When the pregnancy test showed “positive,” my mind surged with visions of what would come. I envisioned little shoes, school performances, prom evenings, and sincere talks before marriages. “Am I going to hold a small boy or girl?” “Will I understand how to be the mother they require?” I spent nine months contemplating the kind of life developing inside me, how it would appear, and who it would grow into. Hope, fear, and joy all come inside me at that moment. My pregnancy was ordinary, experiencing only slight pain, nausea, and exhaustion.
The doctor reported each ultrasound to be normal. I asked about a few things, like her neck, arms, legs, and the fluid. Each time I asked, the answer was always the same: everything was good. At 39 weeks, after facing headaches and dizziness, I was sent for a stress test and an ultrasound. Nothing felt quite right. I spoke it out loud to my husband while we waited. The nurse gently let me know I was being admitted. Fluid was found in her lungs and stomach. I was being rushed in for an emergency C-section. She burst in, shouting. Just for a moment, we were filled with joy. I heard someone gently say she shows characteristics consistent with Down syndrome. That was perfect; the joy instantly dissolved, and everything changed
That night, a lady entered our room and introduced herself as a genetics doctor. She walked in fast and did not waste any time. She said that she saw our daughter and confirmed that she truly showed signs of Down syndrome. She said she’d do the blood test so we could know for sure. She continued talking about Down Syndrome and the transformations that have taken place for individuals with Down Syndrome currently. She said they are loved and have become everyone’s favorite at the school.
My dreams shattered right before me. Sometimes, I felt like I was in a space with her scattered pieces. The room looked like it had been turned upside down.
For months after, I felt trapped in that mental space, always sinking, struggling to breathe, holding on with everything I had to stop the storm to make it rewind or never come. The sadness burned inside me like a fire I couldn’t put out. Three months passed in that place. Finally, I let go and accepted it. When I did, I saw who was there. Standing quietly with her big, marble-like eyes and blonde hair, my daughter told me she had always been there. I realized it wasn’t her who was lost
It was me,
That is where it all started for me. That is when I discovered myself or at least gradually began to reveal who I truly am—the hidden version of myself, the better version of myself, the stronger version of myself. I use the word lost because I was caught up in expectations and ideas of success that were not based on any true understanding of what success really means. I became overwhelmed with feelings of blame and worry. I felt I had failed. The blame was on me.
The mother takes a chair to feed her baby.
Over time, my view of the world began to change. A new way of seeing things gave me more freedom than I had ever felt before. It helped me see Felicity not as who I thought she should be but as she is. When I first noticed her struggling to crawl, I noticed her determination to keep going. I stopped seeing her with sadness, anger, or fear; instead, I felt respect, pride, and deep love. Sometimes, I catch myself slipping back into old ways of thinking, but now I notice it and hold myself back because those thoughts do not help me as a parent. They do not worry me anymore. Her achievements are hers alone. I am not concerned about her delays. I let go of that, and by doing so, I allowed both her and myself to grow.
Felicity was diagnosed at birth, and I remember wanting to try for another child right away to prove that my body could do it.
That it could have a typical child. After we came home from the hospital and things settled down, I was afraid to try again because I worried about having another child with a disability. I have always said that my struggles are more about my feelings than Flick’s. I put that thought aside for a while and poured all my love and attention into my daughter. Eventually, I went to therapy and came to terms with the minor problems that never fully went away. I was ready to grow our family. I felt excited and sure that Flick would be a wonderful big sister. Each month, I felt a bit uneasy. One year passed, and it was time to call the doctor. The sadness began to fade from the edges of my mind. My heart felt heavy.
My body was letting down my daughter, my husband, and mostly me. I felt embarrassed, but I know this is not something to be ashamed of. We should not feel shame, and we will keep trying.
Someone once told me you cannot expect life to be happy all the time with a child who has a disability. I agree that no one is happy all the time. That is what makes life real. My love for Felicity goes deeper than words, and while I am not always happy, I have learned to look for peace and meaning instead. Happiness does not last, but peace does last. Being a parent, especially to a child with a disability, is a journey that never ends. I still have moments like crying in a shoe store because nothing fits her orthotics or sitting through her first IEP meeting, my heart full of worry. These moments do not make me weak. They make me human. Through it all, I have learned that it is not about what I expected life to be but about finding beauty in what it is.
As memories of a friend’s first sleepover, prom graduation, and other essential moments come to mind, the room darkens, and the wind blows. That familiar sadness mixed with many different feelings, a storm ready to take over starts returning. This time, though, my eyes stay on her and do not waver. The storms of sadness grow quieter. I have come to see that many of my struggles are more about me than about her. When I take a moment to stop and think, I know the weight of the responsibilities I have taken and the pressure of the goals I have chased. And in that quiet moment, as I watch her play, laugh, dance, work, and grow, I feel a deep pride.
