness that comes with a miscarriage- it can be truly heartbreaking- but I simply can not compare it to carrying a baby that you know will likely die, hold her for too short a time and then tell the doctor to remove her vent so she can die peacefully in your arms and not in a warmer hooked up to a machine.  A different kind of mourning accompanies those who watch their babies die.

I know people’s intentions are good.  They want me to know that they sympathize.  They are at a loss for words, so they fill the space with things they regret or don’t even know are hurtful.  There are a lot of websites out there that tout What not to say/ What to say to a bereaved parent.  I think these in general are good.  And the babyloss community often likes to vent about the careless things people say to us.  There is some good to this sharing- it is cathartic to write what you would have liked to say in response and to be the recipient of sympathy for the careless things people say.  But just don’t get caught up in it.  I continually try to remind myself that people are simply trying to be helpful.  They don’t know what else to say.  I didn’t either until I was on this side of things.  They are sometimes making themselves feel better, because my loss affects them too.  These words are what help them make sense of this tragedy.  I’ve had a few- but not a ton- of hurtful comments so far.  I know there are more to come.  But I try to tell myself that they are trying.  And trying but saying the wrong thing is better than saying nothing at all.  At least when they are trying they still recognize that my daughter existed and the loss is real, rather than pretending it didn’t happen at all.  That said, there are some things that I hope even the most good intentioned people keep to themselves- things like: it’s better this way, be thankful for what you do have, everything happens for a reason, at least you’re young/can have more kids.  Please hold your tongue if these phrases are at the tip of it.  If nothing else, say “I don’t know what to say.” Or “I’m sorry.”  You can’t go wrong with either of those.

But Seriously?  Are you pregnant?  I am having trouble seeing what good intentions are behind that remark.  I almost wonder if that’s the worst thing someone will say to me.

Chris’s Birthday

Chris just turned 30.  He’s not much of a party person (that’s more my style) and he shares a birthday with my cousin who lives nearby.  That’s one reason I knew I might marry him.  One month into dating, we discovered this shared birthday (my cousin was my roommate at the time, making this fun fact stand out even more).  In my family we have many shared birthdays- me and my cousin, both my sisters and two other cousins, my mom and my aunt, my roommate cousin and another cousin.  It’s a thing.  Chris joining the family made the first triple birthday.  But birthdays aren’t as big a deal for him, so we usually ride on the coattails of my cousin, jumping in on whatever party she throws.  His birthday this year is a little bittersweet for me.  Mabel was due March 14 and I joked early on in pregnancy that I would be giving him a baby for his birthday.

This year I decided to try and do something for Chris alone- we have the Chicago food (a gift sent from his family) that was too much for just the two of us.  So I invited a few friends over for Chicago food- Italian beef and Chicago style hot dogs.  Deciding on who to invite was tricky, because of me.  Sometimes I get emotional, even when we have friends over.  I usually retreat upstairs and cry it out, but Chris comes to check on me.  We have some friends who are pregnant or have babies and he was worried how I would be.  At first I told him I would be fine, but after more probing from him, I was honest- I didn’t know how I would be.  I thought I’d be fine at the bridal shower but I wasn’t.  I thought I wouldn’t be fine the first time some unknowing person asked, but I was.  I’m unpredictable.  So we limited the group to a few friends.  Of the few we invited over, two other couples could make it.  It was smaller than I had hoped for him, but Chris was unfazed.  Again, birthdays aren’t as a big deal for him as they are for me.

The day of his celebratory dinner we defrosted all the Italian beef and fixings and bought supplies for the hot dogs.  We prepped, laid it all out and I baked a cake.  As we neared dinner time, one of the couples cancelled- they were moving and it took longer than expected.  I was disappointed but Chris wasn’t; the two that were still coming are good friends so we’d enjoy that.  And not long after the final couple cancelled- they were caught up in some guests from earlier that day and couldn’t get away.  So Chris and I were left with all this defrosted food and just the two of us.  We had a nice night, binging on Game of Thrones and stuffing our faces.  But I was sad.  I tried to do something nice for Chris- the first time since childbirth that I organized anything- and it failed.  We could have invited more people- some of the ones I hesitated to- and then we would have actually had some guests.  I felt so vulnerable because I had put myself out there and got this.  It reminded me of the baby shower in the bar.  Universe was trying to tell me something- you shouldn’t be going to happy hour; it’s too soon.  You shouldn’t be organizing anything; it’s too soon.  And I felt bad because it was my fault, being so unpredictable emotionally and thus limiting our guest list.  And ultimately I was looking forward to something (doesn’t happen that often right now for me) and I was disappointed.  Chris is adamant that he was perfectly happy with how the night turned out, so I’ll try to feel good about that.

