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.