“For seven years, our family of three enjoyed a close bond until we received the joyful news of a new addition to our lives. Our journey to conceive a second child involved various methods, such as fertility drugs, laparoscopic surgery, and unsuccessful rounds of IUI (intrauterine insemination). Despite our efforts, we reached a point where we decided to halt the pursuit. Our beloved daughter, who longed for a sibling, understood that it was a challenging endeavor for us.”
In the summer of 2016, I experienced sudden back spasms that left me feeling nauseous. A strong intuition prompted me to take a pregnancy test, and to my delight, it revealed a positive result. I immediately called my husband, and we were overjoyed.
As the weeks went by, my anxiety grew heavier with each passing day. The journey to conceive had been challenging, and I couldn’t help but worry about the well-being of our precious baby. It was a constant gnawing feeling in my gut, unrelated to morning sickness.
We began regular visits to the obstetrician, and the ultrasounds showed everything was normal. At the 12-week appointment, we received reassuring news about the baby’s facial bones, which significantly reduced the chances of Down Syndrome. While comforting, it didn’t completely alleviate my concerns.
I had prepared a social media post to share after this appointment, but fear held me back. Seeking courage, I reached out to my cousin who encouraged me, assuring me that everything was fine and that the baby was healthy. With a click, I shared the post, and the comments started pouring in.
I woke up and got out of bed to begin my day when I suddenly started experiencing heavy bleeding. In a state of panic, I called out for my husband and we immediately reached out to my mom and sister. Overwhelmed with fear and intense cramping pain, I collapsed to the floor. This was the reason behind that sick feeling I had. Deep down, I knew something was amiss. The medical diagnosis revealed a subchorionic hemorrhage, where blood becomes trapped between the uterus and gestational membranes. My entire family rushed into my hospital room as the ultrasound showed a strong and steady heartbeat.
The remainder of the pregnancy was quite eventful, to say the least. We were overjoyed to learn that we were expecting a baby girl. The 20-week anatomy scan appeared normal, but a persistent tongue popping in and out caught my attention and kept me awake at night. Due to my young age and low risk for Down Syndrome, genetic blood work wasn’t conducted. As a pediatric nurse, I drove the doctors I worked with to the brink of insanity, constantly seeking their opinions. I turned to Google at every opportunity and called my mom every day, desperately hoping she would tell me that I was being irrational. They all reassured me, saying, “Yes, Meg… the baby is healthy, stop worrying.”
Throughout the pregnancy, I didn’t gain much weight, and my belly remained on the smaller side. The baby’s growth began to slow down, raising concerns. Stress tests and ultrasounds were ordered twice a week, and with each passing week, the baby’s condition became more precarious. Towards the end of the 36th week, the ultrasound revealed low amniotic fluid levels. The medical team informed us, “Happy Birthday, Baby!” I was scheduled for induction that night; our little one needed to come into the world.
I felt incredibly nervous, not because of the pain of labor or the prospect of having a newborn once again, but because of the uncertainty surrounding her well-being. I had an intuition that something was wrong. Throughout the night, I experienced contractions, and the following day, I was prepared to push. With just two gentle pushes, Bella Danielle made her entrance into the world, weighing 4 pounds and 3 ounces.
The doctor placed her on my chest immediately, and that’s when I noticed it: Down Syndrome. A wave of sickness washed over me. The nurses gently lifted her to clean and measure her, all the while whispering to one another. In the background, my husband was on the phone, informing our family of her arrival, and the doctor was congratulating me. Yet, all I could hear was that persistent whispering.
Desperate for answers, I reached out and grabbed a passing nurse’s arm. “What’s wrong? Is she okay?” I stumbled over my words. She hesitated before responding, “Congratulations, she’s beautiful!” I felt a sense of cowardice in her hurried words. The nurse handed the baby to me before quickly leaving the room, as if she were handling damaged goods.
Our family entered the room, brimming with joy. They passed the baby around, speaking to each other, but I couldn’t hear their words. Only their lips moved, and I struggled to breathe and maintain focus. Why weren’t they asking me what was wrong with her? Why weren’t they feeling sadness? Couldn’t they see what I saw?
We were taken to our room, and we were informed that the pediatrician would soon come to examine the baby. I couldn’t recall this experience with my oldest child, but it didn’t matter at that moment. I stared at her face, noticing the prominent tongue that barely fit in her mouth. I repeatedly asked my husband, at least ten times, “Doesn’t she look like she has Down Syndrome?” He insisted that I stop being ridiculous.