I was described as a sensitive child- I cried easily and frequently.  This sensitivity grew with me into adulthood, though much more tempered.  Lately, I’m like that small child who cries over the smallest things.  Or ruminates and overthinks them.  I worry that my friends don’t want to spend time with me because I’m not fun, I’m sad and I don’t know what to talk about except my baby.  I worry that this whole “sadness” thing will get old.  I worry that Chris will get tired of being what holds me up everyday.

I know my disappointment around Chris’s dinner was me just being sensitive or projecting fears that probably aren’t true.  But I think I’m especially sensitive now that we are in a new timeframe when I am reminded of all the things we were supposed to be doing, or not doing, because we had a baby.  The day of my failed Chicago-theme dinner, there was a local Bourbon, Bacon, BBQ and Beer festival.  Tickets went on sale in December.  Considering those were all things Chris really enjoys I thought about getting him a ticket.  I didn’t because I figured we’d have a newborn at home, since it was scheduled for 10 days after my due date.  And so we were ticketless and didn’t attend the event while our friends did.  Even though the event was a disaster, as our friends reported, we missed out on the shared experience of a terrible festival.  We have an upcoming wedding, that I envisioned having the baby at my side as we got our hair and makeup done.  All these things that are supposed to be happy- birthdays, festivals, weddings- and they are, but for me they also come with a sharp pain in my side reminding me what is missing.  I am entering a new phase, transitioning from the “My baby died” phase to the “My baby died and here are the reminders that you are empty handed” phase.

The Autopsy

Friday afternoon at 3:45p I got a call from the pediatrician.  We had picked one out and met with her during pregnancy, so she was familiar with what we were expecting.  We chose her because of her reputation in the OB community and her familiarity with Down Syndrome.  She was direct, knowledgeable and caring.  The day after we lost Mabel, the on call pediatrician from her group visited us in the hospital, which was kind, especially because there was no baby for him to examine.  Our chosen pediatrician called us in the weeks following to express her condolences, see how we were doing and offer us help in the future if we needed it.  And late Friday afternoon she got her chance.  When I first answered the phone I assumed she was calling as a follow-up, but she asked if we had received Mabel’s autopsy report.  When I told her we hadn’t, she invited me in to pick it up and review.  Luckily she was in the office that was 5 minutes from my house, so I hopped in my car and headed over.  I was surprised it was back so soon because we were warned it could take months.  When I arrived at the office, I told the front desk I was there to pick something up from the doctor and gave them my name.  They asked me what I was picking up and so I said “my daughter’s autopsy results.”  Funny how these are words I have to say.  Right up there with “my daughter died.”  It’s still so surreal.

We opted for an autopsy because as I had said before Chris and I are information seekers.  And knowing a reason helps me process.  We had a very good working theory on what happened- Mabel had an unseen urinary tract obstruction that led to water back up in the kidneys, causing significant damage.  I really wanted to know if that theory was correct, to see if Mabel had any other issues and to confirm that nothing had a chance of recurring in a future pregnancy.

I am pretty familiar with medical jargon in general and have become increasingly familiar with fetal kidney terminology.  But reviewing the autopsy was at first daunting.  Essentially this is what it said:

• Mabel had Trisomy 21 (Down Syndrome) and some features that were consistent with the diagnosis
• Mabel had hypoplastic lungs and evidence of hyaline membrane disease (the old terminology for Respiratory Distress Syndrome)
• Mabel had congenital heart defects- a large atrial septal defect (hard to diagnose prenatally) and a ventricular septal defect.
• Mabel had had hypoplastic kidneys with cystic dysplasia and dilated ureters.

In short, very few surprises.  The heart defects were a new diagnosis, surprising only because she had a normal fetal echo, though heart defects affect up to 50% of children with Down Syndrome.  I don’t know if the type and size would have required surgery, but I suspect they might have.  In retrospect, I am glad I didn’t know- it doesn’t change anything and it would have caused me more worry- how would my baby survive if she had failing kidneys, compromised lungs and needed open heart surgery?  A part of me wonders if knowing would have made me come to terms with the fact that Mabel would likely die, but even with the diagnosis of heart defects, there would still have been hope.

