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31 for 21: The End…

… of October brings an end to Down syndrome Awareness month and our participation in 31 for 21 for the third year. If you followed along; hopefully, you were able to glean a bit of normalcy or ordinariness that glistens in the corners of our extraordinary lives. I know that normal or ordinary is a relative term. That some may have followed along this month still quietly shaking their heads to themselves and offering up a prayer of gratitude for their own lovely lives. I recognize there are families out there that have much more medically complex lives. What’s routine for them, is not what other families face on a daily basis. I admire and feel a great love for these families. For their pure and true love and ability to live in and celebrate the present. It’s funny when people think about someone else’s life they often feel compelled to comment that they “just couldn’t do it” or “wouldn’t know what to do in that situation” or “it must just be so hard”. The reality of it is that it’s hard work to raise any child. You do it because they are your child- whether they grew early on in or under your heart. You really shouldn’t try to imagine yourself in that other family’s shoes. If that became your reality; it would be your shoes, not theirs. It just wouldn’t feel the same. I think one of the biggest dichotomies between having a child who is labeled as having special needs and having a child that is labeled as typical is how we picture the future. For some reason, when we stare down into the face of our tiny bundle one of two things seem to happen. For the “typical” child, we picture a grown up version of them- maybe a better version of whichever parent they resemble and all of the amazing things that may be a part of their future. Once that child bears the heavy label of Down syndrome, we tend to not see our child anymore. The picture we conjure is of a random adult that we may have passed in the mall, who bagged our groceries or some other stranger who is foreign to us. Part of that is not our fault, you have to look for role models to be able to visualize the future, and in the special needs world they don’t come quickly or easily. Society’s view of a person who has special needs is not necessarily a gracious or accurate one. Whereas other superhero role models are rocked in quick images on the television on a daily basis; doctors want the parents to be prepared for what might happen, what is not typical, what is deemed difficult. What you won’t easily find in the books you had been gathering to prepare yourself. I understand why they do it. But I wish there was also some way to routinely acknowledge that in the case of Down syndrome, so many other wonderful little ordinaries have not just been stolen from you. That whether in the end your child is indeed more alike than different; that they will know you, they will do ordinary and extraordinary things. They will bring a great love into your life and bless you with the strong heart of a parent who knows their child and will go to the ends of the earth to help them be all they can be. Just like they would even if their little was only given a mere 46. And now we return to our regular programming.

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