Updated: May 17, 2017
Originally Published: Aug. 11, 2016
Our family consists of four members: a mom and dad (Sarah and Alex, referred to as “we”), an older brother named Ben (5 years old), and a younger sister, Mia (4 years old). Mia cherishes playing with her dolls, attending school, bouncing on the trampoline, and engaging in playful chases. She was diagnosed with Down syndrome (Trisomy 21) when she was just 9 weeks old.
Ben, with his passion for superheroes, dinosaurs, and Star Wars, dreams of saving the world one day. We consider ourselves a typical family — or perhaps a “normal-plus” family, with our own unique quirks.
Mia’s birth was a planned home delivery, taking place in our bedroom on the morning of April 13, 2012, after a swift and serene labor. Ben met her later that day after returning from daycare. We introduced her saying, “Ben, this is your baby sister, Mia.” He simply exclaimed, “Mimi,” and that name has stuck ever since.
For the next eight weeks, we focused on adjusting to life with a newborn. It was during Mia’s eight-week checkup that we asked our doctor to examine her feet, noting a noticeable gap between her big toe and the next one. A week later, we received the diagnosis of Down syndrome, marking the beginning of a new chapter in our lives.
The news was overwhelming and required a significant adjustment. Initially, we concentrated on family life, sharing the news with close family and friends while prioritizing our daily routine and nurturing our children. This focus helped us remain grounded. Eventually, we reached out to others, inviting questions and discussions about Mia.
We are fortunate to have supportive families who are eager to understand our day-to-day needs and how they can assist us. Knowing that help is available during challenging times has been invaluable.
As we navigated this journey, we learned about how Mia, like others with Down syndrome, learns and processes information differently. Health professionals and new friends introduced us to various techniques and resources that enable Mia to thrive and engage with the world around her. This has positively impacted our confidence as parents, as we now feel equipped to support her growth and development.
Despite the challenges we face, we often feel incredibly fortunate and blessed. Are there things we wish we’d known? Perhaps the winning lottery numbers, but the future remains uncertain. What we can do is plan for our family’s needs and establish support systems for when we’re no longer around.
The healthiest approach for us, we’ve discovered, is to live in the present. Enjoying our time together as a family, embracing the inevitable challenges that life presents, is what truly matters.
If we were to write a letter to ourselves at the beginning of this journey, it might read something like this:
Dear Us,
Don’t stress too much. You’ll be alright. Your children are wonderful, extraordinary, and sometimes exasperating, but they will bring laughter into your lives every single day.
Try not to fret over what hasn’t happened yet. Plan wisely, but savor each day.
You’ve got this.
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Summary
This piece reflects on the journey of parenting a child with Down syndrome, emphasizing the importance of support, learning, and living in the moment. The author shares personal experiences, insights gained throughout the process, and a reassuring message to new parents facing similar challenges.