ONCE UPON A GENE - EPISODE 016 - The Lucky Few
I'm super excited to be talking with a super rad dad, Jordan Steele. He married his highschool sweetheart and is the father to five year old twins and an almost one year old son who has down syndrome. He's genuine, fun and a lover of life. Jordan is also an emmy winning meteorologist and host on KING 5 Seattle.
EPISODE HIGHLIGHTS
Tell us about your son Kinlin, who has down syndrome.
Kinlin is 11 months. We had a great pregnancy, he was healthy and we didn't do genetic testing since everything was going well. When he was born, everything was still great and it was about 6-8 hours after he was born that the nurses came and checked him for down syndrome. You have all these things playing in your mind, but after processing through, crying, praying, talking to friends and family, we had a aha moment where we realized we had been given a gift. That next morning, we were filled with complete joy, we had friends and family come and they gave us nothing but positive embrace and from there everything was great. You still have the scariness of doctors telling you things, the what-if, thoughts of what could happen. Your mind starts to ramble again and you get caught in a tornado of negative feelings. You have to change your mindset and perspective. Things have really been so great. He's healthy and happy. He had a heart palpitation, so we still have a heart doctor. He was on oxygen for a couple months trying to get his lung strength and his lungs are good now.
Do you think knowing Kinlin's diagnosis would have helped to better prepare?
No, if we were to know, I think we would have freaked out more, done more research and it would have taken a lot longer to come to the conclusion of pure joy. I think if we were to know, there would have been a lot of time before he came of stress and worry, which could have affected him. Ultimately, it causes internal conflict that you don't need. For some people it's helpful, but for us I don't know that it would have been.
How would you say that having a son like Kinlin has enhanced your family or changed the way you parent your other kids?
We have a lot more grace and patience.Having twins, you struggle with patience and getting that patience took some time. Having Kinlin gave me perspective on how precious life is and how you need to be calf and enjoy as much as you can right now. Life is a gift, health is a gift, every little thing is a gift. Sometimes I look at my kids with their crazy attitudes when they talk back and I think about how I can parent them in that moment and just have love and grace. My life has been about finding the joy in every moment, even in a bad situation.
How do you talk to your twins about disability?
The first experience we had was when some neighbors told them that Kinlin would look weird or different. They came home and we'd talk about it, talk about what would be different about him. Their biggest thing is "why". We're into a period now where we express that we have been blessed with a child with disabilities, which in return, will make us all appreciative of who we are. It's been milestones and I'm not sure how they will look at the world differently, but I'm hoping it's going to make their journey much more special. Slowly but surely, we're teaching them.
What are the biggest misconceptions that you had or that you feel other people have about down syndrome?
There's a whole spectrum within the down syndrome community. That spectrum can be a wide array of how severe it is and how somewhat minor it is. We're learning that society will limit you and that you don't need anyone's approval to go beyond that line. We're talking about down syndrome more and it's becoming more normal.
What would you tell parents who have just received a diagnosis?
Feel every emotion because they're there for a reason and you don't want to mute them. You're going to feel extremely sad and scared and you want to acknowledge, embrace and feel that, but don't let that feeling take over your life. You have to come to a place of peace and calm. Try to get to the end goal that life is not over. This is just the beginning of something beautiful. It's different, but it's a good different.
LINKS AND RESOURCES MENTIONED
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