Matt, Louis, and I were on a vacation on the coast of Maine when we first found out we were pregnant with our little girl. After two separate miscarriages and a subsequent year of trying Matt and I were relieved to finally learn that we would be adding another little one to our family the coming spring.
I threw up through most of my pregnancy but other than that it was, thankfully, without complications. Our daughter was gaining weight and looked healthy at each ultrasound. I even got to see her beautiful face before she was born during one ultrasound, and although I actually came home from this ultrasound asking Matt if he thought she might have Down syndrome, he reassured me she looked completely normal, and if she did have Down syndrome it wouldn’t matter. We moved on.
At my 37 week appointment, the doctor measured me and became a bit concerned about our daughter’s size and scheduled me for an ultrasound that day. It was determined that the baby’s size was fine, but that she was actually breech. We were scheduled for a version later that week to flip her. Unfortunately, the version failed and put me into early active labor. Later that evening, after trying to stop the labor, it was determined I would need a c-section.
I was rolled into the OR and within minutes I heard our daughter’s cries. I joined in, crying, “She’s here!” Our Sammie girl had arrived.
One of the nurses brought her around to my head so we could see her for a few seconds. I remember thinking, “Hm, she doesn’t look like I thought she would.” But I remember having that same thought when I first saw our son, too.
The nurse took her away to check all of the baby things and Matt continued to talk to me as I was very nervous about what they were doing on the other side of the curtain.
One of the anesthesiologists asked if he could take pictures of her for us and we gladly gave him Matt’s phone. We could hear Sammie crying but I just couldn’t wait to see her again. When the doctor brought back the phone I remember Matt scrolling through the photos for me and still thinking, “Hm, she looks different.” And then when he scrolled to the video and she opened her eyes I knew something wasn’t normal. I asked Matt, “Does she look normal?” He reassured me that she looked completely fine. I heard the nurse make a call asking for the pediatrician and knew from Louis’s birth that that wasn’t normal. It was at this point that I knew something was really off.
After a few more minutes the nurse checking her out brought her around to me so Sammie could do skin to skin. I saw her face for more than a few seconds and at this point I was certain.
I looked at the nurse and asked, “Does she have Down syndrome?”The nurse looked panicked and the entire room got quiet. The doctor stitching me up stopped and came around and very calmly said “It looks like she might have some markers for Down syndrome. We called the pediatrician on call so she can check her out and she will discuss this with you.”
For whatever reason, I felt fairly calm at this point and kept reassuring the staff and Matt, saying “It’s okay. I’ve worked with kiddos with Down syndrome before.” In my mind I kept saying this. “It’s okay. It’s okay.” I’m not sure if I kept saying this to keep everyone else calm — not wanting them to pity or worry. Or if I was saying it to keep myself calm—not wanting to be one of those moms that freaks out because I unexpectedly had a child with special needs. Either way, that was what I kept repeating to myself for those first few hours.
From there my memory gets a bit blurry. What I do remember is that the staff was incredibly encouraging and we were so thankful to be locked in a building away from family and friends because of COVID-19 in order to process the fact that Sammie had Down syndrome.
I spent that first night trying to hold myself together — trying to remain positive—but the places my mind went still give me a sense of guilt. I know now that was all part of the grieving process, but being over a year out from that day and seeing who she is and the joy she brings us daily makes those thoughts seem absolutely crazy to me.
The next morning was when all of the emotions really hit Matt and me. The day started with the pediatrician coming in to talk to us about her diagnosis. And in hindsight she was one of the greatest blessings throughout our time at the hospital. I don’t remember much of what she said, but I do clearly remember her saying, “You need to mourn the child you thought you were going to have.” That was exactly what I needed to hear and that’s when the floodgates opened.
We spent the majority of the day in tears. Throughout this entire time Sammie was a dream baby. She latched without issue. She slept with nearly no work at all on my part. And she held all of the sweetness you expect in a tiny newborn.
The tears continued to come but the staff remained so encouraging. Honestly, I don’t remember a single person apologizing to us or pitying us or diminishing Sammie’s humanity, which I have heard has been the response for many when they receive the news of a newborn with Down syndrome.
We were receiving nearly constant texts from family and friends who were lifting us all up in prayer and giving us the encouragement we needed, reminding us of the gift we had been given. I don’t know that we have ever felt so loved and I honestly I don’t know if we will ever feel that amount of love again in this lifetime. Matt and I couldn’t stop saying “people are loving us so well.”
While all of this was happening we learned that Sammie had a congenital heart defect that caused 3 holes in her heart. We also were being informed of all of the other possible health concerns that come with a diagnosis of Down syndrome. Thyroid issues. Feeding concerns. Vision issues. Hearing loss. Diminished immune system. Not only did we have to learn our daughter had Down syndrome, we also had to begin processing the fact that she had some serious health concerns—amidst a global pandemic.
But Sammie, who has been providing surprise after surprise, was doing so well — passing all of her screenings, eating well, showing no signs of concern— that we were set for discharge 2 days after she was born.
Before leaving, the pediatrician who was such a gift to us in this time came in and asked if she could pray for Sammie. She placed her hand on Sammie and prayed. And Matt and I cried. This was one of the sweetest moments in our lives that I don’t think we will ever forget.
We headed home and began adjusting to a life with our Sammie girl. Researching. Scheduling appointments. Navigating all that was new.
Later that week, as I was jotting down one of several of Sammie’s upcoming doctor appointments in our calendar, I came across a photo we took in Maine.
I stopped in my tracks.
The picture was taken the day we found out we were pregnant with Sammie. I’d seen this picture hundreds of times, but not since Sammie’s birth. It turns out that we had just received a book for Louis titled We’ll Paint the Octopus Red.
This book celebrates the relationship between two siblings — one of which has Down syndrome. And here we are in this photo — the exact day we found out about Sammie — flying a red octopus in the sky. Celebrating her existence.