Holidays

My husband and I stuck close to home for Elizabeth's birthday and Christmas and will do the same for New Years.  He refers to us as "hermits" these days and there has been a fair bit of crying and thinking of the "should have beens" but there has also been a fair bit of laughing and appreciating each other and the good things in life.  I don't think we could have handled other people on those days and am glad that (almost) everyone let us off the hook from commitments this year.  I'm also glad we stayed home because I feel closest to Elizabeth right here in our house.  Here are our stockings on Christmas morning.  Our first time around as Santa and we decided to leave Roo a beautiful pink rose:

We also bought Elizabeth a Christmas ornament on her birthday - probably this will become a tradition.  It's this whimsical little bunny hiding under a sparkly toadstool.  Not at all what we set out to buy, but it's exactly right (her other nickname is Bunny):

And - still pregnant.  Just past 13 weeks now.   I am starting to have more nausea-free mornings, which we try to take advantage of - go for a walk with the dog, make pancakes, do a household project or errand.  Afternoons are still brutal and I'm still on a 6:30pm bedtime and hubby is still sleeping on the couch, but maybe in another month or two some of that will let up.   My sensitivity to food smells has gotten worse (no cooking in the house after noon is the new guideline - thank goodness for the grill outside).  I figured the super-smell-nausea phase was coming.  When I was pregnant with Elizabeth, there was an infamous episode at 16 weeks when my husband went out to dinner and ate garlic mashed potatoes.  He came home after I was asleep and snuck into the bedroom.  I sat bolt upright and started throwing up almost instantly just from the garlic smell he was giving off.  Ah, memories.

My husband, without clearly stating his intentions, seems to be avoiding other people's children/babies.  He doesn't go with me to visit our support group friends whose rainbow baby (the preemie boy I posted about in November) is at home and doing well.  I wonder how long this will last.  Perhaps the rest of the pregnancy?  Or just for the holiday season?

Elizabeth's first birthday

Happy Birthday, little Roo.  We love you and we miss you so much every single day.

The dog totally thinks he won

So, my husband and I can't sleep in the same bed right now because of the hyperemesis.  He's graciously been sleeping on the couch for over a month now. 

The only one who's thrilled about this is the dog. 

When I creep out to the kitchen or living room in the early morning, past the couch where my husband is snoring away curled up with the dog, puppy's little furry head lifts up, gazes at me, then at my husband, then back at me, then settles down with a self-satisfied sigh.  He totally thinks that there was a contest and my husband chose sleeping with him over me.  No more dog bed in the corner of the bedroom - now he's got the man of the house all to himself! 

I'll give puppy his few months of satisfaction.  Poor guy doesn't know what's coming later on.

A little break - and a bacon story

Just when I thought I was going to be lost in a pit of despair and self-pity, I had two blessed nausea-free hours this morning.  Out of bed - ate food that did not repulse me or immediately attempt to reappear - walked outside with the puppy and admired the dew in the grass - breathed in and out without protests from my digestive system.  It was AMAZING.  Realized I will regularly feel this way again someday.  And maybe just maybe good things will come from this.

So now I'm thinking about other times I have had "breaks" that kept me going over the past year.  We have received a million kindnesses from family, friends, and strangers, but, oddly enough, the first one that jumped into my head was -

BACON.  One morning while Elizabeth was in her second NICU and we were living at Ronald McDonald House, facing another miserable day of specialists poking and prodding her and piling up the bad news while we made impossible decisions and waited for permission to hold her, instead of the usual bowl of cereal on our way out the door, we encountered some older volunteers in the RMH kitchen, cooking us all BACON (and eggs, toast, pancakes, etc.).  Apparently that was exactly what this exhausted, sleep-deprived, milk-producing, learning-that-her-only-child-was-dying, suffering-c-section-complications, grief-stricken new mother needed.  I ate a whole plate full and faced the NICU with slightly more energy that morning.  I tried to convey to the volunteers exactly how much the bacon meant to me, but I think they thought I was kind of crazy.  Kind, kind strangers.
(my apologies to any vegetarians who are completely grossed out right now)
(also, you can tell I'm still having a pretty good day, since I am able to type a story about food)

Thanks for the words of encouragement after I posted yesterday - it makes me feel so much less alone.  I would also like to apologize to those who are frustratedly TTC and think I'm being a whiny baby.  That's totally understandable and I'm sorry to cause you pain.

