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My Daughter With Down Syndrome Makes Me Wonder if I'm the One Missing Something

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My daughter, who is now 4, is the light of any room she enters. She is a vibrant, and at times mischievous, red head. In other words, pretty much a typical 4-year-old. She has Down syndrome. She does not “suffer” from Down syndrome or is defined by it. It is just one part of who she is. Just a facet of her make up, same as her red hair, blue/green eyes and freckles that pop out in the summer.

I read a lot of stories about how cruel and unfair this world can be toward people with Down syndrome, and I’ve no doubt many have experienced that. However, I must say that from my experience so far, we have been surrounded by nothing but family, friends, doctors, therapist, teachers, and people who treat her like the extraordinary person she is.

I remember well the day she was born and the pediatrician who was on call came in the room, stood at the end of the bed and said she suspected Down syndrome and a possible heart defect, then walked out. Now at first glance, I would say she could have handled that much better and display a better bedside manner. I think most parents would agree. However, I choose to believe that perhaps that was her way of saying that this was not something to be feared, it was part of who my daughter is. We felt enormously blessed that a pediatric heart doctor was on call that day and he took a look at my daughter’s heart. He was the perfect answer to our fears. He simply came in the room, sat down beside my wife, and delivered the news. Yet he reminded us our daughter was a blessing and our job was to love her and protect her. His job was to repair her heart and he would. He sat and listened to our questions and never once did he act is if she was nothing short of perfect.

Since that moment, we have been surrounded by a team of professionals who work tirelessly to help her with developmental delays, but they still treat her as any typical child. I pray we continue to always have such a support system. Now, I say all this to remind myself of all the great that surrounds us as we gear up for her annual IEP, because that part I do hate. I understand it, but it is still gut wrenching trying to define your child to a few pieces of paper.

So for the most part, I would say our experiences have shown us a world that sees her as the blessing and kid she is. I see the joy she gets in greeting a friend, or how it breaks her heart to see someone sad or hurting and all she wants is to offer comfort. Each morning she wakes with a smile of reckless abandon. The simple act of holding hands is enough to brighten the day. She says thank you at the smallest of acts. Sure, some physical things will come slower, but loving, trusting, forgiving and smiling seem to come far more quickly to her than me. As a Christian, I wonder if perhaps she is closer to being “Christ-like” than I will ever be on this earth. I often think maybe I am the one who is missing something, and not that my child has an extra chromosome.

Originally published: April 4, 2018
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