A few weeks ago, as I drove Sebastian to a doctor’s appointment, he sat in the back happily singing his “ABCs” and “Itsy Bitsy Spider.”  Traffic was slow as we were following a school bus.  The bus came to stop in front of a neighborhood.  Half a dozen adults were standing on the corner as one little girl climbed the stairs. They shouted, waved and took photos. I glanced in the rear-view mirror at my little soon to be three-year-old. It struck me how soon we would be those parents standing on the corner as my little human headed to Kindergarten.  And then the tears came.  Not because I’m sad about my little boy growing up, but because we should have been standing at the corner for three years already.  Zoey would have been in 2^nd grade.

We were on our way to an appointment with a developmental pediatrician.  Sebastian has some motor and speech delays.  Those delays along with some physical issues, led us to get him an evaluation. If you haven’t been to an appointment like this before, all I can describe it as is exhausting.  The mental load is overwhelming at times. I often leave feeling like the worst mother in the world.  We spent two hours trying to answer questions about his development.  Does he point to objects, how many words does he use, does he do xyz?  I don’t know. I defend my inconsistent knowledge of my own child by explaining that we also have a little boy 11 months younger running around and I often get the two confused. Or I’m too busy changing diapers or pulling kids off the stair railing to analyze which hand Sebastian uses more often.  At the end of the appointment, the pediatrician and developmental therapist review their evaluation and recommend further treatment.  They mentioned having genetic testing done.  And I cried again. At which point I felt the need to explain that our daughter died of Trisomy 18.  They reassured us that they aren’t looking for something so serious.  Which I know.  I KNOW he’s fine.  I know we’re doing this to make sure we aren’t missing anything.  But just hearing the words “genetic abnormality” will knock the air out of your lungs.  I can’t remove the memory of all those appointments we sat through while I was pregnant.  Where each one seemed to deliver another blow of bad news.  Where each moment stood still as we met with expert after expert laying out devastating scenarios.

I took Sebastian to daycare and he happily went about his day.

He has been in the habit of taking off his pajamas and diaper at night, though.  I snuck into his room after he’d fallen asleep to find him, once again, half naked. I rolled him to his back and put his diaper back on.  And then tried to pull pants over a sleeping toddler without waking him.  It was easy. He’s apparently a heavy sleeper once he’s out.  But, of course, a moment of panic snuck in. Was he breathing? I rested my hand on his chest and felt the rise and fall of his breath.  After his pants were back on, he rolled back to his side, stuck his thumb in his mouth and went back dreaming about whatever it is toddlers dream about.  I left his room and went across the hall to his brother’s.  Where I found another sleeping boy, his arms tucked behind his head, but one arm bare. He’d apparently also tried to remove his pajamas but gave up after freeing one arm.  After I put his arm back through the sleeve, he tucked his arm back behind his head and I had to stifle a chuckle.  There were my two precious boys, one undressed on the bottom, the other partially undressed on top. But as I turned the knob of his door to leave, the giggles turned to tears once again. I’m sure its perfectly normal for every parent to check if their child is breathing or not.  But is it normal to know the difference between a skin that is chilled to the touch because of air-conditioning and the cold that sets in after death? I knew Sebastian was fine as I tucked his legs back in to his pajamas.  He still moved with me, despite being asleep.  I changed Zoey’s clothes after she died.  And her body had begun to stiffen. I tried to hide my tears from Joe as I got into bed.  Because explaining that moment before bed just didn’t seem fair. I couldn’t though.  Reality is just too painful sometimes.  It isn’t fair to know what it feels like to hold your child after they pass away.  After they die.  But seven years ago, I did just that.  I often wonder what the boys notice—do they know I’m filled with anxiety and terror at the thought of them dying?  Do I hide it well enough that I’m a functional–and not completely insane parent?   Do I give them enough freedom to fall?  Do I over-correct and let them stray too far? I’ll be sending them off on a school bus alone soon enough. And then to college.  And out into this world that is often terrifying.  I would have moved heaven and earth if I thought I could have saved Zoey.  I want to protect my kids.  But I also want to prepare them for this world.  And not smother them in the process.  I don’t want fear to rule my parenting.  I stuff the anxiety away as often as possible and let my kids climb the stairs at the playground—hovering more closely than some parents would. If you see me at the bottom of the slide with a cushion, just nod your head and move along.

You’d think seven years in, I’d realize that grief has a way of showing up even when you think you’re doing fine.  Even in the years that you’re surrounded by the laughter of toddlers.  Even when you think enough time has gone by that it shouldn’t strike you down.  But this morning I still woke up up with a familiar pain in my chest. I’ve been short-tempered and sad.  I should know by now that anniversaries will be hard. While my day to day is filled with the joy of two little boys, the reality is my daughter still died. I know I’ll get through the day and tomorrow will be a little less hard.

We love you and miss you, Zoey Tamsyn.