Reality right now

One week until Elizabeth's first birthday.  Hitting a new peak (oh, dare I hope it's the last?) of this pregnancy's illnesses.  Nightmares of how I could have saved her, how I should have known she was so tangled up inside of me.  Daydreams of going to the hospital and having them knock me out for the next two months.  Or at least give me IV nutrition so I can be spared the need to eat.

Thankful for the time we had with Elizabeth and thankful to be pregnant again - trying so hard to cling to the things I am thankful for as the darkness tries to suck me under again.

Things will get better again.  Or I'll die.  Either one sounds like an improvement on how I feel this morning.  Just please don't let this baby die, too.

Super Husband/Husband Grief

My husband has been:

sleeping on the couch since the bed shaking/food smells he brings to bed are too much for my nausea
kicking people out of our house before my 6:30pm bedtime
fetching the random foods that my stomach decides it can tolerate (quiche - now!  raw oatmeal - now!)
earning money to pay the bills
cleaning the house

And yet I give him such a hard time and about any little thing he does "wrong."  Feeling constantly ill makes me so unreasonable.  I am working to be more appreciative.  I know he is one in a million.

He has been crying more lately about Elizabeth.  Cute little girls about 1 year old set him off.  He says he's afraid that I'll get less sad over time and he'll get more sad.  He read somewhere that, when asked to draw pictures of their deceased child years after losing a baby, bereaved mothers usually draw babies and bereaved fathers usually draw kids aged the appropriate number of years.  I think this is really interesting.  Sometimes it seems he did make more long-term plans for her in his head, while I was more focused on how she would be as a little baby.  I certainly thought about her as a toddler, elementary-schooler, teenager, etc., but not as concretely as my husband did.  Does anyone else have experience with this?

Keeping Anxiety in Check

As it becomes clear to people in our daily lives (work/school friends and neighbors) that I have been sick a lot and don't appear in public after 6 pm anymore, we kind of have to tell some of them that I'm pregnant.  I barely let them say congratulations before I start in with -

Yes, we're happy, BUT -
We're not going public for a few more weeks.
We're not out of danger for a miscarriage yet.
Even when we are out of danger for a miscarriage, by definition that means we've just moved on to danger of stillbirth or preterm labor or another devastating umbilical cord accident or...
This is NOT a do-over.  We will always be missing our firtstborn child.
Please don't tell me this baby will be fine.  You don't know that.
The most important thing this month is still Elizabeth's first birthday.

After hearing all of this, two friends have said some version of:
"Don't you think it would be better for the baby if you tried to worry less?"

These people mean well and were genuinely there for us when Elizabeth died, and I can't dismiss them as clueless or heartless.  Yes, I'm sure less anxiety would be good for the baby.  Actually, I think I'm doing pretty well staying sane, thank you very much, CONSIDERING THAT THIS IS MY THIRD TIME BEING 9 WEEKS PREGNANT, AND WE HAVE NO LIVING CHILDREN TO SHOW FOR IT.  They just don't see it that way, though.

This is so hard - balancing sharing good news with trying to make sure people have some clue about what this is like for us.  Advice?

Updates

The baby boy I posted about last time is doing really well and will probably come home from the NICU in the next week!  His mom is doing pretty well, too, and is adjusting to the realities of having a preemie.  She says she feels like to some extent her body "failed again" though.  I totally understand.

I just heard about a BLM (acquaintance of an acquaintance) who had a second consecutive full-term loss.  Oh, how can the universe be so cruel?

I am sick as a dog most days and still pretty grateful about it.  Still anxious about our upcoming 10-week appointment, though.  Optimism just doesn't feel warranted yet.  Maybe someday?

Clearing out the bookshelf by our bed, I saw the following summary of the last two years:

Our friend's rainbow baby

I have this friend from our local bereaved parents support group.  Her daughter was stillborn just over a year ago, from a cord accident at 36 weeks.  They have no living children.  My friend has MS, and her neurologist didn't totally support her putting her body through pregnancy at all, let alone multiple times, but you know how strongly we need to get pregnant again after a loss.  My friend and I both got pregnant with our rainbow babies last April, just a month after we had met.  So wonderfully happy-sad and glad to be in it together.  Then I had the miscarriage.  But, you know, if my friend had had a miscarriage at that point it might have been the end of the pregnancy road for her, given her health issues.  Better me than her at that point.  I was free to try again.  She's had a normal pregnancy.  I saw her last week after her 32 week appointment and everything was looking great.

