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Challenge: Kids with Special Needs

I'm allowed to NOT like my child's diagnosis

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My daughter is 6 and has Down syndrome. She also has a huge host of medical conditions that come along with having Down syndrome. She was one of the unlucky children that is considered medically fragile in our community. Most children with Down syndrome aren't like her, but many are.

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I love my daughter with every ounce of my being. But that does not mean that I have to love Down syndrome...her medical condition. I'm a bit of a black sheep within sectors of our own special needs community. I've been told that I must resent my child because I don't love ALL of her. That if I do not love the fact that she has Down syndrome that I must think she is broken or "less than". No, those words have never left my mouth but people love to assume things. If my child has a cold, I don't love the cold. If my child were to be diagnosed with cancer, you wouldn't see me celebrating the fact that my child has cancer. "YAY cancer! Isn't it exciting that she got it!" No, no it wouldn't be great or exciting. It would be devastating. It's a medical condition. Down syndrome is a medical condition. Her DNA is altered. Because of her DNA she has had to suffer through surgeries and illnesses that most typical children normally wouldn't. These are medical issues specifically common to individuals with Down syndrome. And yes I understand that ANYONE can have a medical issue...typical or nontypical. But even if I had a "typical" child with a medical condition, I still wouldn't love the medical condition. I would never WISH someone's child to have Down syndrome.


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I'm not saying that I would change my daughter's appearance or that I don't love her personality because I do. I adore her upturned eyes, her button nose and so many of her features that do come directly from Down syndrome. However I do not love the fact that she gets her nutrition from a feeding tube. I do not love the fact that she has heart disease. I do not love the fact that she has had to have open heart surgery and is preparing for another open heart surgery which will not be her last...because she needs several. I do not love the fact that my child is legally blind, has sensory processing disorder, stims, has dislocating joints that pop out every single day and has left her in a wheelchair for months on end because of a dislocation that cannot be fixed until she quits growing many years from now. I do not love the fact that my daughter has to work 100 times harder than other children for something as simple as learning to roll over, walking, talking, use a spoon which at the age of 6 she is still working on. I don't love the fact that the public school here wanted to put my child in a closet to feed her. I do not love the fact that no day cares would take her because she has a feeding tube. I do not love the fact that she is statistically more likely to be sexually assaulted. There are so many reasons why I do not love Down syndrome and what comes along with Down syndrome. And THAT. IS. OK. Not everyone is puppy dogs and rainbows about their child's medical condition. It doesn't mean there is something wrong with the way they view things. I am a realist. I do not sugar coat things and I make no apologies for the way I feel.

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So there it is. I love my child. I love my child more than my own life. But I do not love Down syndrome. I love her for who she is. She is vivacious, loving, empathetic, curious, artistic and funny as can be. And she has medical issues including Down syndrome. Her medical issues do not make her who she is. She is Violet. She is amazing, with or without Down syndrome.

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