My big focus on the autopsy report was her kidneys.  They were described as having “cystic dysplasia.”  What I wanted to confirm was that it wasn’t polycystic kidney disease- a genetic disease that could affect future pregnancies.  What I went through with Mabel was hard enough; I don’t know how I would do it again.  The pediatrician didn’t think that description meant polycystic kidneys, but wasn’t certain.  She offered to put us in touch with a pediatric nephrologist if we wanted.  I wanted to review it with my doctor and midwives first, to see if they had any input.  My doctor seemed pretty confident that they would have clearly defined them as polycystic if they were and noted that if there were any concern for future pregnancies, the doctors in the NICU would follow up.  This is true because I have seen that with my own patients.  But of course, I wanted to be totally sure.  I thought about contacting pathology of the NICU doctor we met with prenatally- but I couldn’t even begin doing that until Monday.  I am not known for my patience (but have gotten more skilled at waiting with this pregnancy).  So I consulted Dr. Google and my medical websites.  After reading the fine print details of the autopsy (description of how the cysts were shaped and how many, etc), I am confident too that they were not polycystic.  I think the technical term is obstructive cystic dysplasia, which can come from kidney damage due to obstruction.  When it’s bilateral, it’s always fatal.  And bilateral multicystic kidneys are four times more common in girls than boys.  How funny- I thought Mabel was a boy because kidney problems in general are more common in boys- but not this one!  And the dilated ureters fit that picture too- they dilated when there is an obstruction.  The best news about the obstructive cystic kidneys is that they are not hereditary.  The obstruction was likely due to the Down Syndrome and since the Down Syndrome was random, this scenario is very unlikely to be repeated.

When I first reviewed the autopsy report I was a little emotional, but not for the expected reason.  I was so concerned that she had polycystic kidneys and what that would mean for future pregnancies.  It actually wasn’t hard to read my daughter’s autopsy report; there was some comfort in it.  It felt like I was reading more of her story- like reading her prenatal records or looking at her photos.  I take comfort in it, perhaps because it is more proof that she existed and gives reasons for why she couldn’t stay.  She was a sick little baby- sicker than we even thought.

How Mabel got her name

We named our baby Mabel Cleary.  I have played around with baby names for years.  I think it’s an occupational hazard.  I witness so many people choose the lifelong names of their children and some are beautiful and some make me cringe.  Some do both at the same time.  The really popular names these days are really quite beautiful but hearing them over and over again make me cringe a bit.  And so I’ve always wanted a name for out baby that’s not too popular.  In my 16 person midwifery class there were 4 Jessicas and 2 Meg(h)ans., which demonstrated how popular names of a generation can cause some difficulty. We had to come up with nicknames for each of the Jessicas just so we could differentiate who we were talking about.

I’ve also had many patients tell me their children’s names before they were born.  I’ve gotten good at having a pleasant response even when the name is quite jarring.  I’ve had patients tell me stories about how when they announced their baby’s name prenatally, they got some negative reactions.  I didn’t want that for my baby. I did not want to feel pressure or judgment about a name that I painstakingly chose, so we kept our baby names a secret.

We had a girl’s names at the time of my positive pregnancy test.  It wasn’t Mabel.  I looked up the meaning of the chosen name when I became pregnant and found that it meant unfortunate.  I told Chris and we debated whether it was fair to call a baby a name we really liked but had such an unfortunate meaning.  When we found out our baby would have Down Syndrome, we totally scrapped the name- it didn’t seem fair.  So we played around with a few more.  We had a few boys names we really liked- including one that meant lucky.  But when we discovered I had low fluid and our baby’s prognosis was poor, we didn’t feel right about that name either.

One good thing that came out of the oligohydramnios diagnosis was it lit a fire under our feet to settle on some names.  We chose Caleb Odom for a boy.  Caleb meant loyal or faithful and Odom is a family name on Chris’s side.  I liked the meaning of Caleb because I was hoping my baby would be loyal and stick around through the pregnancy.  I was faithful to the idea that my baby might survive.  Caleb sounded right with our last name.  The name was on my list before we even found out about the Down Syndrome and when that was discovered, I could just picture our son with Down Syndrome named Caleb.  Though we really love the name Caleb, I won’t likely use it for a future baby.  Caleb was this baby’s name.  I liked Mabel because I like old fashioned sounding names.  And when I learned that Mabel means lovable, I thought it fit perfectly.  Cleary is a family name on my side.  I like names that have meaning or significance.

