I remember it in bits and pieces, both generally and specific…we didn’t plan on going that day, they said it would take three months. But it didn’t and they called after just five days and said “Can you come this afternoon at 1:00?” So I scurried and shuffled and arranged for my other three loves to be taken care of and I called my husband and told him I would go and it’s ok that I’m alone because there “just isn’t any other way today…we didn’t have a chance to plan for this…”

And so we went, me and my babe who would turn eight months the very next morning. My babe who I just knew in my very core was different and needed me to know why. We went. Just Emmy and me…because Mamas walk hard roads with their babies even when they don’t want to face the fear of fear.

So we checked in and they were friendly and marveled at her hair (everyone does) and her eyes (they twinkle) and her smile so big and endearing (it’s her trademark). They took us back and the hall was long and unfamiliar, and they gave us a room. I still remember the room. They weighed her (“She’s so petite!”) and I smiled and agreed and then we sat in our room, and we waited a bit longer. Finally, a knock and a stoic introduction and lots and lots of questions to which I had answers and all the while a well of emotions that rolled and thundered and lurched inside…

“Why did you bring her?” “She’s not moving the way my other kids did…and they said I might find answers here.” (I brought her because I can’t sleep some nights. I brought her because I know it’s not ‘nothing’.)

“May I see pictures of your other children?” “Sure!” (They are beautiful and she looks like them…except sometimes she doesn’t.)

“Mrs. Manni, have you ever noticed that Emerson doesn’t look like your other children?” “Sometimes.” And a hot tear came from the depths and welled up but I told it to stay put.

And there was more and she was supposed to be writing but I saw that she wasn’t and I saw her eyes studied and stayed on my Emmy. My Emmy intrigued and her features confirmed. And good doctors look (really look) when they suspect. She suspected and she looked.

Then I said, “I’ve been reading about something called Williams Syndrome.”

An affirmative nod…”Yes, I think she has Williams Syndrome. I’ll be right back”.

And the door closed behind her and I pulled my babe to my chest and held her tight. I held her and then kissed her forehead like I’d done so many times before but this time I felt the truth was approaching us quickly and I had to hold on tight. And hubby was texting with his heart in his throat wondering “How is it going?” A quick reply that was something of “they think she may have this but it’s ok because she’s wonderful and it’s always been this way, we just didn’t know”.

Then five people came in and said they had some work to do. They asked me more and held her tiny hand and showed me a line there that I didn’t have and my heart raced and again I shooed that tear away for fear the dam would break. They measured and examined, they noted and talked, they walked me through their observation but I limped behind them, too much to take in… I wanted to think that things were fine and all of this came from my worried imagination. I wanted to speak up and say in that moment, “But she’s so engaging!” But I stayed in reverent silence until the geneticist said, “See how she doesn’t let me out of her sight? How she focuses on me no matter where I go? That is telling me it’s Williams Syndrome because that’s what they do.” The one thing that had given me hope until now that all was fine, the fact that she was so attentive to the world, was the very thing that was convincing them of her disability.

They showed me pictures in a book and I saw her smile on the face of another child and they told me to “keep my head and hang in there because we had to wait the seven days until the blood test confirmed”…confirmed what I already knew. I knew that day that her secret had been Williams Syndrome and nothing else. We had found an answer and I was relieved and completely terrified. I was drawn to her in a new way and simultaneously leveled as I began to feel the weight of life and the shift it was making. Because nothing would be the same now.

They recapped and gave instruction. I told myself to breathe.

They spoke of follow up and phone calls. I reminded myself to stand.

They said goodbye and shook my hand. I packed up and made the hard choice to steady my trembling hand, pick her up, and start walking.

“We didn’t have a chance to plan for this.”

------------------------------------------------------------------------------------------------------------------------------------------

Dear Emmy,

I wish I could have told myself, when you were new and I was raw with grief, that my weeping heart would be capable of intense joy if I just gave it some time.

You’ve changed from the baby girl to the big girl right in front of me. You don’t ever stop; always moving, always finding, always making messes that make me crazy. I wonder what I should write about – what’s changed and where we are going. The big picture eludes me. But I do remember your little tan feet on a sandy beach and how pretty you looked with your hair back; wispy pieces brushing your cheek and a curly ponytail behind.

I see your biggest brown eyes and the cutest mole just below one of them. It looks like a speck of the wonder tumbled out and landed right there. I see your pretty, full lips and how you purse them together when you’re thinking of what to say. Your cheeks that are thinning and your small chin that fits right in the cup of my hand. I hold it when I want to capture a moment; slow down the seconds that make you older.

I see the bouncy way you walk to the school bus in the mornings, hand pushing mine aside because you don’t need my help to be on your way. You say you’re big now. You’re 10. It’s been a decade since I sat in that cold exam room, you warm and unknowing in my lap, me watching my life flash before me; so very different than I would have imagined it.

Emmy, I have a confession to make. I fear that I would have been a very different parent if you hadn’t been born with special needs. I think laziness would have been the daily temptation, sitting back and watching life go by in a state of fatigue and surrender. Four babies can wear a Mama out and I think you’d be getting away with an awful lot of trouble; raising yourself with a little help from your siblings while I dreamed about what’s next for yours truly. Or maybe I would have been focused on the kid-race of early achievement, signing you all up for this and that, running you here and there. At the very least, I’d be checking off the boxes of milestones, moving right along with little pause for gratitude.

But our story is different. It’s more exciting. Having you has kept me from falling asleep. I have no choice but to stay in this and not give up. It’s not in the cards. I feel like we got to an imaginary final lap only to find out we had miles more to go. It’s an exhausting journey but that’s the best kind of journey, I think. When I’ve worn myself tired for the good purpose of sacrificial love that manifests in tiny hallelujahs along the way.

You keep me awake, Em.

Awake to your curious mind, trying to stay one step ahead of you but giving you just enough space to take some risks, so I don’t stifle the adventure of childhood. Awake to what you need and what the next season might bring. Awake to your questions, your songs and your stumbles, your affections your tears and your touch.

Awake to a thousand good mornings of new days and new hopes for you. For all of us.

I love you Emmy.

Now and Always,

Mom

Williams syndrome (WS) is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning challenges. These often occur side by side with striking verbal abilities, highly social personalities, and an affinity for music. WS occurs equally in males and females and in all cultures worldwide. https://williams-syndrome.org