Then she suddenly went into labor on Thursday.  Her little boy was in a funny breach position, so the doctors did a c-section.  He was born at 33w1d.  Considering all of that, he's doing really well.  Over 5 lbs, breathing with just oxygen assist in his nose (not on the ventilator).  He'll be in the NICU for a while.  We got to meet him last night - strange to be back in the NICU where Elizabeth lived for the first three weeks of her life.  We spent some time visiting with my friend and her husband, too.  They are in shock.  We were so upbeat for them, to counteract their stunned family, amazed that something had "gone wrong" yet again  -  we said:

CONGRATULATIONS!  It's so exciting.  He's doing so well!  What a big boy!  What a beautiful baby!  He's alive!

Because we know the "He's Alive!" part is the whole point. 
Please send healing/growing thoughts to this precious little baby boy. 

Thoughts on birth

I read this article today.  Yes, it's about Bella Swan of the Twilight saga.  At one point, the author relates Bella's violent and bloody birthing experience to her own:

Two weeks late and over 10 pounds, the child had to be cut by a team of doctors from my body, which in turn responded by hemorrhaging massive amounts of blood. I am still stunned by the experience; like any good thirtysomething Brooklynite, I had envisioned the glowing "natural" birth, the whole holistic bill of goods that has been sold to us strong, empowered, modern women. And while I believe that those sorts of births happen and are beautiful, they are not the only sorts of birth, nor have they been throughout history. Gestating and giving birth are dangerous physical pursuits, no matter how empowered a woman is.

And I thought - YES!!  I too was sold a bill of goods, and I attempted to sell it to those around me during my pregnancy with Elizabeth.  I believed in the sanctity of pregnancy and natural birth. 
"Birth is beautiful" I said.
"I am pregnant, not sick" I said. (kind of ironic, since I had hyperemesis)
"Women have been doing this for thousands of years" I said.

Never mind that without modern medicine, at least 1 in 5 of those babies and 1 in 100 of those women didn't survive the process.  I thought it would matter *how* Elizabeth came into the world.  In the end, it didn't.  It mattered that she was ok.  But even modern medicine couldn't save her from the cord accident.  The urgent c-section done to keep her from being killed by the birth process itself?  That procedure was a blessing for our family.  It gave us three months with our precious baby girl.

I can't stand to think about how I used to sympathize with women who bemoaned their less-than-ideal birth experiences.  While cradling their nursing newborns, they shared their shame over "giving in" to the epidural or c-section, and I felt sad that they had been robbed of a beautiful beginning with their child.  Now I want to slap people like that upside the head.  Who gives a fuck about the start?  It's the lifetime that matters.

And now, to dispel a bit of my anger, my current favorite picture of Roo.  She made this cute little face when jostled from a comfortable position.  It was her way of letting you know she was a little displeased.  Elizabeth had a lot of spunk, from the way she acted during pregnancy, to the way she fought her injuries and illnesses:

Creeping up on 7 weeks

We not only saw the heart flickering at the ultrasound yesterday, we even HEARD the heartbeat!  YAY!

But I had done such a good job preparing myself for the worst that I didn't know how to react to the best.  We got in the car and I started crying and my husband asked me why.  I was crying for a million reasons - relief, terror, nausea, grief - but for some reason what came out of my mouth was "This baby isn't Elizabeth."  Why did I say that?  I don't really think that way.  This is not a do-over.  We are trying to provide a sibling for Elizabeth, not a replacement. 

I feel very confused.  I just don't believe in this baby yet.  Right now my primary feeling is an intensified emptiness, missing Elizabeth.  I am grateful for this pregnancy and willing to wait for the joy that might come, if things continue to go well.  I don't believe much in first trimester hopes right now, since the miscarriage was our most recent experience.  But I'll continue to feel kind of glad every time I throw up. 

Two brilliant ideas

I am getting sicker by the day - physically not so fun, but psychologically great!  Very twisted.

This morning I had two brilliant ideas:

1.  To help me deal with unresolved anger toward those whose support this year has been underwhelming (but who I cannot cut out of my life for some reason) and also to acknowledge those who have been our rocks of support, I propose doing a holiday card this year with a spot at the bottom that says "Your grade for behavior toward our family this year is ____."  to be graded on a typical A through F scale.  Many people will get an A (or even A+).  Some people will get an F ( or even F-).  The teacher in me can't wait for the first phone call from a B student asking if they can do any extra credit to raise their grade.

2.  If a miracle occurs and this pregnancy goes far enough for me to show, I want to have an "Inappropriately Honest Maternity T-Shirt Making Party" during which we can make shirts for me that say things like:

Don't be an idiot and ask if this is my first child.  My first child died.

