Guest article from John Shukie, father of Special Olympics Colorado Young Athlete Nadia
You’re pregnant with your third child, and with a 11-month old and 3-year in old in tow, you barely have had time to think about what has transpired over the past few days. It started with an abnormal ultrasound. Unknown to you, that ultrasound initiated a chain of events that will change your lives forever. You later find out that your soon to be daughter (your 3rd girl!) has a congenital heart defect, and because this defect is commonly associated with Down Syndrome, you have genetic testing completed.
The call arrives from the doctor…the tests came back positive…your daughter, if she survives her heart condition in utero…has Down Syndrome.
What does that even mean? We all kind of know what Down Syndrome is, but so many questions flood the mind.
- Will she talk?
- Understand the world around her?
- How will her sisters respond? Our family?
- Will I be a good enough parent for her?
- What will school be like?
- Will children be kind to her?
- Will she live a segregated life?
- What can I do to help her?
Even more questions surround the heart surgery she will need in the first 6 months of her life.
- How do you bury a stillborn?
- Will I get to see her if they need to rush her off to emergency heart surgery?
- Will I love her as much as my other children?
What I remember most is the greatest uncertainty I have ever felt. We read through books and books about what to expect, and the most common answer was
“Every child is different – there are no guarantees about any child…with or without Down Syndrome.”
That’s not what I wanted to hear, but it was the truth.
I often wish I could go back in time and tell my worried self how things are now. How this child, Nadia, lights up a room, how she is a shining star in her school, how she has taught everyone around her lessons in strength and love. How she is integrated into every aspect of her social, academic and athletic life, how even if someone tried to leave her out, she wouldn’t let it happen. I want to tell my past self that Nadia is a beautiful gift, and that all that worrying about “what ifs” is unnecessary.
We love her to pieces. Like every kid, she has friends, teams, birthday parties, bad days at school, good days playing with her sisters.
Nadia has found a home at school, a home on the soccer field, swimming pool and gymnastics mat.
I want to tell my past self that “every child is different – there are no guarantees about any child…with or without Down Syndrome” and to enjoy every minute of it.