Stacie Kropodra and her son, Ryker
I am not sure exactly how I discovered Stacie Kropodra on Facebook a year ago, I only remember reading her posts and thinking, ‘Wow! What an amazing woman!’
Until recently, I was under the impression she lived in Kamloops, BC. She does not. However, her message is important and something that should be shared with everyone, therefore this ‘Kamloops’ blog is stretching to include her story.
Stacie lives with her husband and two boys just west of Sylvan Lake, Alberta, where they spend time on their acreage enjoying the outdoors.
In most ways, her family is like any other. And in a way, they are a bit different from most: they have a son with Down Syndrome (DS).
She agreed to an interview.
‘I’m all about spreading proper information and educating people whenever and wherever.‘ – Stacie
I asked her tell us about her son.
“Ryker is our oldest son and he is four years old. What makes Ryker different is just a little something extra. He has 3 copies (instead of 2) of the 21st chromosome, which is Trisomy 21 (aka Down Syndrome).
Ryker is just like any other four-year-old boy. He loves animals, camping, throwing balls, swimming, riding on the quad, and wrestling with his little brother. Kids that have Down Syndrome want to play and have fun like everyone else. It may just take them a bit longer to catch on or they may need a little extra help.”
‘It is so important to end the stigma about DS‘. – Stacie
Here she talks about Ryker’s birth.
“At my 20 week ultrasound the doctor found some spots on his heart. My doctor wasn’t concerned, but she sent me to a specialist in Calgary just to be safe.
The specialist explained that spots on the heart were markers for DS. But Ryker had no other markers and the spots that were seen the week prior were smaller and there were fewer of them. The specialist said it would be a one in a million chance my baby had DS.
At 37 weeks, Ryker decided to come a little early. Right away the doctors explained he was having issues keeping his oxygen saturation levels up and then said he had signs of having DS. The doctors took him to the NICU, where he stayed for a week.
During that week, there was a bit of a debate amongst the nurses as to whether or not he had DS. (Ryker doesn’t have all the physical markers for DS. No palmer crease, no gap between the big and next toe. But he does have the low muscle tone, upward almond eyes, and a smaller nose bridge).
I finally asked how one obtains a definitive diagnosis for DS. It required a blood test. Two weeks later it was confirmed Ryker had Trisomy 21.”
‘Sometimes I just go about my daily life always advocating for Ryker and others with DS’. – Stacie
I wanted to know what community supports are available to her and her family.
“There are many parent link supports for all parents. There is FSCD which can help with extra expenses, but they can be difficult to navigate. There are early intervention people galore, from a lady who told me what was available, to occupational and physical therapists.
When we were discharged from the hospital I received a lot of pamphlets, but didn’t really find them useful. I’m not sure what more Red Deer could use as far as support. There are many support groups on FB and inspirational pages where parents share the ups and downs of raising an extra needs child.”
‘Thank you for caring and wanting to advocate. It warms this momma’s heart!‘ – Stacie
I asked her for advice for other parents in similar situations as well as for the general public.
“If you feel your child is not getting the best education or therapy or doctors, then speak up and fight to get new supports. This life is like you had planned a trip to Italy, but ended up in Holland. It’s still beautiful, but less fast paced. It takes time to adjust and grieve the life you thought was coming. It’s still an amazing trip and experience.
What could I share with the general public? Well, we could be here a while…lol.
First of all, if someone has a baby with DS, don’t say ‘I’m sorry’, CONGRATULATIONS would be the proper response. Inclusion is best. Teach your kids to go up to a child that may be needing help. They are just like their peers and pick up on people talking about them or being scared of them.
The word ‘retard’ is not a word to use. There are many words in the English language you can use. The medical community hasn’t used this horrible term in many years.
People language first: Ryker is a little boy who happens to have DS, he is NOT a ‘downs kid’. Down Syndrome does NOT define our children. Do not group all people with DS together. Just like everyone else, they all have their unique talents and abilities. Beautiful caring and loving souls is what they have in common.
People with DS are like four-leaf clovers. Most people have 3 leaves, but every once in a while there is one with one extra leaf. We don’t know why it happens, it just does!
Also, World Down Syndrome Day is March 21 (3rd month and day 21, get it? ) . On this day we encourage everyone to wear funky or mismatched socks (rock your socks), and to wear blue and yellow! This can strike up a conversation and you can tell them all about this little boy you heard about and how awesome he is!”
‘If the typical person could view the world through the eyes of a person with DS, I think this world would have a lot more love!‘ – Stacie
Stacie Kropodra and her son, Ryker