“Only people who are capable of loving strongly can also suffer great sorrow, but this same necessity of loving serves to counteract their grief and heals them.”
― Leo Tolstoy
It’s Down Syndrome Awareness Month and I realized the other day that I never did write down Mia’s birth story. I did write a sort of blog announcement, but that was public relations Erin talking. The face I put on like a shield. It was a cozy place to retreat to at the time. So here it is.
Mia’s birth story starts quite a while before she was actually born. It started during my 20-week ultrasound. I wasn’t working at the time, so finding a babysitter was a problem, and we brought our squirmy 2 (almost 3)-year-old along. Our ultrasound tech was very professional, pointed out body parts and a healthy heart beat. She told us we were having a girl, and we smiled and giggled because we got to have one of each. But her face darkened. I distinctly remember that. She had a sort of grimace on her face, smiled a tight smile, and said, “[The perninatologist] will be in shortly.”
He came in briskly, sat down in the chair, and got right to work looking again. I knew something was wrong. Something felt different about this time around. And then he sighed, looked up from the screen, and said, “What do you know about Down syndrome?” I remember describing it once as someone pushing all of the air out of my chest and then sitting on it. I don’t remember a lot about what happened next. He talked about soft markers, and the only way of knowing would be an amnio, and that termination is an option, but only for 4 more weeks. It went by in a blur. I tried to get out of that conversation. I couldn’t process it. I remember asking if I could talk to my OB. I just wanted to run away. And he kept telling me it wasn’t necessary, and what she said didn’t matter. I finally said I needed to think. Nate spoke up and said we didn’t want to terminate so why have an amnio? And then he said, “Good luck.”
And then I waited it out. The early blood test was not available. I was 9 months too early for that. Prenatal counseling was non-existent. I was offered nothing. No one offered someone for me to talk to (aside from my friends), no one gave me information. No one said anything at all, except, “Well, we’ll find out when she’s born.”
It was 5 months of pure torture. Grief, hope, despair. You name it, I felt it. Instead of happily buying baby girl clothes, I would just think these dark thoughts like, “Should I name her? What if she dies?” While Nate traveled, I’d sit in our apartment researching soft markers and wondering if she’d be one of the 96% of kids who have this specific soft marker and are born with a typical set of chromosomes.
And then in my desperate searching, I ran across two websites – two mommy blogs that turned the tide a little bit – Enjoying the Small Things and A Perfect Lily. I remember the first picture I saw. The most beautiful little blonde girl helping her dad wash a car. And in my head, the world was an entirely different place. If you ever wonder why I post about Mia and write about her, it’s because that moment changed my entire perspective. Sure I was scared out of my mind, but that photo made me believe, for a moment, that life might be beautiful after all. And I think that maybe someday, someone will run across my blog or my photos of Mia doing typical kid things and drag themselves out of that dark place, too.
Even though I comforted myself with these families living typical lives, I was still holding out this hope that Mia would be born without Down syndrome.
She made me wait 5 long days past her due date. She was actually due on Halloween, but I went into labor on Guy Fawkes/Bonfire Day. It was more fitting anyways. Remember, remember, the 5th of November.
Honestly, the actual birth was easy. Easier than Fynn, even though she was a big baby, just like Fynn.
They put her on my chest and I didn’t see it. I saw her blonde hair and blonde eyebrows. I picked up a hand and looked at it, and no transverse palmar crease – because I remembered that was a thing. (It was on the other hand.) I thought, “Whew, she doesn’t have it.” And for 30 minutes, Mia didn’t have Down syndrome.
Then the nurse picked her up in a strange way, looked into her face, and turned to me, “I’m going to call a NICU nurse down.” And then the other nurse arrived and the two nurses argued about whether or not they thought Mia had Down syndrome. Then the NICU nurse walked over to us and said, “You knew ahead of time, so this isn’t a surprise, but I think your daughter has Down syndrome.” I said, “Oh, well, should we just order the chromosome analysis?”
The nurse shrugged, said, “Well, I’m telling you she has Down syndrome.” And then she left.
And then we went to a normal room. The nurse, in a hushed voice, told the nurse on duty that “This is Mia; she has Down syndrome.”
The rest of the day is a little foggy. I remember being fine. I was fine. Mia didn’t go to the NICU that day. She stayed in the room with me. I sort of kept wondering if she was going to die. Like, what happens now? No doctor came to talk to me. No one examined her. I kept wondering if I should say something. But I didn’t know at the time that I needed to take on a different role. I wasn’t just a mom anymore. I was an advocate.
But I was completely fine. I was FINE. I do remember saying that a lot.
Until about 12:30 AM. Nate had gone to get Fynn and take him home to sleep. I put Mia in the bassinet, walked into the bathroom, looked in the mirror, and it was like 5 months of grief came out all at once. I can’t tell you how long I cried. So much that my eyes were almost swollen shut.
I didn’t want anyone to know I was sad. It’s the other thing people don’t prepare you for – the shame in feeling a sense of grief over your living child. I kept all the lights off in my room and wrapped the ice from my water cup in a paper towel and put it on my eyes to reduce the swelling so the nurses wouldn’t know. Silly right?
The rest of the hospital stay included being yelled at by a doctor because I wanted to breastfeed and I didn’t understand this new polycythemia diagnosis. We found out about her heart defect. I had a group of wonderful nurses and lactation consultants who took my lead (the happy face I put on so they would all start talking like normal people) and started encouraging me instead of avoiding me. The polycythemia landed her in the NICU because her blood was turning to sludge. And then…the rest.
I’ve hesitated for a long time in writing this birth story because it’s not pretty. It was not a week of unicorns and rainbows and support. It was raw and wrong. It was full of misunderstandings and pain.
But here it is. And this is why I advocate for more information. This is why I post about Mia. This is why I say yes to anyone who wants to “send someone with a diagnosis my way.” Because this birth story is not Mia’s story. It’s just the beginning, and the beginning was hard.
But then Mia came home. That’s her real birth story. When the little girl with Down syndrome became just a little girl. But you all know that story already.