Raising Ghosts

I didn't take any pictures yesterday, but here are my sweet girls in our old-ish house.

My family lives in a pretty-old (but not quite New-England Old) house.  It is beginning to crumble around us.  It hasn't been cared for especially well over the years.  The owners right before us were only here for a few years.  They did a lot of surface work fast, hiring off-duty buddies from fire and police to make it look shiny and new.  There is glossy black stone and dark wood veneer in the kitchen.  Not what I would ever choose, but it looks right out of a magazine.  But take a look at the molding.  It's plastic.  They didn't mitre the corners.  They just glued it to the wall.  In some places it goes all the way to the end of the wall.  In others, it overshoots and sticks out.

Measure twice, cut once, guys.

Right below the surface, everything is exactly as it was under the previous two consecutive owners: plaster beneath sheetrock.  Ancient electrical wiring behind new plug faces.  The first owners lived to old age then died here, two lifers, one right after the other.   Every time we bust a new hole in our house, we joke that we might find life savings in the wall, in the ceiling -- but they must have trusted in banks, because we've never found anything, beyond and old horse shoe and a broken clay jar in the back yard.

Outside, the house is still total working-class cottage, the original painted cedar shingles have been pulled right off and covered over with drab neutral siding, meant to approximate clapboards.  There's something about the way vinyl warps across the breath of its coverage.  It looks as flimsy as it feels.  "Forever!"  Beam the salesmen.  Bullshit.  Ours is a mess. I will not be trading out our utilitarian chain link for the popular "upgrade" of PVC pickets.  At least I can grow plants through the metal links.

When we first moved in, we joked that we were living with ghosts because of the people who had died here.  Then we brought home a ghost of our own.

Raising ghosts.  That's what it's like when your baby died.

"Just the two?"  Asks a contractor, marveling at our disaster vinyl siding.

It catches me aback when people phrase it this way.  "How many children do you have?"  Is more straightforward.  I have learned to pass that through the filter: "How many LIVING children are you raising?"  And answer accordingly: two.

But, "Just the two?"  No.  Not just the two.

"We had another daughter," I say, "But she died."

Oh.  I'm so sorry.


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We had friends in our house yesterday.  Friends I met on the internet.  I found Anastacia in a bought of frenetic research, when I was new to loss and everything was raw and confusing.  I went through a few mad research phases.  One involved days at my local academic library.  But on this round, I was just having an impulsive search on the internet for Dandy Walker Malformation.

Most parenting blogs regarding the disorder focus on children who are ULTRA high-preforming.  They almost always have variant, rather than the full disorder, and they rarely have compounding factors the way Laurel did.  Anastacia had recently learned that the son she was carrying had DWM, the full version, and compounding heart defects.  She and her husband had decided to carry to term and raise their son for as long as they could.

I followed her blog for months.  I watched the prenatal updates as they came and went.  And when her son, Ethan, was born by c-section (because of previous c-section and current hydrocephalus), he survived outside the womb.  Many babies like Laurel and Ethan do not.

I stalked Anastacia's blog so intensely, and for so long, that it felt indecent.  Eventually, I reached out to introduce myself.  I told her about Laurel.  "I know you might not want to build connection with a mom like me."  I said, "... and that's okay.  But I'd like to keep in touch with you, if you're interested."

She was interested, and we have kept up occasional phone calls and emails ever since.

We have been meaning to get together for years, but it's hard to plan for anything when your days are as unpredictable as Anastacia's.  Yesterday, the stars aligned, and the entire family, mom, dad, Ethan, and big brother Billy, came to our house on their way home from Lego-Land.

I cooked a big meal.  The kids who could build lego and talk deep sea creatures built lego and talked deep sea creatures.  Ethan watched his iPad.  We parents got to talk.

Ethan is just weeks away from 3 -- a milestone they never thought they'd make.  When Laurel's third birthday passed me by, something lifted.  I have no way of knowing how long she would have lived, but somewhere in my mind, I didn't believe she ever could live past three.  She died in her 36th week of gestation, three days before her birth.  On her third birthday, it felt as though her ghost died, too -- or at least stopped growing.  It felt, to me, as though she was no longer dead because I chose for her to die, she was now dead because of the Dandy Walker Malformation.  The endings to this story aligned in their parallel universes, and the dissonance between what is and what could have been smoothed and quieted.

I was feeling my little three-year-old ghost strongly yesterday as I held her friend, Ethan, in my arms.

It wasn't the serene scene you're imagining.

"He's like an infant, only stronger."  His father told me.  He still needs neck support, and he kicks and squirms -- and what a kick he's got.  My muscles could only stand about 2 minutes, and I was sitting, supported, on the floor.

So, not super peaceful, but incredibly special.

That's how their lives are, I think.  Hard and special.  


If you'd like to read more about Ethan and family, you can find Anastacia's blog below

Dandy Walker And Us