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Why I Share My Journey Raising Two Kids With Down Syndrome

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Having three kids is hard.

When two of them have disabilities, it can be harder.

My life is full of rainbows and windmills and milestones, and I will celebrate them from the rooftops.

But sometimes, parenting gets the best of me.

Sometimes I’m exhausted and snippy and at the end of my rope. Sometimes my 40-hour a week job takes too much and I feel guilty I can’t spend more time with my family. Sometimes I get frustrated with my super lovable kids and think, “I don’t know if I could survive as a stay-at-home mom.” Sometimes every road feels like it leads to a failure.

Sometimes I feel like the logistics of having three children is harder than actually raising said children. Sometimes figuring out who is going to drive what car is a morning puzzle, because we only have one vehicle that fits all three littles.

When we are relying on five different people to fill up a full week of at-home childcare because keeping a baby with Down syndrome out of daycare for the first year can really help their vulnerable immune systems, and when one piece of that puzzle gets lost, the whole thing seems to fall apart.

Sometimes we face behavior issues with our 6-year-old with Down syndrome, and our typical son acts like a raging three-nager.

I’ve to call the insurance company several times for our NICU bill for our 5-month-old with Down syndrome.

And I can’t even have a cocktail because I’m on the Whole 30, trying to lose the third baby weight (who thought that was a good idea).

That is me today. I am defeated, I am tired, and I am not in the mood to celebrate.

And then, I see notifications start popping up on my Facebook app. You see, earlier this morning I posted a video of my oldest, Lila, practicing a silly song we made up to help her introduce herself to new friends when she starts school next week. Like many kids with Down syndrome, she has a speech delay and that could mean it will take other kids a little longer to get to know her.

All of a sudden, videos started popping up from friends. Their kids wanted to say hi to Lila, too! Some of these people I have never even met in person, like a friend of a friend whose photography I liked so I sent her a friend request a few years ago, or a high school friend I haven’t seen in years, or a friend from Lila’s class last year who missed playing with her over the summer.

And I realize, this is why I share our story. People from all across the country feel like they know my girl (and now her little brother) because our lives are an open book. And if that means that those sweet friends who wanted to make Lila a video become the kids who include the classmates who may also have a disability, then it all makes sense. My girl will have made a difference to those kids.

From our front-porch swing with her little piggy-tails, she is changing the conversation. And that, my friends, is worth celebrating.

Even on the hardest days.

A version of this story originally appeared on Letters to Lila.

Originally published: August 9, 2018
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