My Daughter With Down Syndrome Is A Gift, Not A Burden

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“We were both ‘band-geeks.’ I met my husband Jeff in 7th grade in the band room. I played saxophone and he played Tuba. He marched right behind me during marching band season, had a great view of any outfit I wore, and as I will later find out, had a huge crush on me. To this day, he can still tell me his favorite outfits I wore. After we graduated from high school, Jeff went off to be a Naval Officer. He flew F-14 Tomcats (for those in our generation- think Top Gun) and I finished college to became a pharmaceutical rep. 

We never dated in high school, but he called me during one Christmas break and asked if I wanted to have dinner. So, I said I’d go, thinking this was only as ‘friends.’ We went to a seafood restaurant where he got a bad piece of seafood and ended up really impressing me; he threw up the entire way home. I had to drive his car and we had to keep stopping for him to throw up by the side of the road. Our relationship was really like a When Harry met Sally movie, until we finally said, ‘I do ‘ in Sept of 1993.

Two years later, I was pregnant, and at 16 weeks I got a call from my OBGYN. Her first words to me were ‘Linda, I have some news for you—can you please sit down.’ My alpha-fetoprotein test came back high, and I had a 1 in 16 chance that our baby had Down syndrome. My world was rocked and to say I was terrified was an understatement. I was 31 at the time and not considered high risk for genetic complications—how could this be? When I was in high school, I volunteered at a summer camp for kids with disabilities, so I knew what Down syndrome was about. Without the obvious support of my OB, we decided not to do an amniocentesis because the results would not have changed our pregnancy. Uncertainty lurked in my mind for the rest of the pregnancy. But God has a way of giving you hints if you are open to them. 

I will never forget this. I was nearing the 8th month and we attended a church service where a portion of the pastor’s message was showing a clip of Forrest Gump. The clip was when Forrest got his brace stuck in the grate while some men sat on a bench watching Sally Fields try to pull it out. And she said, ‘What’s the matter, haven’t you ever seen a little boy with braces before?’ and then, ‘Forrest don’t ever let anyone tell you they’re better than you!’ I had this visceral response and just broke down sobbing. I had to leave the service because I could not control the sobbing.  I sobbed for a good 20 minutes before I could collect myself. At that very moment, I knew our baby had Down syndrome. And unbeknownst to me at the time, I became a Sally Field mother. A loving and protective mother—one that would fight conventional wisdom and teach her daughter that different was not less.

The day she was born, there was no glimmer of hope. Our world came crashing down. The delivery room was hush-hush. Stone-cold quiet even. The atmosphere was dark. There was whispering in the corner by the medical staff. Then they said that from her low muscle tone at birth and other markers, they thought she had Down syndrome. The only person to congratulate us in the delivery room was a nurse named Holly. During my pregnancy, there was pressure and disgust everywhere because I was not aborting this child. 

Hours later, before my husband and I had a chance to hold her, the genetics counselor came in and told us she’d probably never learn to read or write, tie her own shoes, would be overweight, have thin hair, dry skin, and would be a burden on our family. He also told us if we couldn’t handle this, we could adopt her out or institutionalize her. Right then is when a fire got lit.

We named her Grace, and when she was born, I looked into her eyes and thought she was the most beautiful thing in the whole world.

We decided to do everything we could to help her achieve her potential. We looked outside the box and started working on all aspects of her development, and as we had no idea how it would all turn out, we all worked hard every single day and prayed for God’s light to shine through her. We were going against conventional wisdom and we knew she would be faced with many challenges. We didn’t look at her like a ‘syndrome,’ or like an accumulation of things wrong with her. 

We wanted to see how she could develop in every aspect of her life from diet and nutrition, physical fitness, academics, gross motor, fine motor, language, and social skills. You name it, we were working with her. We wanted her to have the fullest and most complete life as she possibly could. We set the bar high for her, put blinders on, worked every day with her, and didn’t listen to the nay-sayers. But that was hard because most people just thought we were in denial and I wasn’t a very liked mother. 