This baby's big sister Elizabeth is in heaven.

Bereaved Pregnant Lady - Stay Back! 

If you touch my tummy, I'll grab your boobs.  

Don't worry - I'll only follow through on #2. 
Any shirt ideas to add? (by the way, that last shirt idea above is a threat, not a proposition)

Thinking a lot about puking

The spotting stopped.  The pregnancy is still on as of right now.  I have told the bare minimum number of people in my life about it, mostly because I still have such a hard time believing.  Don't get me wrong - I love the little spark of life, but I don't believe it will turn into a real baby that we get to love and plan a future with.  I pulled out my "Pregnancy Week by Week" book, to follow along and be happy for each little development, but with not much expectation that it will lead anywhere.

BUT - the first wave of real nausea hit me this morning,  and I feel such gratitude! and  -almost - nostalgia.  I don't know if I've written about this before, but I had Hyperemesis with Elizabeth's pregnancy.  By week 10, I often couldn't keep down anything, even water.  I ended up losing a lot of weight, on modified bed rest to avoid hospitalization, taking medicines that were originally meant for chemotherapy patients.  It was bad.  At the time, it was the worst thing I'd ever been through.  It's still the worst physical thing I've ever been through.  Basically, it felt like bad food poisoning combined with a terrible hangover, every day for nearly four months.  Don't get me started on the well-meaning idiots who would hear I was sick and ask if I'd tried sipping ginger ale.  That's a little like recommending a band-aid for someone who just had their hand chopped off.

Now I welcome the first signs that we're headed that way again.  Maybe it means this baby is going to be strong enough to make it to term, while we monitor fiercely for any signs of umbilical cord problems.  With Baby Bean (our miscarriage in June), I barely felt nauseated and only threw up once the whole 10 weeks I carried him.  I believed people when they said, "Well, maybe the world is finally cutting you a break" - but in my heart I thought it might be because the pregnancy just wasn't strong enough.  And I was right.

So, yeah, I'm strangely happy that food is starting to repulse me a little.  That's messed up, right?  Pretty sure I won't be so excited by the time I'm projectile vomiting the anti-nausea meds and admiring the broken blood vessels all over my face.  I got through it once.  I can get through it again.

Halloween

I'm making the best of this.  I made puppy a lion costume and am dressing myself as a lion tamer.  I even sewed fake flames on a hula-hoop.  We are going to a doggie costume party this afternoon at puppy's doggie daycare/boarding place.  (As an aside, I realize how very Southern California the phrases "doggie costume party" and "doggie daycare" are.  Stuff like this didn't exist in Lake Wobegon where I grew up.  Dogs just ran around the yard and dug holes and killed rodents.)

But it fucking sucks.  This was supposed to be Elizabeth's first Halloween.  While I was pregnant we were already talking about costumes.  Should we be the Incredibles?  The Flintstones?  Two chefs with a baby lobster in a pot? A hen, a rooster, and a chick?  The possibilities and potential for cuteness were endless.  Instead, she's dead, my husband is away on business, and I'm doing a family costume with puppy.  Thank goodness for puppy.  He loves his costume, as you can see:

To tell the truth, we did sneak in a little costuming during Elizabeth's life, like the baby polar bear snowsuit.  Not enough, not nearly enough for a lifetime, but at least it was something...

See the baby polar bear paw and ears?

It will take more than this to destroy me.

Woke up this morning to a tiny bit of spotting.  Cried for a few minutes, howled "Why Me?" at the world.  Then got dressed, took the puppy to the beach and laughed at his antics while breathing in the crisp fall air.

Because I know I'm strong.  I've been to hell and back and lived to tell about it.  I've been broken beyond recognition.  I've held my daughter's lifeless body against my chest and contemplated whether to join her in the great beyond.  It will take more than another miscarriage to destroy me.

Elizabeth's cord accident and death made me feel like a pathetic tragedy, a marked woman, an object of pity and shame.  But through all of that, I learned that I am actually strong, self-reliant, and resilient.  Sometimes I hardly recognize the person I was just a year ago.  I finally grew up when I became a mother. 

Officially Pregnant

Pregnant!  It still feels very temporary, and fraught with peril at every turn. 

But I am a little excited, too :) 

I'd like to apologize for the stab of pain that this news causes some of you.  I've been there (and quite honestly expect to be there again).   Hugs.

The Emotional Rollercoaster Continues

Too much going on right now to really get a handle on...

