‘I’m sorry your child has Down syndrome.’ Sorry is the last thing we feel. It’s impossible to imagine life without her.’: Teenager with Down syndrome becomes dancer, model, ‘She’s the best of us’

“I found out I was pregnant as I was waiting for test results before getting anesthesia for knee surgery. The nurse said, ‘Ah, we are going to have to postpone your surgery, you are pregnant.’ She then showed me two pregnancy tests. Oh, okay. Surprise, shock, wow!

Weeks later, test results indicated our child had a 4% chance of having Down syndrome. We needed to get an appointment with a perinatologist. Her comment: ‘You only have a few weeks left if you want to terminate the pregnancy.’ First, I had no idea I was being tested for birth defects. Secondly, the doctor’s first comment to me was about terminating? Nope, just nope.

We went to the specialist and were told our baby (who I could feel moving at 17 weeks) had a 2% chance of having Down syndrome. What do you do with that news? We spent the weekend grieving, and did not tell anyone what we were going through. We knew there was no decision to be made. This is our baby. We did switch doctors, though. This one was not going to work for us!

Jamie and I went through the pregnancy with excitement and joy and thought a 2% chance meant she was fine. But Sam did not cry when she was born. I heard no noise from her at all. I asked Jamie to go check on her. What torture it is to not know if something is wrong with your baby, and you cannot get up to look because you are still on the table during a c-section! Jamie said, ‘She is okay, she needs a little extra care.’

The nurse brought her to my face. She asked if anyone had told us our baby was at risk for Down syndrome. Sam had eight of the markers that are common. Tears streamed down my face. Moments went by and the anesthesiologist stroked my forehead and said, ‘This is a happy moment. You are going to love this baby!’  Truer words were never spoken, and I can’t thank him enough for saying that.

The pediatrician in the hospital told us she needed to get an ultrasound of her belly, an echocardiogram of her heart within 2 weeks of leaving the hospital, a vision evaluation because of a problem with her eye, and a hearing evaluation because she failed the hearing test three times. It took 3 months to get her to all these specialists. There was some good news though. She had minor heart defects and her belly seemed fine. She was blind in one eye, due to a malformation, and her hearing is slightly diminished.

There are emotional challenges to face as well, such as people who comment, ‘Your kid is ugly’ and others who are ‘sorry your child has Down syndrome’. Well, she was never ugly, not to us, and sorry is the last thing we feel. She has grown into a beautiful young lady. She is a model with Zebedee Management, happy, healthy, and looking forward to her future. This kid loves to dress up, her after-school-wear has at times consisted of a taffeta dress, pearls, and a tiara! True story. Sam is a graceful, beautiful young lady with a wonderful sense of style and her own way of expressing it. Samantha looks in the mirror and loves what she sees! She sees a confident, smart, kind, beautiful girl. Couldn’t we all use a little of that?

I had been a coach for Special Olympics but even with that experience, I had no idea what a baby with Down syndrome would need. It was hard work. Sam was losing weight quickly after she was born. She was too weak to eat. All of the sudden, we had to learn the early intervention system and how to be strong advocates for our underweight daughter. We started winning. Sam was approved for a feeding therapist and a physical therapist through our insurance. This made all the difference.

She was holding weight and, slowly but surely, getting stronger. She also started working with a therapist for visually impaired kids. These therapists taught her sign language and we learned along with her. They taught us how to play with her in ways that would also improve her strength. She eventually learned how to do the things typical kids learn. She was able to eat solid foods, turn over, walk, and with so much practice, ride a bike! She is blind in one eye (and has a prosthetic eye now), can see about 3 feet clearly with no glasses. Her courage amazes us. She is so determined to do all the things typical kids do and has shown us what perseverance looks like!

Even given all the challenges she faces, Sam is a natural athlete. She started with gymnastics and then the flood gates opened! She competed in a Special Olympics Triathlon (her dad jumped in the pool to swim alongside her since she couldn’t see) and crushed it! She will try just about any sport but is madly in love with basketball, cheerleading, track and field, soccer, and all forms of dance.

She has broken new ground-she was the first dancer with Down syndrome to perform in Ballet Arizona’s The Nutcracker, first as a small soldier and then as an angel.

Blind in one eye and not able to wear her glasses on stage, Sam had to memorize her choreography in relation to where the dancer was next to her. Watching our daughter go on stage at Phoenix Symphony Hall had to be one of the great moments of my life. What an accomplishment!

Samantha is now in her junior year of high school and is in a mix of special education and general education classes. She loves school and runs out to the bus every morning. What joy. It’s hard to not be in a good mood when she enters a room.

Our life with Samantha has been full of love, hard work, worry. Make no mistake, when you have a child with special needs, it sometimes feels like you are on a treadmill that is going slightly too fast to keep up with. The visits with specialists don’t go away, in fact, they often increase. Her younger sister, McKenzie, loves Sam more than anything, but she too feels the stress at times. This is our life, but it gets easier. And the rewards are great.

This girl is the essence of our hearts, the whole extended family is in love with her. She has made those around her better people and it’s impossible to imagine a life without her in it. She is the best of us, joyful, gentle, loving, totally without guile, and just brimming with courage. A pure soul and true wonder.”

‘Aren’t you going to tell me congratulations?’ She wanted me to cry, but she wasn’t going to break me.’: Mom becomes Down syndrome advocate, ‘This is HIS journey’

‘She’ll never be able to do it.’ Doctors didn’t expect much. The win wasn’t just for me. It was for an entire community.’: Woman with Down syndrome becomes ‘Woman of Worth’

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