Tell us a little bit about you and your family…
My name is Erin. I am writing about my brother, Matthew, who has Down syndrome. He is 20 years old and lives in Palatine, IL. Matt loves watching movies (current favorite is “Instant Family”) and listening to music. He likes to record himself making videos on his iPad, and secretly hopes to see himself on the big screen someday. Matt is a great powerlifter for the Special Olympics. He also loves being an uncle to my son.
What’s the one word you would pick to describe Matthew?
Magic.
What do you want the world to know about Down syndrome? What has Matthew taught you?
Down syndrome is the best gift I’ve ever been given. To grow up learning from and loving my brother has given me greater perspective, patience, and compassion. Down syndrome was never scary or unwanted for me. I was 5 years old when my brother was born, so he was never a diagnosis or a change of route: he was only ever my brother and best friend. He is at the very beginning of my life’s memories and has been writing his story, along with my own, for 20 years.
I want the world to know that Down syndrome is a gift to be treasured. It is not an easy walk to love and raise up an extra special kiddo, whether parent or sibling, but it is the walk that has brought the most unexplainable joy and understanding into a searching soul. Forgiveness, love, and the call to be yourself are best exemplified through the lives of those I love with Down syndrome.
If you see someone with Down syndrome in your community, introduce yourself, smile and say hi (especially adults, who aren’t seen as “cute” anymore). They are people with feelings, desires, and dreams. But don’t stop there, be a friend – one who includes and celebrates. It may just be the best thing you ever do.
Oh also, be aware of your word choice. And if you aren’t sure if something is hurtful, just ask!
What would you tell a parent who just received a diagnosis of Down syndrome for their child?
You hit the jackpot. Really truly. I can’t imagine a life without my brother; a life without Down syndrome at the front and center. And I am so glad you no longer have to walk this life without experiencing the same gift.
What else should people know about Down syndrome?
Down syndrome has changed my life innumerably.
1. I have a best friend.
2. I have grown with my brother for 20 years – learning with him, helping him, experiencing all that life throws with him, and because of that, I feel comfortable interacting with people who have different needs and abilities. It’s been my whole life for my whole life, and I love being able to extend friendship and understanding to individuals with special needs that may not otherwise receive it.
3. I have entered the field of Special Education to serve students who learn differently and hope to make a difference in the lives of students through my own experiences and learned knowledge.
4. I am adopting (at least) one child with Down syndrome.
5. I see the world differently. I see how difficult some kids and adults have to work just to get through their days. I see that life should be lived moment by moment – without holding grudges, without fear, and with love etched into every word and action that we let echo in this world.
In every facet of my life, I have been changed. This is all thanks to the gift of Down syndrome in my brother’s life.
How can people find you?
Holy cow!! I’m not crying, you’re crying. ERIN! Thank you so much for these words. As a mama of three, I can only pray that my two older children learn from and love Hudson the way you so beautifully advocate for and adore Matthew! We are blessed to have read your words and perspective. Thank you for sharing!