1.  Am I pregnant?  Hard to tell.  Very very faint positive on the home pregnancy tests for the past three days - not getting darker though.  No period.  Even if I am pregnant, will I stay that way? I had a dream last night in which I told someone that Elizabeth died and then we had a miscarriage and then we had a chemical pregnancy.  I guess I'm anticipating our quickest unhappy outcome yet.

2.  Elizabeth's first birthday is approaching (Dec. 20) and we haven't settled on a plan for what to do.  We were going to serve a meal at Ronald McDonald House that day, but now I'm wondering if we should do that a different day.  I might not be functioning well enough on her birthday to be in public or witnessing a bunch of families in crisis.  Maybe just simple cake and balloons and walk on the beach is more appropriate for her birthday.  I keep crying when I think about it.

3.  Just dropped a whole group of college friends by removing myself from the group email list that's been going since we graduated college 12 years ago.  I have so many wonderful sources of support in my life that I just didn't see the point in sticking around a community that has failed to be minimally appropriate in their response to Elizabeth's life and death.  Looking forward to never again reading their boastful baby updates and petty complaints, which they use to fill the ringing silence that greets unhappy news.  Felt really good, but a little scary too.  Hope that when tragedy inevitably strikes one of their lives they know they can reach out to me and find support.

4.  My husband just left for a ten-day business trip.  In fact, he's been away more than home this fall.  It's been hard on our marriage, which was (obviously) stressed to begin with.  But we're getting through it.  The other day we were driving home and saw a woman walking with two small children.  As we passed her and saw her hugely pregnant belly, I yelled "Really?  Is that really necessary?" and my husband yelled "Fuck you, too!" (don't worry, she couldn't hear us).  WOW did it feel good to both be on the same page at the same time.  This grief process is so different for men and women and we so often miss each other.  Of course, I guess it's better to trade lowest points so we can pick each other up.   He's my rock of support.  Last night on DWTS Martina McBride sang a song called "I'm Gonna Love You Through It."  I'm not usually a sucker for sappy country songs, but this one was talking about our marriage:

When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it.

And when this road gets too long
I'll be the rock you lean on
Just take my hand, together we can do it
I’m gonna love you through it.

(context is young mother with cancer, not infant loss, of course, but it still hit home)

Thanks for listening.  Guess this post is more like a journal entry than anything else.

Here's my current favorite picture of Roo, sleeping and cuddled while I read a magazine, two days before we left the NICU.  This was my first taste of more peaceful days to come, the eye of the storm:

Changed my profile name

Just thought I would explain why my profile name went from being first name to some initials.  I've become a bit paranoid that people from my "real life" will find this blog and I'll lose the ability to speak freely.  I did a google search that was some combo of my name and Elizabeth's name with key words and my blog popped up, so I'm hoping the profile name change will get rid of that.

nothing else to say

Why isn't my baby here with me tonight, laughing and crying and crawling and living?

The first time I held Elizabeth outside of me

Towards the very end

This is a love story, and like all great love stories, it is a story of loss.

A friend just send me this New York Times article.  The writer's son is dying from Tay-Sachs.  It hit me hard.  I am a babylost mother but I was also the mother of a terminally ill child for three months.  Ours was a complicated journey from wide-eyed pregnant innocents to bereaved parents, not the express train that most of my babylost friends took.  I will always be grateful for the short time we had to love Elizabeth on this earth.  The weeks with her at home were the most precious of my life.  I feel guilty just writing that, like I'm gloating over people who didn't get that chance - who saw no heartbeat on a monitor.  But why should I feel guilty?  Weren't we all supposed to have a lifetime together?  Yes, I covet those three months, even as they were the worst of my life.  It's been almost a year since Elizabeth was born but I still struggle every day to process what has happened.

I think I might be pregnant again even though the test I took this morning was negative.  I feel different.  I am unable to picture us ever having a living healthy child, though.  That's just not our story.  I have no faith anymore. 

In Remembrance

Altered Reality

I'm doing pretty well today.  Pregnancy and Infant Loss Remembrance Day is Saturday and I'm organizing friends and family to light candles for Elizabeth.  I usually feel better when I'm in the middle of an Elizabeth-related project.  Motherhood is supposed to be *active* and involve a lot of work, you know?  Plus it's mid-month, so I feel optimistic about getting pregnant again soon.  And work/school is going decently well.  And I'm busy making Halloween costumes for three different dogs (they will be a lion, a supervillan, and a bat).

