When I was expecting, I didn’t let the thought of my daughter Mia possibly having Down syndrome frighten me—at least, I wouldn’t openly confess that it did. What truly worried me was the possibility of her having a heart condition, which still lingers in my mind. I followed all the medical advice, taking it one day at a time, as we had no certainty about her diagnosis or health. We were left in the dark about whether Mia had Down syndrome or if her heart was healthy; the uncertainty was daunting. I began to do some research but intentionally limited my findings, holding onto the belief that Mia would be born “just fine,” whatever that meant.
And she was born just fine. Tiny and beautiful, she quickly became the center of our universe.
However, the initial hours after Mia’s birth were fraught with fear. She had to be rushed to the NICU as her oxygen levels plummeted, and the doctors were baffled about the cause. They couldn’t administer oxygen immediately, fearing it might be linked to a heart problem, so they called in the cardiologist we weren’t scheduled to see for several days.
We anxiously waited by Mia’s side until he arrived to perform an echocardiogram. To our relief, while there were minor concerns, her breathing issues were not related to her heart, and she could finally receive oxygen. “Finally!” I thought, feeling a mix of relief and anxiety as I stood there, doing my best to stay strong and composed, even though I wanted to cry.
The oxygen was just a temporary measure. Mia thrived with it but struggled without it. It turned out her tongue was the issue. Babies with Down syndrome, as the doctor explained, often have larger tongues—a fact I had overlooked during my research. Essentially, her tongue was obstructing her airway, making positioning critical. For three long days, she fluctuated between being on and off oxygen until, at last, she stabilized enough for us to take her home.
I sometimes feel sadness knowing her upbringing may differ from her sister Lily’s, or that she might struggle to make friends or face bullying.
Our first few days at home were challenging. My partner and I were exhausted, and although I had a relatively easy recovery, I was still in some pain. We were anxious, having been sent home without a monitor (if only I had known to ask for one!) and with instructions to closely observe her positioning to maintain her oxygen levels.
So we did just that—day and night, we remained vigilant about how Mia was positioned, hardly sleeping, fearful that she might stop breathing. While all new parents experience this worry, our fear was amplified by the very real potential for something dire to happen.
Just three days after we returned home, we experienced a terrifying moment. Mia was sitting with her older sister Lily when I noticed her turning blue as I lifted her from Lily’s arms. Her color was fading, and her tongue was stuck to the roof of her mouth. No change in position seemed to help, and she wasn’t making a sound. We rushed her to the hospital, but fortunately, we managed to free her tongue on the way and returned home after consulting with her pediatrician.
At times, I’m overwhelmed with a mix of emotions about Mia and her future. There are moments of fear, sadness, and excitement. I worry she may struggle to meet developmental milestones, or that her childhood might not be as carefree as her sister’s, or that she may face difficulties in friendships or teasing. I also fear she might experience serious health issues down the road; the list of concerns feels endless. People often advise me to take things one day at a time, and I do my best to heed that advice. However, no parent wants to witness their child suffer, and we would go to great lengths to shield them from pain.
As a mother, my desires are just like any other’s. I want the best for Mia, a life filled with joy and opportunities. My partner and I will give our all to ensure she thrives because our love for her is immense. It’s important for me to remember that feeling scared or anxious is perfectly normal; it’s okay to express those feelings. So, while the path ahead with Mia remains uncertain, I will cherish every moment—whether joyful, challenging, or frightening—and share my amazing daughter with the world.
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Summary:
In this heartfelt reflection, Emma Reynolds shares her journey as a mother to Mia, a daughter with Down syndrome. She recounts the fears and challenges faced during pregnancy and after Mia’s birth, including health concerns that led her to the NICU. Despite the uncertainties, Emma expresses profound gratitude for her daughter’s life while grappling with worries about Mia’s future, milestones, and potential health issues. Ultimately, she emphasizes the importance of embracing each moment with love and resilience.
Keyphrase:
Grateful for My Daughter with Down Syndrome
Tags:
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