A thoughtful response

Today, I overheard a woman discussing the age of a mother of young children. She commented on how the mother seemed to be old for a mom of young children. “But at least her kids seemed healthy” she said. She went on to discuss with her friend about how it can be so scary trying to have children at an older age because you might end up with a child with Down syndrome or other health issues. What she might not have said out loud or intended to convey was that having a child with special needs is undesirable or unfortunate. Had she known that only feet away was a child with special needs and her mother maybe she would have better censored her words.

I wasn’t in the mood to educate otherwise I might have said something. There are so many thoughts and emotions going through my mind. What I wanted to say in anger was that she should mind her own business. I wanted to sarcastically tell her that I’m sorry that you feel that having special needs is such a curse that you would not condone parents of a certain age to have children. I’d also say that she should know that you can be young and healthy and do everything by the book and still have a child with special needs. These things don’t discriminate based on age. I’d tell her before you go making judgments about people or saying things that you know nothing about maybe you should just not. Of course I didn’t say any of those things and maybe I’ll get better at controlling my anger and frustration with the ignorance of our society.

After thinking over it I contemplated how I could have graciously responded. I wish I could’ve been brave enough to tell her that her words were hurtful to me, that I have a daughter with a rare genetic syndrome whom I love very much. Though this life is difficult I would do it all over again to have my daughter. I love Elsie and I love every part of who she is. She is not just a “Syndrome” she is a unique and special little girl and part of who she is because of her diagnosis. Though she may be 10 months and not roll over or sit up or crawl or even eat like a typical child, she is not defective or a mistake. She is spunky and sassy and, she’s one of the happiest and most content babies I’ve ever met. I don’t know if she would be all of those things if she wasn’t missing part of her fourth chromosome. She is a fighter and her health issues have made her that way. I won’t say there are not days when I wish I could take it all away and make life easier for her and, let’s be honest, for us as parents.

She’s not a burden to be borne or an anchor to weigh us down. She is special. She is beautiful. She is a creation of God. And her life has purpose. We don’t want your pity, your judgment or your insensitive comments. We just want our daughter to be loved and respected like any other typical person deserves. What is “normal” after all? No two people are alike. we are all different. How about instead of looking at those differences with contempt or pity, let’s celebrate them.