Today is Ella’s 11th birthday. Hours after her birth, my friend (and her pediatrician) came to our room to deliver the diagnosis of Down syndrome.
In that moment, I had very little clue what Down syndrome truly looked like. I had been around a few kids with the condition. But I don’t remember having seen any adult with Ds.
At the time, the mental image I had of Down syndrome was loving, but sad. It was kind, but dreaded. It was understandable, but radically incomplete. Eleven years later I have a different image of Down syndrome. It’s an image that includes the struggle and challenges, but one which also understands the potential, humanity, and hope of every individual who is diagnosed with Down syndrome.
When I see Down syndrome, this is what I see:
1. Joy. When Ella was born, people didn’t know how to react. That’s understandable, we didn’t either. While there was confusion and sadness over the diagnosis, that didn’t take away the common joy which a new parents have. The joy hasn’t stopped. (See: What I Prayed the Night Ella Was Born)
2. Beauty. Ds causes different facial features. It’s easy to focus on the features which are not considered beautiful by society and forget the positive features. As a pastor who regularly visits newborns, I can always tell they don’t have Down syndrome because their noses look so big. Ella’s was small and beautiful.
3. Potential. The world is yet to see the ceiling of a person born with Down syndrome. While we have come a long way as a society in giving children and adults the services they need, we are still on the cutting edge of understanding how to empower those with Down syndrome to reach their full potential. I know there are limits, but the possibilities are greater than the limitations
4. Stubbornness. I keep reminding myself that in the long-run, this can be a great trait. In the short-term, it is challenging. Ella is stubborn, but that stubbornness also creates a sense of individuality, drive, and will. Our job is to make her stubborn about the right things–truth, doing right, justice, caring for others, etc.
5. Connection. While Ella has a difficult time expressing her concern for others, she desperately wants to connect with other people. She doesn’t care about toys or things, but she cares deeply about being included by others. (See: What Ella Wants, Your Child Needs)
6. Playfulness. Ella loves to laugh and make others laugh. She doesn’t always know how to do so, but when she finds a trick, she will repeat it. She loves to have fun with others, but she does so in a far less pretentious way than many. (See: Ella on Kicking a Teacher)
7. Toughness. Down syndrome is often seen as a weakness. After all, it causes low-muscle tone and can lead to people getting tired easily. But when I think of Ds, I think of toughness. Ella has an ability to face far more challenges than most people, but keep on going every day. It takes more effort and energy for her to complete most tasks, but she gives up far less often than many people I know.
8. Pride. While accomplishments might occur slower for Ella, she takes just as much pride in each achievement (and her parents take even more pride than normal). It’s easy to mistake people with Down syndrome as having low motivation or desire. It simply isn’t true. Like every person, Ella takes pride in what she does.
9. Challenges. There is no question that Down syndrome has special challenges. There are aspects of Ella’s life I’ll never be able to fully understand. I have to continually remind myself that many things are harder on her than they are on me. Yet the challenges aren’t necessarily all negative. Like any adversity in life, with them comes the opportunity to learn and grow.
10. Dreams. The life expectancy of those with Down syndrome is less than the rest of the population, but it is far greater than it use to be. Knowing Ella will likely live a longer life than those born a generation ago, places more emphasis on her dreams for the future. She often thinks of what life will be like ten or twenty years from now.
11. Love. It’s a misconception that people with Down syndrome are the most loving people ever. Maybe some are, but Ella is not. She doesn’t quickly and easily give love or affection to others. But she does love fiercely once a person proves themselves trustworthy.
This is what I see when I see Down syndrome. In the comments, wish Ella a Happy Birthday and tell her what she has taught you about Down syndrome.
For more, see:
A Story About Ella on her 10th Birthday
21 Responses to What Down Syndrome Looks Like to Me
Alton June 30, 2016
Happy birthday, Ella! I hope your special day was wonderful. Wishing you many more.