But for some reason I am remembering when I wanted to kill myself, a few weeks after Elizabeth died.  One evening, I became completely convinced that she still needed me, wherever she was.  Sure, anyone could change her diaper and give her medication on schedule, but who was pumping milk for her?  Who was monitoring her breathing to figure out when she needed her nose or mouth suctioned? Who was watching her face and hands for the subtle signals she gave when she was in pain?  SHE CAN'T CRY - SHE NEVER HAS - NOT SINCE SHE WAS BORN - YOU HAVE TO PAY ATTENTION TO KNOW WHEN SHE NEEDS SOMETHING!!  Who was doing these things? 

Clearly, I needed to follow her to where she was and take care of her.  My bereavement counselor says this kind of altered reality is a hallmark of severe postpartum depression.  A friend who lost her father after caring for him through a long illness said she had similar fears about his care in the afterlife.  It was scary.  I had a plan for how I would die, and I was working up my nerve to follow through with it when - thank goodness - a more logical part of my brain kicked in.  I told my husband what was happening and we talked it through and came out the other side of the episode just fine.  But it was scary. 

Nothing like that has happened since - no more altered reality.  Sometimes reality itself weighs me down unbearably, but that's just the nature of our grief I guess.

Missing Roo

We usually called Elizabeth by one of her two nicknames - Roo or Bunny. "Roo" came from doing Kangaroo care in the NICU.  The source of "Bunny" is unknown.  These were definitely not the nicknames we had in mind when we picked the name Elizabeth, but they stuck.

Bunny, Bunny, Bunny - oh, I miss you, Bunny.  Where are you?  That's what I hear myself saying when I can't stop crying.

Good night, Roo.  We love you, Elizabeth.  We miss you.  That's what we say after we read her poem every night.

One of my favorite Elizabeth-at-home memories was overhearing my stepfather talking to her while changing her diaper (he didn't know I was listening).  He's a wonderful man who provided a stable home and raised me through my teens.  However, he's not really fond of babies or nicknames.  But he was talking away to her and calling her Bunny.  That's how lovable Elizabeth was.

Anyway, I missed Roo a lot today.  We went to the annual avocado festival.  Last year I was in the third trimester and too tired, so we skipped it.  I remember thinking we'd be taking our daughter to it the following year.  That she wouldn't be alive today never ever entered my mind. 

Kanga-Roo care time in the NICU

Innocents

"Innocents" - finally, the I have the right word to describe people whose lives have not been touched by tragedy.   I found it in the book "Losing Malcolm" (highly recommended).  Since losing Elizabeth I have become very aware of innocents in our lives, in their different incarnations:

Some innocents sent a card or flowers and then turned away from our grief because it was unfathomable to them.  I understand.  I was an innocent like that once upon a time.

Some innocents are charming in their naive optimism and failure to think others might have suffered tragedy.  These are the acquaintances  in our lives who saw us months after Elizabeth's death, when there were clearly no baby-ish clues about us and asked cheerfully how the little one was doing.   These are the pregnant women who glow with the innocent belief that babies don't die in our modern society.  They are sweet and mean well.  They even make me a little nostalgic for when I was more innocent.

Some innocents mistakenly believe they have suffered tragedies.  I know they just want to connect with me, but please please please don't act like the death of your 80-year-old grandmother is in the same league as the death of my 3-month-old baby girl.  Generations are supposed to die in a certain order.  Death of a loved one is sad, hard, and life-changing, yes.  Not always a tragedy though.

Some innocents are obnoxious in their belief that tragedy will never happen to them because it hasn't  so far and because they are responsible people.  They often ask subtle leading questions trying to figure out where we did something wrong on the way to Elizabeth's death.  Or they make breezy statements like, "our children's births are quick and easy" - yes a 9-month pregnant mother of two said this to me recently.  And she knows what happened to Elizabeth.  Cord accidents don't scare her because, well, her children's births are quick and easy, didn't you hear?  These people make me see red.  They make me feel judged and marked.  Maybe I'll call them "ignorants" instead of "innocents."

Crazy Lady on the Beach

Yeah, I'm talking about myself. 
This happened last week, and I keep thinking about it:

I'm on the beach for a jog with our puppy, and he starts playing with another puppy.  I stop to take a stretch break.  The other owner is a friendly woman with a sleeping baby girl (about six months old) in a Baby Bjorn.  We chat about our dogs and how nice it is for them to socialize and play at a young age.  An awkward silence follows.  It's perfectly clear that now is when I ask about/admire the baby.  I am having a pretty rough day and realize I can't do this without crying.  Awkward silence continues...puppies continue to chase and wrestle...I stare out at the waves, feeling rude.  Then I feel mad that on top of the mountains of other pain, now I seem like a rude person.  I am not a rude person.  I am a grieving mother.  So I decide to face it head on.

