What I'm Learning About Life As I Parent My Child With Dwarfism

“Do not go where the path may lead, go instead where there is no path and leave a trail.”— Ralph Waldo Emerson

Today our son, Luca, turns 1. Wow. What an amazing thing to be able to say. I still remember seeing him for the first time — naked, crying, so alive — and feeling deep inside a sense of awe and wonder. That is truly a feeling that stays with you forever.

I’ve espoused this quote from Emerson for much of my life. It’s the credo I aim to live my life by. And because of that, it’s serendipitous that Luca would enter this world a year ago born to leave his own trail.

Luca was diagnosed at birth with a genetic condition called achondroplasia, the most common form of dwarfism. I previously wrote about his birth, discovering his diagnosis, and the emotional roller coaster that ensued.

Becoming a father is a storyline of new experiences and lessons: that first time your son smiles at you, the first time he hugs you, the first laugh you share together, the first time he throws the ball back to you. Parenting, it seems, begins with the belief that you are going to teach your child so many things. But in the past year, I’ve discovered that Luca is teaching me so much more — about unconditional love, how to experience pure joy, and how God blesses you in the most unexpected ways.

On his 1st birthday, I’ve distilled three important life lessons that Luca has taught me:

1. By nature, life makes us all unique.

No two humans have the same makeup nor will have the same experiences. But for most of us, there are commonalities that we share in our stories — the first time you crawl, your first sports team, your first friend, your first day of school. As a first time parent, I’ve often pictured Luca sharing many of my own stories. And he may, but maybe in very different ways. For example, instead of competing on his high school soccer team, he may compete in the Paralympics. Luca’s condition has brought this to light earlier than we probably would have with a child of average height.

And I take that as a blessing. You should not follow how other people have lived. It’s wise to learn from others, take guidance, and try out segments of other’s paths. But ultimately, we were all created uniquely and the way we navigate life is what makes life so amazing. Luca should, and will, go his own way and his life will be interesting and distinct from others, from mine. And I am finding joy in embracing this.

2. Be comfortable with a different path.

It is so easy to fall into the desire for your child to do everything earlier, better, smarter, stronger than other children. Reading about developmental milestones, comparing against our friends’ children — or worse, the dreaded internet. This past year, I’ve felt emotions of jealousy, resentment, anxiety, and sensitivity to social media posts, watching local kids riding bikes, or being asked if my child has done “fill in the blank” yet. These are not fair or logical emotions, but they are real.

But then, I watch Luca army crawl across the floor in a graceful breaststroke motion and see the beauty in his different path. I am proud and grateful for his determination to find ways to use his body to do whatever he sets his mind to. Luca will have problem-solving abilities and creativity that most of us can’t begin to comprehend or compete with.

I am learning to deal with the sadness and jealousy by acknowledging my sensitivity to the way other children develop versus how Luca will develop. And then I’m letting it go because I have the honor and privilege of celebrating Luca’s milestones — as they come in their own unique, special, creative, joyful ways.

3. Live your life. Leave your trail.

Luca exudes joy. As a child, when he enjoys something, he laughs. He does something new, he smiles and explores. It’s just that simple. As we grow older, we let others cloud and filter our experiences. We forget to celebrate life and we let joyful moments pass us by. I hope and pray Luca can preserve the purity of just living life and finding joy in it. He is teaching me to embrace that.

Life is great when you write your own story. You leave your own trail. And the stories that are different are those that are truly special.

Happy birthday, Luca. Thank you for the gifts you have given me this past year. I hope I will be able to return the favor.

Thanks to my beautiful and supportive wife, Sarah, for help with this post. Luca and I are lucky to have you.