Then the pediatrician entered the room, and my heart sank into my stomach while trembling with fear. I will never forget her words. “Your baby is beautiful and perfect… Now, during the examination, I did notice some traits commonly associated with Down Syndrome. She is healthy and beautiful. We’ll need to do testing to be sure.”
I couldn’t find the tears. My husband kept asking me repeatedly, “What does this mean?” He broke down. I stared out the window, wondering how I ended up in this situation. I didn’t want to hold her, feed her, or even look at her. I was furious with God. I considered myself a good person, and yet He did this to me. This wasn’t how it was supposed to be. What do we tell her sister? Adoption even crossed my mind because I couldn’t picture her with us at home.
The rest of my hospital days were a blur of tears and hearing the staff say, “I’m sorry for the devastating news you received…” I filled out paperwork for early intervention and had to speak to a social worker who reminded me that my feelings were normal. I wanted to punch her, as if she knew what any of this felt like. My husband worked the entire day and only came back at night. We didn’t talk. I was rude to the photographer who wanted to take newborn photos. I felt numb and just wanted to go home.
We were discharged in a snowstorm and had to go to the cardiology office to check her heart, one of the health risks associated with her “new diagnosis”. I sat in the waiting room, wearing my new mom diaper, with swollen eyes and a hospital bracelet. I wasn’t ready, nor did I want to be, a special needs mom. She had three small holes in her heart, and the doctor informed us about the types and the probability of them closing on their own. We left but had to follow up again in six months. Add it to the list.
We arrived home, and her sister fell in love, even after we told her. It didn’t matter to her. All she saw was the baby sister she had always wanted. I was so thankful for her in that very moment.
Bella’s genetic blood work came back confirming Trisomy 21, making it undeniably real. It was at that moment I realized I had to gather my strength, not just for myself but for my husband and our girls. He had been the rock of our family, but now I needed to step up because he was grieving.
Strangers began visiting our home on a weekly basis — physical therapy, speech therapy, and occupational therapy. We followed their guidance diligently, going above and beyond. We were determined to help Bella reach her milestones on time, or at least close to it. We pushed her. As we adjusted to this new life, I started feeling proud to be a special needs mom, despite the stares and awkward questions in public. “Why does her tongue always stick out like that?” “Why isn’t she walking yet for her age?”
I brought her along to my dermatology appointment, and she slept peacefully in her car seat throughout the visit. When the doctor entered the room and saw her, she remarked, “Wow, she has Down Syndrome, huh? You’re a good person for keeping her.” I struggled to hold back my tears and told her that I was the fortunate one, not Bella. The doctor cried, I left, and we never crossed paths again.
I entered into “advocate like a mother” mode. I wanted to proclaim her worth every single day. We affectionately call her Bella Beautiful because that’s exactly what she is—a beautiful soul. Being a parent of a child with a disability transformed me into who I am today. It’s a journey filled with fear, happiness, advocacy, and unexpected challenges. It’s far from glamorous or easy; in fact, it can be incredibly messy. It’s a complex path that has tested our family’s strength multiple times.
I often describe my life as taking three steps forward and two steps back. Whenever one door closes, another one closes too. My close friend refers to it as “megluck.” Just when we think we have this Down Syndrome thing figured out, “megluck” strikes.
Sleep has been a struggle for Bella. She wakes up every hour at night, and we’ve made countless attempts to fix it. The weakness on the right side of her body has become more noticeable as she learns to feed herself, walk, and run. We have weekly physical therapy, and recently we added aquatic therapy to help strengthen that side, which means driving to another town for the pool.
With seven therapy sessions a week already, this would make it eight, and it involves a lot of additional traveling. I work full-time with only one day off during the week. On that day, we do four therapies, and the rest is managed with the help of family. I am constantly exhausted and constantly stressed—a ticking time bomb, you could say. I worry about her present and her future.
Through it all, I’ve learned that Bella is far from ordinary. Yes, she has an extra chromosome, but that’s not what sets her apart. She doesn’t fit within the “Down Syndrome developmental guidelines.” She creates her own. She is strong despite her low muscle tone. She is bright despite her developmental and cognitive delays. She is gorgeous despite her “traits.” She has made our family stronger and our hearts bigger. She will continue to bring light into the darkness, hope into the fear, and comfort into the unknown. Bella Beautiful, I will never stop fighting for you!