5 surprising things I’ve learned from having a child with Down syndrome

When I write about the “magic” of having a child with Down syndrome — or about how much being Kate’s mom has taught me — people often ask me what that means.

They assume that having a child with learning delays has taught me to be more flexible or patient. They assume that I’ve become more adaptable or have learned to be more optimistic. They gather that I have learned a lot about self-sacrifice and “living in the moment.”

And they would be right.

I have grown in all of those virtues — as anyone who has had children of all abilities would attest. But I’ve also learned many surprising life lessons that have changed who I am, who our family is, and even, how I view the world.

Here are 5 surprising things I’ve learned from having a child with Down syndrome:

1. People are drawn to the authentic.

When I am out and about with Kate, I often have the privilege of meeting someone who wants to share their story with me. And not just their experience with Down syndrome, but with motherhood, with childhood, with family, with challenges, with life. Kate’s bright eyes and contagious smile bring out an authenticity in people — a vulnerability even — and in my experience, bring out the best.

It’s hard to live in a shallow, appearance-focused world when looking into her eyes. And because of her, I have a hard time caring about some of the less-important things I used to. Don’t get me wrong: this isn’t because I am humbled in the face of a suffering child. Quite the opposite. I am taken by her radiant joy — and the joy she evokes in others. A joy that has little to do with the fleeting frivolities of life, but that comes from a deeper place of real love.

2. Most of our fears are just shadows.

I was watching Dinosaur Train with my son not long ago — an episode where the children dinosaurs go on a camping trip with their parents. The kids were a bit scared as first-time campers can be — it was dark, and there were strange noises and spooky shadows lurking outside their tent’s sheer walls. Suddenly, a large shadow appeared outside. Like a hand puppet in a flashlight beam, it grew and grew until it almost took up the whole tent. The kids were terrified — what kind of large, scary creature was lurking outside?

Then, it came into the light. And the shadow dissipated. And what they thought was a scary creature ended up being a harmless, gentle frog. One of the children said, “See — it’s not a big deal at all, we were just looking at the shadow.” The lesson was profound.

It’s so easy to get caught up on the partial-view, the dark parts, the scary scenes through a sheer tent wall. When in reality, most things — including a Down syndrome diagnosis — when brought into the full light, are much more manageable.

3. The most important indicator for success is a family’s love.

When it comes to having a child, it always feels like there’s so much more we could be doing. More enrichment activities, more crafts, more sports, more opportunities for them to grow, more experiences to develop their little brains so they can be the most successful. And when it comes to having a child with special needs, those pressures are even stronger. More therapies, more early intervention, more and more and more.

But what I’ve realized is that the best indicator of children’s success is simply: our family’s love.

Being together. Playing together. Accepting each other for who we are and pushing each other to be our best. Though there are many incredible resources and therapies for all of our children — and though I feel blessed by the wonderful experts who have been in Kate’s life — the true magic sauce is not found in good curriculum, but in good company. And that starts in our home.

4. Every child is a unique individual.

It’s easy to group people into buckets that remove their individualism. Extroverts vs. introverts, appeasing vs. strong willed, typically developing vs. developmentally delayed and so on. But Kate having Down syndrome has helped me to celebrate the unique qualities in all of my children — and people in general.

Her diagnosis is only an aspect of what makes her her — just like how my first-born is a natural comedian and my 1-year-old is a dare-devil. There is such beauty in learning to celebrate every individual for whatever they bring to the table (and the family). And as their mother, I love the gift of being able to help them become exactly who they’re supposed to be: the best them they can be.

5. Every family has a unique path.

Many of the decisions we make are made simply because it’s what we’re supposed to do. Or what everyone does. And it often takes a nudge (or an unexpected life event) to force us to stop, analyze and make intentional decisions on what’s best for our families. Having Kate has encouraged us to think differently about everything in life. We were pushed out of our comfort zone — and because our family would already be doing things a little “differently,” our whole life perspective opened up. What else could we be doing differently that we never considered before?

In the years following Kate’s birth, we’ve spent energy on organizing priorities and living with purpose. We moved closer to family. We bought acreage. We’re researching homeschooling. Kate’s birth unveiled a different path we never knew existed — and now we rejoice in taking the road less traveled.

I can’t believe that God put us on this earth to be ordinary.” – Lou Holtz

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9 Comments

  1. The statement about fears being shadows is brilliant. So much of the information about Down Syndrome – and parenting a child with Down Syndrome – is fear-based. Its nice to see others pushing past the shadows. :)

    Peace,
    LBD

  2. Anna

    Beautiful. We are learning the same thing and walking a similar yet different path. If we happen to see each other along the way I will make sure to pull you aside to give you a heartfelt hug.

  3. Kimberley

    What a great post! Thank you. My daughter, born last Sept, is also named Kate, and has that one extra copy of the 21st chromosome. I am loving reading your blog. Your approach to life. And normalcy. and family. and food. Thank you. Your 5 points really hit home with me. Just. So. True.

    Thank you! -Kimberley

  4. Delores Townsend

    Love your posts. This is also true of an “ordinary”family. My daughter touches so many people, and affects their perceptions of people with different abilities. Her interactions with others are uplifting.

  5. This is amazing! My husband and I were so inspired after our daughter Ruby’s birth that we started a non-profit that grants scholarships to adults with Down syndrome for college. It has been amazing learning about each families journey and seeing just how capable individuals with Ds are! We are blessed everyday with Ruby’s beautiful smiles, hugs and a zest for life that is so infectious you can’t deny it! I am going to share this on our facebook page. You should check out our website and our “Rockin’ Recipients”…it will for sure put a smile on your face :)

    Have a great day!!
    Liz
    http://www.rubysrainbow.org

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