Our family consists of four members: a mom and a dad (Emma and Alex, from here on referred to as “we”), an older brother, Ben (5 years old), and a younger sister, Mia (4 years old).
Mia enjoys tucking her dolls in for a nap, attending school, jumping on the trampoline, and being chased around the yard. She was diagnosed with Down syndrome (Trisomy 21) when she was just nine weeks old. Ben, on the other hand, is passionate about superheroes, dinosaurs, and anything related to space, dreaming of one day being a superhero himself. We consider ourselves a typical family.
What does “normal” mean, anyway? For us, it sometimes means lounging in pajamas until lunchtime on a Sunday. It means two kids squabbling over a toy lightsaber, one dressed as a fairy and the other as a werewolf. We like to think of ourselves as a normal family, just with a few extras.
Mia was born at home in our bedroom after a wonderfully smooth and swift labor at 7:30 a.m. on April 13, 2012. Ben met her later that day after returning from daycare. When we introduced them, we said, “Ben, this is your new sister, Mia.” He looked at her, then at us, and declared, “Mimi,” a name that has stuck with family and friends ever since.
For the next few weeks, we focused on adjusting to life with a new baby. At Mia’s eight-week check-up, we asked our doctor to examine her feet due to a noticeable gap between her big toe and the one next to it. A week later, we received the diagnosis of Down syndrome, which marked the beginning of a new chapter in our journey.
The news was unexpected and required significant adjustment. Initially, we concentrated on nurturing our family unit. We informed close relatives and friends, but we weren’t worried about sharing the news more broadly at that time. Instead, we prioritized establishing a routine and showering our children with love, which helped us remain grounded. When we felt ready, we shared our news with others, emphasizing our openness to questions they might have.
We are fortunate to have supportive families who actively engage in our daily lives and seek to understand how they can help. It’s comforting to know we have a network to rely on during challenging times.
As we navigated this journey, we learned about how Mia—and individuals with Down syndrome in general—process information and learn. Health professionals and new friends introduced us to various techniques and resources that have allowed Mia to thrive and engage with the world.
This newfound knowledge has significantly impacted our confidence as parents. We now feel equipped to support Mia, understanding her unique learning and thinking styles. In doing so, we believe we are helping her achieve her fullest potential.
Of course, challenges abound, and some days feel like an uphill battle. But we consider ourselves fortunate and blessed. Are there things we wish we had known earlier? Perhaps the winning lottery numbers! While the future is uncertain, we can make plans to support our children as they grow and to ensure they are cared for when we’re no longer around.
Ultimately, the healthiest approach is to remain present, to cherish each moment together, and to accept the inevitable challenges that life will bring.
If we could write a letter from our current selves to the beginning of this journey, it might read something like this:
Dear Us,
Don’t fret too much. Everything is going to be okay. Your children are beautiful, remarkable, and sometimes downright infuriating—but they will make you laugh every day.
Try not to dwell on what hasn’t happened yet. Plan wisely, but savor each moment. You’ll be just fine.
This post originally appeared on Quora.
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Summary
This article reflects on the author’s experiences after their daughter was diagnosed with Down syndrome, highlighting the importance of family support, learning about a child’s unique needs, and cherishing everyday moments. The journey emphasizes the balance between planning for the future and living in the present.