by Andrea Ott-Dahl
It was 8:30 on a Monday morning when my partner Keston and I got a call that would forever change our lives. The doctor got straight to the point. “The baby has Trisomy 21,” he said. He was talking about the baby I was carrying as a surrogate.
“Positive for Down syndrome?” I asked.
It was out now, but I wasn’t surprised. Just days earlier the doctor had told us he suspected something. And we had opted for genetic testing.
Then the doctor added, “And it’s a girl,” and shortly thereafter hung up.
I took this especially hard because we had gone through so much to make this baby, and she was my biological child. I felt guilty and responsible, even though logically I recognized I had, had no control. I gave a heartbroken sob, but I knew I didn’t have time. The intended parents were waiting, just as we had been a few minutes earlier. I picked up the phone to call them.
The four of us wondered what would this mean? We agreed that a meeting with the genetic counselor surely would be able to answer that question. So I quickly scheduled a meeting for the next day.
Anxious for answers, we intently listened to the genetic counselor. She began with explanations on chromosomes and followed up with a slew of medical complications the baby “would likely suffer from if she didn’t pass away on her own.” She had no answers about medical advancements, no real-life scenarios, no support networks or resources for us. The intended parents felt hopeless.
Keston and I understood, but we felt there were still too many questions that went unanswered. If we could not get the answers to our questions from the genetic counselor, we would branch out on our own and find some. We spent hours online researching. We contacted and visited our local Down syndrome organization.
Things weren’t as bad as we had been led to believe. We saw hope!
As we found the answers we needed, we urged the intended parents to search as well, but they chose to walk away.
But Keston and I believed in the baby girl who had already beaten some incredible odds. We decided if she was meant to pass away as the doctors predicted, she would on her own, but we wouldn’t take her chance at life away. Instead, we would become her protectors and advocates. We would be her Moms.
And she not only survived, but thrived!
We chose to be proactive. We researched and enrolled our daughter in early intervention therapies, which started at 2 months of age. And now three years later, against doctor expectations, we have an adorable and feisty toddler named Delaney Skye, who is developmentally ahead or on target.
When I look back on our meeting with the genetic counselor, I wish she would have told us what I am about to tell you:
It’s going to be OK. There are things you can do to help your child thrive. You can do this. Sure, there will be moments when life is consumed with doctor and therapy appointments, and yes, your child may need to work hard for everyday tasks.
But with your commitment, your child will also grow and flourish and defy expectations. Your child will fill you with more pride and love than you ever imagined. Your life and the lives of those around you will be so much richer with a child like Delaney.
Because if I knew all the things that I know now, I would have never shed a single tear because Delaney is perfect just as she is!
A year and a half ago we petitioned Disney Studios to include characters with disabilities in their animated films. It received almost 100,000 signatures from all over the world and Disney executives were kind enough to receive it.
A big misconception is that we (The Ott-Dahl's) are against Disney. Quite the opposite is the truth.
I grew up in Anaheim, only a few blocks away from what would be my favorite place on Earth for the rest of my life, Disneyland. Being so close to the mouse, my upbringing, like all children growing up in Anaheim in the 70’s, was immersed in Disney; Even the educational films at school were produced by Disney, usually with Walt narrating some wildlife feature and in the summers we’d always bump into teachers taking up a summer job at the park. We as Anaheim children really felt as if we had an "Uncle Walt."
As an adult, I wanted my children to feel the same magic and kinship with Disney like I did growing up and thankfully, they do. Whenever their films come out we saw them on opening day and already had them pre-ordered on DVD and as often as I can, I take my family to visit the parks where I become a kid again.
I cannot imagine how dull my life would have been without Disney and its legacy.
I also unknowingly grew up being a bigot, but not like you might think. I only had a few experiences with people with intellectual disabilities. And what experiences I did have frightened my young mind. I am ashamed for how I use to feel, but today am grateful for my daughter Delaney who has Down syndrome taught me I could be a better person.
I was not alone. Ableism exists.
When Disney’s “Frozen” came out on DVD my two girls, Jules (8) and Delaney (2), watched, danced and sang to all the songs almost every day! Jules often pretended that they were Anna and Elsa. On one of those days Jules stopped dancing and sat in silence. She told us she was sad because she and Delaney could never be like Elsa and Anna. "Delaney could never be a princess Mommy-o" she told me. As quickly as I dismissed her concern, it dawned on me, she was right. How wise of her.
