In our family of four, there’s me (Jamie), my partner Alex, our spirited son Ethan (5), and our darling daughter Mia (4). Mia is full of life—she adores tucking in her dolls, bouncing on the trampoline, and dodging her brother when he’s pretending to be a dinosaur. At just nine weeks old, however, she received a diagnosis of Down syndrome (Trisomy 21), which marked the beginning of a new chapter for us.
Ethan is your typical five-year-old, obsessed with superheroes, Star Wars, and anything that roars. We consider ourselves a “normal” family, but what does that even mean? For us, normal includes weekend pajama parties that last until noon and epic sibling battles over who gets to wield the lightsaber.
Mia made her grand entrance into the world at home on the morning of April 13, 2012, after a swift and peaceful labor. Later that day, Ethan met his new baby sister. When we introduced them, he simply looked at her and declared, “Mimi,” a nickname that has stuck ever since.
Eight weeks passed in a whirlwind of baby snuggles until we noticed Mia’s feet had a significant gap between her big toe and the next. A quick visit to the doctor led to the unexpected diagnosis of Down syndrome. It was a shock, and the adjustment period was real.
Initially, we focused on family life—telling our closest friends and family while keeping the news close to our hearts. We made it a priority to establish a routine filled with love and support, and when we felt ready, we shared Mia’s diagnosis with others. We encouraged them to ask questions, assuring them we were open to discussing anything.
We feel incredibly fortunate to have supportive families who are eager to learn how they can help us through our day-to-day challenges. Their presence has been invaluable, especially during tough times.
As we navigated this new terrain, we learned how Mia, and indeed any child with Down syndrome, processes information. Health professionals and new friends introduced us to techniques that have helped Mia flourish. This knowledge has transformed our perspective as parents, empowering us to support her development to the fullest.
Of course, we face challenges. Some days feel like an uphill battle, but we consider ourselves lucky and blessed. Is there anything we wish we had known earlier? Well, for starters, the winning lottery numbers would be nice! While we can’t predict the future, we can prepare for it and create strategies to support our children as they grow—especially when we’re not around.
However, the best approach is to embrace the present. Enjoy each moment, relish in family life, and accept that challenges will arise. That’s just how life works.
If we could send a message back to ourselves at the beginning of this journey, it might read like this:
Dear Us,
Don’t stress too much. Everything is going to be alright. Your children are wonderfully unique and will make you laugh daily—even when they drive you up the wall. Try not to dwell on future worries. Plan ahead, but savor every moment. You’ll be just fine.
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In summary, parenting a child with Down syndrome comes with its own set of challenges and rewards. Embracing the journey, seeking support, and cherishing every moment are key to thriving as a family.