Me:  I'm sorry, I must seem rude.  It's just that my daughter died recently and I have a hard time with people who have babies.  I don't know what to say to you.

Her:  Oh, wow.

Another awkward silence.

I guess she didn't know what to say to me either.  I called the dog and we jogged off down the beach, me sobbing.  We stopped later so I could write Elizabeth's name in the sand, as usual. 

Puppy kept a close eye on me for the rest of the day:

Elly loves Elizabeth

One of my college friends has two kids,  Elly (4) and Tad (2).   Elly's mom has proven to be a one-in-a-million true friend this year in so many ways - small (cards and phone calls) to large (she flew all the way across the country to come meet Elizabeth during her six weeks at home).  I'm lucky enough to have a few friends who are this amazing.

Elly was interested in Baby Elizabeth from the beginning (Elly's full name is Elizabeth, which definitely helped).   Elly's parents didn't hide Elizabeth's existence or her illness, translated into preschool language, and answered her questions as best they could.  My favorite story has to do with Elizabeth's feeding tube.  Elly saw a bath picture like this one day (she liked to look at Baby Elizabeth pictures):

 
and wanted to understand the feeding tube.  Elly's mom said, "You remember I told you that Baby Elizabeth can't swallow, right?  But she needs to get her mommy's milk into her tummy, so the doctors put this tube and milk goes in through that."  Elly thought for a moment and then declared this a good idea by the doctors and moved on to more pictures.  As in, she dealt with it better than many adults.

Here is a picture of Elizabeth reading the Valentine's Day card Elly (and family) sent:

At one point while we were in the NICU, Elly painted a picture for us that she titled "A picture of Baby Elizabeth for your room" - it is a beautiful abstract mess of a rainbow.   It still hangs on our wall and makes me smile.  Somehow the sweet love of little Elly for my baby girl means so much.

Elizabeth's exercises

We were trained at the hospital to do physical and occupational therapy with Elizabeth daily, and my husband in particular really loved this.  When he meets friends' babies, he sometimes starts doing movement exercises with them and explaining about Elizabeth.  This happened again yesterday.  He is such a good Daddy.  When we were in the NICU learning about Elizabeth's prognosis, he accepted the new reality faster than I did and dove in, showing me how we could be good at - and find such joy in - being the parents of a special needs child.  Maybe it wasn't what we had planned but she was our precious baby girl.  We saw what we wanted to do for her - no shortage of love or therapies or encouragement or acceptance.

The problem was, Elizabeth wasn't just special needs.  She was dying.  WHY WHY WHY?    Over the course of her short life I went from pitying parents whose kids are in wheelchairs to envying anyone whose child can interact and communicate love and joy.  The whole damn Universe is a different place than I thought it was just a year ago.

I can't resist adding a photo of Elizabeth doing her exercises with her Daddy one day at home.  Doesn't she look excited?

To My Pregnany Friends

Remember me?  From prenatal yoga and childbirth class?  I know you're busy with your healthy nine-month-olds, but I'd appreciate a moment of your time.  When someone loses a baby, it's appropriate to give a little more support than you have given.  I know we were never BFFs, but we did share some intense stretching experiences, graphic videos, and frequent bathroom breaks.  Yes, our friendships were based on sharing a common experience, and now that's out the window.  Perhaps you are looking for friends that are a little less...bereaved.  That's ok, I'm looking for friends who are a little less...clueless.  I don't want much, but a quick check-in to say you're thinking of us would be awfully nice.

Even you, the one pregnancy friend who dropped in after Elizabeth's died but unfortunately said, in response to my comment that we weren't sure how long to wait until trying again, "I know - it was hard to figure out how long to wait to get a kitten after our cat died" - I'd even like to hear from you.  I could tell from the look on your face that you were sorry about that comment as soon as it came out.  It's ok.  Infant death makes everyone awkward.  And let's be honest - you and I are academics so we already had a head start on the awkward thing.

In the end, I don't really blame you all.  The old Sonja might have acted just as you are.  Hard to say.

Controversy

A lively (and mostly civilized) debate erupted today in my online support group.  One member posted about her brother and sister-in-law's recent decision to abort after finding out the baby had Downs Syndrome.  She was heartbroken by their decision, desperate for her own child to be living.  Some members of the support group were offended by her reaction, thinking it was judgmental.