She made me think,“ Who could fix this? My hero's at Disney, that's who!”
Knowing the immeasurable influence Disney has over children, Andrea and I felt that had there been and if there were in the future, animated films by this giant influencer which featured characters with disabilities like Delaney's, typical children will grow up without fear (like I had) and discrimination in their developing hearts and minds.
Andrea, Jules and I hoped that we were encouraging Disney to take an amazing step, to set a precedent and become a voice for so many kids who face bullying and discrimination. We believed in Disney then and we believe in Disney now.
We are not going to be biased against Disney Studios if they never come through and feature a character more like Delaney. We understand, but do we still hold out hope? Yes.
Fall is a favorite time of year at our house. Come October 1st our garage suddenly becomes much less cluttered as the boxes, bins and bags of Fall and Halloween decorations come out.
Orange, brown and yellow leafed garlands with orange LED lights are hung, our life sized “Charlie” the skeleton takes his seat at the dining room table, ghouls are hung in the corners, huge black spiders and lighted pumpkins are staged all around the house and we begin our seasonal weekend traditions of decorating, caramel apple making, pumpkin carving and every Saturday we watch Halloween movies.
This year we added the tradition of teaching the kids how to make pumpkin pies!
Along with standard safety rules; when crossing a street walk side by side with an adult, no eating candy unless Moms have checked it, etc. One big deal with Andrea and I is that we expect our kids to be polite and thankful trick-or-treaters which comes with three rules.
Number one: The first house that we cannot hear you say “Thank You” is the last house you go to. This was tough lesson Jared and Jules learned on their first Halloween with me 5 years ago, but we haven’t had any repeats since then!
Number two: If the homeowner offers up a bowl for the kids to pick through, the kids are not allowed to grab handfuls. The kids are only allowed to pick one candy unless the homeowner offers more.
Number three: No running across lawns! We expect our kids to use the walkways, but with so many other kids are trampling over and across beautifully coiffed lawns, they do not think it is fair that they get cut in front of by other overzealous trick-or-treaters.
Andrea and I hope that having traditions and just plain common sense etiquette will help our kids to grow up to be more thoughtful and family oriented people.
In planning Delaney's therapies, her playgroups and her supplements all of which help to keep her right on schedule cognitively with typical babies Andrea and I were thrown a curve ball which we hadn't planned on.
As Delaney began to walk we were amazed by her agility. Proudly watching her walking back and forth across the living room just like any other 14 month old and then we were still overwhelmed with pride as she then began running... that is until she realized how to open the front door and ran right out of it without looking back!
Shocked and horrified (we live on a somewhat busy street) Andrea and I hoped this was a fluke. But it wasn't. Any chance Delaney gets to break free she does. This is something that we were completely unprepared for. Delaney is a runner.
Going outside just to get in the car became a big chore. Holding the hand of this precocious toddler who wants nothing more than to squeeze her hand out of ours and dart off as fast and as far as she can. We've tried scaring her by hiding behind her, but she does not look back. She is more concerned with her exploration of the land or starting a conversation with whatever stranger she sees than where her moms are. Anywhere we go we have to put up barricades and often we are no match for her problem solving skills as she figures a way out of it and bolts as fast as she can.
Researching we discovered that this is somewhat common with kids who have Down syndrome. Luckily we ran across this great blog by a mom named Liz (http://ourversionofnormal.blogspot.com/2012/04/for-parents-of-runners-sprinters.html) which provides some great tips which Andrea and I will be applying to our new challenge!
An Incredible Turn of Events
You know, sometimes things just happen which make it hard to believe it's just a coincidence. Of course Delaney coming into my life when I was a discriminating ableist was one of those things and I am so grateful that a higher power believed in me and gave me the amazing gift of Delaney.
And something recently happened to Andrea and I, which yet again, leads me to believe the Universe or whatever higher power you may believe in has some sort of master plan for all of us.
When Andrea and I found out Peanut (aka Delaney in her earliest of stages – in the womb) had Down syndrome and the intended parents backed out, Andrea and I were not even remotely prepared in any way to have another baby.
Our families pressed for termination and abandoned us. We were truly alone in our journey, but soon realized we had a Guardian Angel. An older woman who was a member of the Swiss Club we belonged to had heard our story and began bringing anything and everything we needed, dropping them off on our doorstep. It was like Christmas for months! We would come home from running errands to find a high chair or a baby swing, bag after bag of clothing, toys, baby carriers and even diapers. These were all like-new hand me downs from her granddaughters which she could have easily sold for hundreds of dollars.
