“We were a family of three for seven years when we learned we were pregnant.
We had tried for a second child, which included fertility drugs, laparoscopic surgery, and failed rounds of IUIs. That’s when we agreed to stop. We had a beautiful and healthy daughter who wanted a sibling, but it was too much.
The summer of 2016, I had sudden back spasms that made me nauseous. Something told me to take a pregnancy test. And there it was… my beautiful big-fat-positive! I called my husband immediately. We were elated!
The weeks went by, and my anxiety got heavier and heavier. It took a lot to get us here; what if we lost this baby? I had a sick feeling in my gut every day, and it wasn’t the morning sickness.
The OB appointments started up, and the ultrasounds were all normal. At the 12-week appointment, we were told the facial bones were perfect, which ‘drastically decreases your chances of Down Syndrome!’ That was comforting to hear, but it didn’t make me feel 100%.
I had a social media post ready to share after this appointment, but I was afraid. I messaged my cousin, and she was the courage I needed. ‘Things are fine, the baby is healthy, now post it!’ With a click, it was shared. The comments came pouring in.
I got out of bed to get ready for the day and started bleeding heavily. I screamed for my husband; we called my mom and sister, and I fell to the floor in fear and cramping pain. Here it was, the cause for that sick feeling. I knew something was wrong. We were told it was a subchorionic hemorrhage, when there’s blood trapped between the uterus and gestational membranes. My whole family flooded my hospital room as the ultrasound showed a strong little heartbeat.
The rest of the pregnancy was pretty eventful, to say the least. It’s a girl! Normal anatomy scan at 20 weeks, but a constant tongue popping in and out caught my eye and kept me awake at night. I didn’t get the genetic blood work because I was too young and not at risk for Down Syndrome. I’m a pediatric nurse, and I drove the doctors I worked for insane, asking what they thought. I Googled it every chance I got. I called my mom every day, begging for her to tell me I was crazy. They all said, ‘Yes, Meg… the baby is healthy, stop worrying.’
I didn’t gain much weight at all. My belly was on the small side, and the baby started slowing down in growth. Twice a week, stress tests and ultrasounds were ordered, and each week that went by, she got closer and closer to failing. Toward the end of 36 weeks, the ultrasound showed low amniotic fluid. We were told, ‘Happy Birthday Baby!’ I was being induced that night; she needed to come out.
I was so nervous. Not for the pain of labor or having a newborn again, but for seeing her in person. I just knew something was wrong. I was having contractions all night, and the next day, I was ready to push. Two small pushes, and Bella Danielle was here at 4 lbs 3 oz.
The doctor threw her on my chest immediately, and I saw it. Down Syndrome. I felt sick. The nurses picked her up to get her cleaned and measured, all while whispering to each other. My husband was on the phone in the background, letting family know she had arrived, the doctor was congratulating me, and all I could hear was that damn whispering.
I grabbed a nurse’s arm as she walked by. ‘What’s wrong, is she okay?’ Stumbling over her words, she responded with, ‘Congratulations, she’s beautiful!’ Coward. She handed her to me before quickly walking out of the room, like she was some kind of damaged goods.
Our family came in so happy. They were passing her around, and I couldn’t even hear them talking. Only their lips were moving. I couldn’t breathe, and I couldn’t see straight. Why weren’t they asking me what was wrong with her? Why weren’t they sad? Why didn’t they see what I saw?
We were taken to our room, and we were told the pediatrician would be in to examine the baby. I don’t remember this with my oldest, but whatever. I stared at her face and that big tongue that could barely fit in her mouth. I asked my husband at least ten times, ‘Doesn’t she look like she has Down Syndrome?’ He told me to stop being ridiculous.
Then the pediatrician came in. My heart sank into my stomach, and I began to tremble. I will never forget her words. ‘Your baby is beautiful and perfect… Now, on the exam, I did notice some traits common with Down Syndrome. She is healthy and beautiful. We’ll need to do testing to be sure.’
I couldn’t cry. My husband asked me repeatedly, ‘What does this mean?’ He broke down. I stared out the window, wondering how I got here. I didn’t want to hold her, feed her, or look at her. I was furious with God. I am a good person, and 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 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, like 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 was numb, and I 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 of her ‘new diagnosis.’ I sat in the waiting room wearing my new mom diaper, 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 told us the types and probability of them closing on their own. We left but had to follow up again in six months. Add it to the list.
We got 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. It was as real as ever now. I realized then that I had to pull it together, not for me, but for my husband and the girls. He’s been the rock of this family, but I needed to step it up because he was grieving.
Strangers started coming to my house weekly — physical therapy, speech therapy, and occupational therapy. We did everything they told us to do and more. We were determined to see her hit those milestones on time or at least close to it. We pushed her. We were getting used to this new life, and I became 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 took her to my dermatology appointment, and she slept in her car seat the whole time. The doctor walked in, looked at her, and said, ‘Wow, she has Down Syndrome, huh? You’re a good person for keeping her.’ I choked on my tears and told her that I was the lucky one, not Bella. She cried, I left, and we never saw each other again.
I went into ‘advocate like a mother’ mode. I wanted to shout her worth every day. We call her Bella Beautiful, and that’s just what she is, a beautiful soul. Being a parent of a child with a disability became who I was. It’s filled with fear, happiness, advocacy, and unexpected storms. It isn’t glamorous or easy. It’s actually very messy. It’s complicated, and it almost tore us apart as a family, multiple times.
Three steps forward and two steps back is how I like to explain my life. When one door closes, another one closes too. One of my best friends calls it ‘megluck.’ Every time we got this Down Syndrome thing down, ‘megluck’ would strike.
She struggles with sleep; she wakes every hour at night, and we’ve had countless tries at fixing it. The right side of her body is weaker than the left, and it became increasingly noticeable as she started feeding herself, walking, and running. Physical therapy is once a week, and we now have aquatic therapy. The therapists recommended adding it to help strengthen that side.
She had seven therapy sessions a week already; this would make eight and includes driving to another town for the pool. I work full-time with one day off during the week. We do four therapies on that day, and then family helps with the rest. I’m exhausted all the time, and I’m a ball of stress, a ticking time bomb if you will. I worry about her in the present and the future.
I’ve learned that Bella is anything but ordinary. Sure, she has an extra chromosome, but that’s not what I’m talking about. She doesn’t fit in the ‘Down Syndrome developmental guidelines.’ She creates her own. She is strong despite her low muscle tone. She’s bright despite her developmental and cognitive delays. She’s gorgeous despite her ‘traits.’ She’s made our family stronger and our hearts bigger. She will continue to provide light in the dark, hope in the fear, and comfort in the unknown. Bella Beautiful, I will never stop fighting for you!”