I didn't wade into the controversy, but it took me back to our pregnancy with Elizabeth.  At 20 weeks, my bloodwork put her at a 1-in-50 chance for Downs.  We declined the amnio.  I had felt her move for weeks and we had watched her dance on the ultrasound.  There was no way we would terminate no matter what we learned.  With our second pregnancy we said no to the blood tests.  If there was an elevated risk of Downs Syndrome for baby Bean, we didn't even want to know.  Whatever happens, happens, we said.  Unfortunately, what happened was a first-trimester miscarriage.

And this brings me to my own urge to spark controversy in my online support group.     Our community is often called "pregnancy and infant loss" all lumped together.  That's a big range, but it's taboo to suggest that some losses are different than others. What's the point of comparing tragedies?  Well, for one thing I don't want a mother with two living children who has suffered a single first-trimester miscarriage thinking she understands my pain.  My bedtime routine involves reading a poem to the ashes of my only child, which very few people can really wrap their head around.

I have been pregnant twice, but I have no living children.  I try to explain the difference between my two loss experiences and the best I can come up with is:

Losing Elizabeth was like having my leg cut off.  I am learning to function again in this new form but I will never be whole again.  I know that my babylost friends who have experienced preemie losses and stillbirth feel similarly.

Losing baby Bean during the first trimester of pregnancy was like breaking my leg.  It was painful and scary and sad and will leave a permanent mark.

These two things are fundamentally different.   There, I said it.  Fundamentally different.

But then I think - what about multiple miscarriages, infertility, that whole world - that seems like it's own circle of hell.  Please don't let me go there next.


I am drawn to make these comparisons but I really don't know if they help or hurt.  Or if they are just part of the grief process and figuring out my new relationship to the whole world.

Poor-Me Day

It's usually a poor-me day when I find out that once again we didn't get pregnant this month. That's today.

Yet I have these stupid fantasies I'll be like one of those TLC women - "I didn't even know I was pregnant until I went into labor!" - and somehow I'm magically actually with child (and maybe headed for an entire 9 months that don't end with a fatally injured baby) despite the negative pregnancy tests and period that just started.

My brain can't handle how horribly the universe shafted our family, so it turned to optimism? This makes no sense.

Bringing Elizabeth Home

It was the most horrible decision a parent could ever have to make, but when Elizabeth was five weeks old, living in her second NICU, we started to say no to surgeries. Every doctor wanted to fix a different little problem but nobody was claiming they could make her well again. Her brain was too damaged by the umbilical cord accident. Best-case scenario was a few months (maybe years?) of life with no hearing, almost no sight, no ability to eat or breathe unassisted, no muscle control... She might have lived a little longer with more surgeries, but it would have meant being hooked up to machines that would limit her ability to move and interact - and perhaps never leaving the hospital at all. Thankfully we had doctors who heard us and believed us when we said, we just want to take her home now. They helped us do that.

Home, where Elizabeth could be held 24 hours a day with no wires or tubes.

Home, where nobody pricked her heel daily.

Home, where my husband or I could get undressed and take a bath with her in the big tub, instead of sponge-bathing her under bright lights in the middle of a sterile room with hovering nurses and beeping machines.

Home, where she could get to know her grandparents and other admirers.

Home, where we could keep her warm with skin-to-skin cuddling and cute homemade hats, not heat lamps and baby incubators.

Home, where we could give her more consistent care than a new nurse every 12 hours ever could.

Home, where on good days we could go for a walk to the beach and stick her fingers in the Pacific Ocean and let her feel the sea breeze in her hair.

Home, where she could smell the flowers growing in our garden.

Home, where we could cuddle on the couch as the breast pump took milk out of me and the feeding pump put milk into her.

Home, where we could focus on her chubby cheeks and adorable faces and tiny noises and ability to cough (sometimes) and poop on new outfits (many times) and sometimes even open her eyes and focus on us(!), instead of always dwelling on what she could not do.

And we did all of that for six wonderful weeks.

Home, where she could die with us in our own bed while we sang her songs and told her stories and assured her that she was the most beautiful, most loved, most wanted baby that ever was conceived.

And we did that, too.

Trying Something New

It's been just over six months since my only daughter Elizabeth died. She was three months old, a little chubby-cheeked love of a baby girl. I have a wonderful husband, good support from family and friends, bereavement counseling when I want it, an adorable puppy who takes me for daily walks on the beach...all important, but I guess I need another outlet for my grief, another way to publicly mourn. I make my daily lurking rounds on the babylost parent blogs. So much comfort has come from reading, but maybe there's comfort to be found in sharing, too - guess I'll join in now and see.