D-Day

My biggest fear has been that people would view Eva as “less than,” and in turn view our grief as trivial because of her condition. Never did we ever want our child to suffer, and we understand she is free from pain and experiencing everlasting peace. But there’s still someone missing from our family, there’s the love we made room for in our hearts that now has only the heavens to point to.

Diagnosis day—D Day in the special needs community. What exactly happened on this day? We received a phone call from the geneticist explaining the amniocentesis results. A test we chose to take so we could find an answer to Eva’s abnormalities. I was 28 weeks pregnant.

The geneticist explained the duplication on chromosome 1, and deletion on chromosome 17—Miller Dieker Syndrome (lissencephaly). All I could hear was my baby will die. It took me almost a month to recognize she was probably going to live first.

We stopped with the intensive monitoring since we knew Eva’s fate. All it really did was remind me every week that no miracle would happen for her. She looked perfect on the screen to me, but we always had to go through the long list of abnormalities to see if they had changed.

Her diagnosis was so severe. I actually remember the thought I was having before the life-changing phone call. I was driving home from work hoping it was Down’s syndrome, even though I’d already cleared that blood test. If we had to jump into the genetics crap shoot, please let it be the syndrome where we get to keep her, and love her for years. The one where Max can be a big brother.

All I could hear was, “profound developmental delays,” before I asked the doctor to hold on so I could get home to Joe.

How have we made it 365 days since Diagnosis Day?

How did I ever stumble across the threshold of our home, carrying the phone, screaming for him to come listen to the geneticist break our hearts?

How did we ever get through those first black hours knowing our daughter’s fate?

How did I ever go in public pregnant with all the sweet comments about my baby that broke me from people who didn’t know?

How did I ever return to work, and still complete a book design for the printer?

How did I ever carry a terminally ill baby for two whole months and sleep at night?

How did I make it through all those doctors appointments that reminded me time and again how very sick she was?

How did we tell her brother that his baby just might not make it home? How did we utterly break his innocence?

How the hell did I get out of bed every single morning?

How did I walk through the hospital to labor and delivery with the escort who said, “Oh good, I like when people are here for happy things,” without completely breaking down?

How did I push through the fear and gracefully birth my babe onto earth?

How did I patiently wait by her bedside most days without scooping her up?

How did I find the courage to tell her it was okay to go?

How did I never wail from the top of my lungs in that hospital on the night she died, “Give me my baby back!!!”

I hate her diagnosis, this day will always be worse to me than her death because it’s the day we found out she was going to die. The night she died was when she left her broken body and at least found peace.

How did we get here, 9 months from that night?

LOVE. Love got us here. Our love for our daughter, our love for our son, our love for each other, love from our family and friends, and nurses, and doctors and strangers. Love from the infinite, and love from EVA.

Yesterday was Eva’s diagnosis day. I think I did a lot of my mourning in the days leading up to it because the actual day turned out to be okay. I rose and practiced yoga, and just moved to her playlist. I flipped the day on it’s head and put into motion goals I’ve thought about for a while now. Hugged a few women who are dear to me. We made it through the first huge trigger day in this first year of grieving our girl. And I know we’ll make it through the rest too.

{Photo is taken by Max, a few days after Eva’s diagnosis, August 2017.}