Heather July 1, 2016
Happy birthday gorgeous girl! xx <3 xx
With love from Heather
(All the way off in Australia)
Roy Zimmerman July 1, 2016
A happy birthday, Ella! You have shown my family and I that the sky is the limit. You are everything we would like for Sloan to be! Hope you have a great day!
Shannon Pigeon July 1, 2016
Happy Birthday Ella! You’re a beautiful little lady…and so photogenic!
I see the same potential your dad sees in number 3. Your parents didn’t allow misconceptions to limit you. I’m looking forward to watching you succeed and go far in life.
Baby Mama's Blog July 1, 2016
She’s beautiful!
Dave July 1, 2016
Happy Birthday Elia
Donna Wakefield Johnson July 1, 2016
Happy Birthday, Ella! I have met you once at your church, and I know your father and grandmother, Nan. I don’t see you in person often, but I see you on Facebook. I have seen you doing things like cooking and modeling clothes. You look so pretty and work very hard to be good at what you do. You have taught me that you like to do the same things that my daughters and granddaughters liked to do when they were your age. You have so many friends at school and church and on Facebook that are learning about how you and your family work and play and enjoy each other. Thank you and your family for teaching me so much about love and life. Even though I taught school for 30 years, you have taught me so many lessons about the things that you can learn and want to learn. Have a great Happy Birthday celebration! You are a star!!
Sheryl July 1, 2016
Happy Birthday Ella! You have taught me every person is an individual and special!
Greer Vest July 1, 2016
Give her a hug from her uncle in Dallas
Kerry July 1, 2016
Happy 11th Birthday Ella! Because of your dad’s willingness to share what your last 10 years have taught him, you – Ella – have taught me to never make assumptions of what the future holds in store for each of us. A big Thank you to you Ella.
Rita Wade July 1, 2016
Happy Birthday Ella. I feel so lucky to have gotten to know you through your dad’s blog! You’ve taught me that in life, you just keep going – – learning, loving and even if life is frustrating at times, you just keep going. What a blessing you are to so many people.
Aiza July 1, 2016
Ella is beautiful – that smile will melt any heart, she makes me smile just looking at them. Happy birthday beautiful soul. God bless.
Catherine July 1, 2016
Happy Birthday Ella! I wish you the best day celebrating this special day with your wonderful family! I love your smile Ella, you are such a beautiful young lady!
Angie Jennings July 1, 2016
Happy Birthday Ella! You are so very special and have helped change the world simply by being you! Your parents are wonderful people and I know they are wonderful to you too. It’s neat to know that you’ve taught them as much or more than they’ve taught you. Keep smiling that beautiful smile!
Monica Chapman July 1, 2016
Birthday Blessings, Ella! Thanks to your Dad for sharing your beautiful pictures with those of us who love his blog! 🙂
Sharon Foraker July 1, 2016
Happy birthday Ella. You can be proud of your accomplishments. Maybe you have to work a little harder than some others but keep going for the goal. Don’t quit because it may just be the very next try that will succeed. You are beautiful and the inner beauty is even more important than the outside. It shows through.
Mary Elizabeth Winter Nutter July 2, 2016
Ella is one of the most naturally beautiful children I’ve ever seen. Thank you for sharing her with us.
Sharon Smith July 2, 2016
That’s beautiful. Ella’s beautiful, and spunky, and everything a girl should be. Thank you for sharing your heart. Happy Birthday Ella!
Vicky Moss July 2, 2016
Happy birthday Miss Ella. You sound like quite an amazing young woman. Cherish those near you, embrace your future and take no prisoners.
Linda Polson July 2, 2016
Happy Birthday Ella! I loved your cooking show that you did with your mom! You are a great little cook!
Ann Befort McNellis July 2, 2016
Happy Birthday, Ella! I have loved reading about you and watching you on Facebook. When my niece was born a few years ago with DS I was able to quickly share what I knew about you and your great parents! And … Her name is Elise and her big sister is Ella!! Thanks for being a great example, Ella!