One week before Mabel was born, I was reading “An Exact Replica of a Figment of My Imagination,” by Elizabeth McCracken.  I’ve written about this book before because it really resonated with me.  It’s a memoir of a woman who has a stillbirth with her first and then goes on to have another baby.  I was reading this while I was pregnant, but I don’t recommend the book to those who are expecting.  It’s about stillbirth, which no woman should have to think about in pregnancy.  But my midwife had given it to me because she would listen to me talk about my fears and feelings and heard me echoing many things this book described.  I am very glad she did- I identified with the uncertainty the author felt in her second pregnancy, when there were no longer “whens” but many more “ifs.”  I also could relate to the grief she felt after the loss of her first.  I hadn’t lost my baby yet, but I was already grieving the potential loss.  I found the book so helpful because it validated so many of my feelings (and still does).  And then six days before I had Mabel, I was reading the book as I was in bed during the only night Chris didn’t stay with me in the hospital.  The author hadn’t learned the gender of her second baby and was playing around with names.  She didn’t come up with a boy’s name, but she and her husband decided on a girl’s name- Mabel.  I had to put the book down.  We had already chosen the name Mabel and it just felt so intense.  I had already felt so connected to the book, I couldn’t believe she had chosen our name too.  The author goes on to have a boy- so I wasn’t sure if that meant we were to have a boy like her or if it meant we were to have a girl because of the shared names.  The next day I was watching Downton Abbey and a small character named Mabel was mentioned.  I never really believed in “signs” before, but looking back, the universe was trying to tell me something.

That is the story of how Mabel became Mabel.  She was loved from the start and has truly lived up to her name, as my lovable daughter.

To those expecting a baby with Down Syndrome

Today is World Down Syndrome Day.  3/21 –> Trisomy 21.  Brilliant.  And today I speak to those expecting a baby with Down Syndrome.

To those with a prenatal diagnosis of Down Syndrome, please don’t despair.  I was in your shoes six months ago and made the choice to say yes- yes to having a baby with Down Syndrome and whatever that diagnosis may bring.  I know what it is like to worry about what that means.  I know what it is like to worry about each ultrasound and what news it may tell.  I know what it is like to worry about stillbirth and loss.  I understand the concern that comes with the idea of raising a special needs child. I know how it feels to wonder how your child will look and how she will be treated.  I know how it feels to comprehend that the baby you are carrying might take years to potty train and may never move out of the house.  I know the challenge of looking for day care able to accommodate a special needs child.  I understand the concern that comes with the idea of raising a medically complicated child.  I know how hard it is to navigate the new world of therapists, pediatrics and specialists, finding ones familiar with Down Syndrome.  I know how it feels to wonder if your child will need to be delivered prematurely due to poor growth, will have bowel surgery as a newborn or need open heart surgery as an infant.  I know what it is like to consider giving up your career and life how you pictured to care for your baby.  These are all normal.  And the good news is, not all these things will come true.  Some might, but most are surmountable.  Most babies with Down Syndrome live.

You will find yourself in a new community, surrounded by people who already have children with Down Syndrome and are eager to tell you how wonderful it is.  They will support you in your worries and fears, your adjustment struggles and gladly give advice on how to navigate it all.  This is club you may have never wanted to join, but you will likely be glad you did.

I tell you this because I am not so lucky to face these struggles.  My baby was one of those with Down Syndrome who did not live.  What I wouldn’t give to still be facing those worries, fears and stresses.  With all that could be unexpected with a baby, I have learned that Down Syndrome is a welcome, livable one.  You can have a warm body to hold, smiles to capture and personalities to get to know.  I was ready to give up my career and lifestyle to have these opportunities.  As I sit here with empty arms, I want you know that some people yearn for a child with Down Syndrome and might even be jealous of your situation.

We never know what the fate of our children will have.  There are many unpredictable diseases and struggles our children may face- autism, cancer, mental illness – at least Down Syndrome is a known one; we know what the possible complications and struggles may be.  I don’t pretend to know other’s circumstances and I don’t pretend that having a child with Down Syndrome, with or without medical issues, is an easy journey.  Raising a child with Down Syndrome is a journey full of worry and wonder, of fear and joy, of anger and acceptance.  This I know: Down Syndrome is not a death sentence.  I chose to commit myself to raising a child with these issues but I was not fortunate enough to take that child home.  I consider someone lucky if she goes home with a baby with Down Syndrome.  May you be so lucky.