The Mistake We Made When Planning for the Future of My Sister With Down Syndrome


We had the best intentions. We strived to create a great future for my younger sister, Sarah, who has Down syndrome, no matter what future events would transpire. For weeks, we spent many hours of emotional conversations. We thoroughly hashed out the precise details of our plan. We thought through every pitfall we could imagine, evaluated every potential problem, and developed strategies to overcome such obstacles so that Sarah could live a purposeful, impactful life.

But we forgot one essential part of the planning process and our conversations: we didn’t include Sarah, the person we were preparing for!

Sarah smiling with flowers

This mistake wasn’t immediately apparent to us. In fact, it wasn’t until a few years after we finalized all of our planning decisions, that we realized our mistake.

One Sunday afternoon after church, my family got together for a casual lunch at my parents’ house. Per usual, our conversations were scattered, all over the place. Sports, vacation plans, work schedules, events in the news. While my wife, sisters, and mom stood around the kitchen island, Dad and I sat at the kitchen table and talked about the state of the American economy and how it was affecting his retirement accounts.Out of what felt like nowhere to us, my sister Sarah brought both conversations to an abrupt pause, as she quietly interjected: “I have a question. When mom and dad die, what’s going to happen to me?”

Sarah with her mom and dad

Wow. That certainly wasn’t the question any of us expected to pop out of her mouth that sunny, Sunday afternoon. After a brief moment of surprise, my mom rushed over to Sarah, wrapped her arms around her, and said, “Sweetie, if something were to happen to us, you will have many options. If you want to live with Phillip and Chelsea, you can do that. If you want to live with Grace, that will be fine, too. But just know that, no matter what happens, you will be loved and cared for. We have a plan to make sure you are OK.”

Grace Sarah Phil and Chelsea in front of fountain

Sarah took a moment to process that information. And then, with a sense of relief, but also with tears welling up in her eyes, she said, “Good… because it’s been heavy on my heart for a long time.”

We thought we had planned for everything, but we didn’t let the person at the center of our planning process know what we had planned or let her have a voice in the planning. We forgot to provide Sarah with a sense of security, knowing that no matter what happens in the future, she will be loved and cared for.

As the only sibling still living at home with mom and dad, how many nights had she lay awake in bed wondering what would happen to her if something happened to them? One of the most important parts of the planning process is to create peace of mind from knowing that the future is well planned for.

We failed to provide my sister with that sense of security.

Learn from our mistakes!

Have you talked with your loved one about their future? Do they have peace of mind knowing that their life is well planned for? Do they have any questions or worries about their future? If you haven’t yet explicitly discussed planning decisions about their future with them, my guess is that they do. All it takes is a conversation to ease their heart and allow their mind to rest.

Phil Sarah Grace and Chelsea by the water at sunset

Plan now!

If your family hasn’t begun to plan for the future and you’re unsure what would happen to your son or daughter if something happened to you, we’d love to help you! Our team will meet you where you are and help you get to a place where you feel confident and secure, knowing that your loved one is well prepared to live an abundant, impactful life — the great life you’ve always imagined for him or her.

Image Credits: Phillip Clark

Find this story helpful? Share it with someone you care about.


Related to Down Syndrome

Prince William pinning the MBE medal on Sarah Gordy's dress.

Actress With Down Syndrome Sarah Gordy Awarded an MBE by Prince William

Actress Sarah Gordy was awarded an MBE by Prince William, Duke of Cambridge, making her the first woman with Down syndrome to receive the title, according to the BBC. Gordy was honored Wednesday for her service to the arts and people with disabilities. An MBE provides membership to the Order of the British Empire and is [...]
Little girl with Down syndrome playing alone in a playground.

Girl With Down Syndrome Wandered Away From School and It Happens More Than You May Realize

On Monday, a 7-year-old girl with Down syndrome wandered away from her Chicago school. She walked into Anton Montgomery’s home, who took her to the elementary school close to his home, suspecting it was where she eloped from. Upon their arrival, the school staff seemed to be thankful for her return, yet, according to an [...]
Family photo, mom, dad, and two daughters. The girls sit on their parent's laps.

How My Daughter With Down Syndrome Helped Me Overcome Social Anxiety

Growing up, I wouldn’t talk to the clerk at our local grocery store. Instead, I looked down at my feet and counted the seconds until my mom said it was time to go. As a teenager, I was the kid in the back of the class, scribbling in my notebook, hoping the teacher would not [...]
Brother and sister hugging each other. Sister is looking down at her brother while he smiles, resting his head on her shoulder.

To the Siblings of Kids With Down Syndrome

I was 6 years old when my mom brought home my little brother, Samuel. As I write this, I am sitting with him in our basement watching HGTV. He is now approaching 16 years old. I can assure you, he fits the characteristics of a “normal teenager.” Everybody loves him, he participates in sports (special [...]