I have noticed a trend in parenting these days, which can be summed up in the phrase, “I want to give my child every advantage possible.” That sounds like the right thing to want. But sometimes it is wrong to just give a child an advantage. It is as if there is a foot-race, and I am fighting for my child to get a head-start over the other kids. That is not a fair race. But who cares? Since everyone gets a trophy anyway.
I do NOT want to give my child “every advantage possible.”
However it would be nice to minimize the disadvantages my child does have. I do want her to have a hearing aid, so she can hear just like everyone else. But I am not giving her super-sonic ears with spy technology, so she can eavesdrop on the neighbors 10 houses down. That’s just crazy.
It is about a boy named Auggie who has Treacher Collins Syndome. My husband and our daughter is a “Real Life Auggie.” The movie is raising awareness and encouraging people to “Choose Kind.”
I hope this movie does help remove some of the disadvantages for my daughter. However, there are still challenges in life which are unavoidable.
I think about the butterfly
When a caterpillar emerges from the cocoon as a butterfly, it is a struggle to get out of the cacoon. In that situation, any loving parent, should want to help their child. However, the process of struggle strengthens the butterfly’s wings so it can fly. If the butterfly receives help, and avoids that challenge, than the butterfly will never be able to fly.
So on one hand, I do not want my child to suffer. But even worse, I do not want to be the reason she can never fly. I do not what to cripple my daughter by “giving her an advantage.” And I do not want either of my daughters to become a fragile snowflake who falls apart at the smallest offense. #SuckItUpButtercup
7 years ago, I meet Duane Zingale and quickly fell in love. Everything about Duane is amazing. His leadership skills, experience living overseas, love for people, the fun way he interacts with children, and his love for outdoor adventures, hiking, biking, and rock climbing. He is confident, not cocky, but secure in his identity. Duane has a great sense of humor and makes me laugh. While he is funny, he also knows when to be serious. He treats me well – opening the door, or offering a hand when climbing over boulders on our hike. Duane is willing and eager to hear my input on decisions. He wants to, not only be a leader, but raise up others in leadership.
In my eyes, he is perfect in every way. But there is just one thing which made me hesitant to marry him – Treacher Collins Syndrome. Because of that, his face looks noticeably different. He is missing cheekbones, and has a small jaw hidden behind his giant beard. He has prosthetic ears and wears a hearing aid.
How would I feel going everywhere with him and having people stare at him, stare at us?
If I had a TCS, I would have longed to be invisible, hoping no one would notice me. Being made fun of would have crushed me. But not Duane, He rose above that, confident, being loud and funny, not caring what people thought.
Then I realized, everything I love about Duane, is shaped by what he went through in life. It is because of TCS, that Duane became the man who I fell in love with. I wouldn’t trade that for anything. So I married him.
Duane’s family did not have the TCS community on FaceBook. He never met another person who had TCS, until our 2nd daughter was born. As I saw my husband hold his baby girl for the first time, I looked at them in wonder, thinking, “wow, she looks just like Dada.” I am thankful she has a Dada who looks just like her, and is someone for her to look up to.
Since Duane turned out so well, I want to know how he was raised. That was 20+ years ago, so his parents did not all the free services that we have to today. For the most-part he was treated like a normal kid and so he grew up to be a normal adult. Actually I think he is above-average, probably because he doesn’t back down from a challenge.
I don’t want my child’s entire life to be defined by her disadvantages. I don’t want her be treated like a celebrity for having special needs. Because if being “handicap” makes her feel important, then that becomes her identity. If she is defined by her challenges, then she limited to that.
I think of Jono Lancaster, who also has TCS. The challenges he faced, made him stronger. Shortly after our daughter was born, Jono came to visit our family. He travels the world encouraging families that their child is not limited by their disabilities. Telling families like yours: your daughter can fly, and she will fly!
It might take a lot more time and effort for my little girl to strengthen her wings, so she can fly. But once she flies, nothing will be able stop our little Lioness.