We were shocked at how this one person (when we had no one being supportive of us) had adopted our little family. Andrea and I often looked at each other scratching our heads and were left wondering, why was she so nice to us and how could we ever repay her?
The woman had no expectations, only a smile on her face and a wave of her hand as if it were nothing when we ran into her.
A month ago at a Swiss function she told us her daughter was pregnant again. We were thrilled for her and told her we would be returning the baby stuff.
“Well we haven’t found out if the baby is a boy or girl,” she told us, not caring too much about getting the baby items back.
A month went by when Andrea’s cell phone rang. It was the woman.
Oh, we need to get together the baby things, I thought when Andrea told me it was the woman on the phone. I listened in on the conversation.
The woman had “news.” Her daughter had gone in for an ultrasound and the baby was in fact a girl. Then woman said “and…” she took a long pause, “they believe the baby has Down syndrome. Can you help my daughter?”
Josee Hope is 21 months old and is from Queensland, Australia.
Josee Hope was diagnosed with Trisomy 21 (Down syndrome) at 13 weeks gestation. She had a high nuchal fold at her 12 week ultrasound which gave her a 1:2 chance of having Trisomy 21. We were advised to have a CVS but were told Josee would most likely miscarriage 24-48 hours after the procedure. We had the CVS and then waited for a miscarriage but prayed for a miracle. At her 18 week ultrasound a miracle began to unfold. As each week passed and each ultrasound was completed Josee grew stronger and bigger and healthier. The miracle was complete when Josee Hope was born healthy and beautiful on January 10th.
She loves to ride her bike, play with her big brother and sister, swim, sing and dance. Josee's mom says, "Josee is a blessing not a burden!"
Follow her journey on Josee's Facebook page!
Ella just turned 6 months old. She is such a ham and loves to smile and make people laugh. She had open heart surgery two weeks ago and you couldn't tell by looking at her. She is strong and a fighter. She loves her wubby and loves to play. She hates laying down now, she wants to move and play and explore even though she can't crawl yet. She is such a happy little girl.
Follow Ella on Ella's Facebook page!
Ashley is 24 years old and attends a day program that teaches her life skills, such as cooking, computer skills, and shopping. She also gets to do fun activities like go bowling, go to the movies, get her nails painted or another fun community event.
Ashley lives at home with her mom, older sister, younger brother and niece and nephew. She helps out with many chores around the house, folding clothes, putting dishes away, take the trash to garbage can, making her bed, etc.
Although she may have a few differences, Ashley also shares just as many common hopes and dreams as anyone of us. She loves TV, movies, listening to mudic and likes to watch YouTube. She loves to draw and write a lot of letters of the alphabet. She currently loves Hello Kitty things. Ashley loves Disneyland and has grown up watching Disney movies and loves to sing along. Her family takes her to Disneyland for much needed exercise.
While in the early infant program, she was taught American Sign Laungage, most of the words she no longer uses, but a few still pop up once in a while. "Ashley can say a small about of words clearly however most of the things she says we have to listen really hard and sometimes we have no idea what she is trying to communicate." says her mom.
Ashley had heart surgery when she was 6 months old and has Hep.C from a blood transfusion. At 17, she had her gall bladder removed (gall stones) and her ovaries removed that same year due to cysts and the possibility that her mom says, "I was told she may have cancer, which was false, these two things are non related to DS."
She is loving and kind most 90% of the time, likes routine, and is stubborn about 10% of the time. She participated in basketball in the Special Olympic from age 10-20. She is shy at first most times and will have to warm up to a person.
"I am inspired by her kindness, smiles and unconditional love for her family and friends everyday." says her mom.
Please join in her journey and watch her star shine bright on Ashley's Facebook page!
This is Sean. Sean is 23 years old. He'll be 24 in December. He loves to play basketball with his brothers. He loves music and of course his video games.
"I was 20 when my son was born. I didn't know he had Downs until I delivered him. I prayed and prayed, please let this be a dream. I know now that it was all meant to be. My son is my world, he's the most loving person and he completes our family. He has made me the person I am today. I am blessed to have such an amazing son." says his mom.
Andrea & Keston
Authors, bloggers, activists, and Moms to 3 kiddos including Delaney Skye.