Grace started reading sight words at age 3, and by age 5, she tested at a 2nd grade level. We knew we had to keep her ahead of the game so when struggles and challenges came, we had an additional cushion. I think the hardest part of going through her educational years was the incredibly low expectations the world put on her. I once had a speech therapist in 2nd grade tell me right in front of her like she couldn’t hear what we were saying that Grace would most likely never have a job and not work full time. She didn’t think part-time work was in her future either. Who can determine that when you are 8 years old? And why would you say that in front of that child? It was an uphill battle every single day, but I was not going to give up and buy into the limits everyone was putting on her. Needless to say, we homeschooled A LOT.

Okay, fast forward 20 years. In 2017, Grace was working in a private school with me as her job coach when a group of students called her over, wanting her to open their milk cartons. So, I went over and said, ‘Hey guys, can I help you too? And they said, ‘No, we want her to help us…because we know she can’t do it.’

Grace was mortified, her face dropped, she went white, and just broke down crying. When we got home, she sobbed uncontrollably for hours. I had never seen her like this. There had been times growing up when classmates made mean remarks or strangers stared at her, but Grace always shook it off. But this was her job where she was supposed to be in charge. She tried to help these children. Their laughter cut into the core of her self esteem. For the first time ever, she seemed defeated.

I knew I was going to have to do something to deal with this. What we came up with would change Grace’s life. We hatched a plan. The plan became The Grace Effect, an inclusivity mission with an interactive presentation for schools to promote disability awareness. We wanted to make a difference and wanted to share with students what it’s like to have struggles and yet overcome them.

When we were researching to make The Grace Effect, we came across another model with DS and Grace asked me if she could be a model herself. I said, ‘I don’t see why not. Let’s do this Grace!’ We hired our photographer, Trenna Travis, who took some lifestyle shots and posted them to Facebook. Within 2 weeks, she had over 200,000 shares and her pictures were all over the world. We knew we had something.

Courtesy of Linda Strobel

Today Grace is an inspirational 24-year-old model and speaker with Down syndrome. She has been featured in Forbes, on The Today Show, and is now the first American with Down syndrome to represent a skincare line. She has been interviewed on TV and radio, has been featured in 15 magazines, and walked the runway for Runway of Dreams New York Fashion Week and Atlantic City Fashion Week. In 2017, after a severe bullying attack, Grace turned pain into purpose and co-created The Grace Effect, a presentation she gives to schools about overcoming obstacles, treating people with kindness and respect, and living with a disability.

Courtesy of Linda Strobel

She has spoken to well over 3,000 students and is raising awareness and shifting attitudes and perceptions about what is possible for someone with a disability. Grace continues to break barriers and stereotypes in her profession. In 2018, she embarked upon a modeling career after her photos went viral. She is signed to represent the Obagi skincare line as well as the clothing line Alivia, and is represented by Gamut Management, Moxie Artists, and NaturallyFitAgencyLA.

Courtesy of Linda Strobel
Courtesy of Linda Strobel

When I think of all the light, hope, inspiration, and change she is bringing to the world, I shudder to think her life by society’s standards was deemed unworthy, unwanted, and a burden. Sometimes all someone needs is someone to believe in them, give them a hand up, or change the methodology in teaching them how to get it. I’ve learned you can teach anybody anything if you’re willing to love them through their disability and love them through their struggle. As Grace says in the conclusion of her speech, ‘Everyone wants to be valued, everyone wants to be included, every life has value, and YES! Kindness does matter. Shine your light bright, Grace.”

Courtesy of Linda Strobel
Courtesy of Linda Strobel
Courtesy of Linda Strobel

This story was submitted to Love What Matters by Linda and Grace Strobel of Chesterfield, Missouri. You can follow their journey on Facebook, Instagram, and Twitter. Submit your own story here. 

Read more stories like this:

‘But it doesn’t run in our family!’ I’m too young for this. Is it really happening twice?’: Brother with Down syndrome helps parents accept son’s diagnosis, ‘We had so much hope because of him’

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