I have been off the computer lately in order to accomplish the many to-do's around here. One of them is to organize pictures in iPhoto and get back-up discs made. Then I organize the disks into their own books. I love being organized; when I have the time.
Well, as you know, one organizing/cleaning job just leads to another and I found myself in the spare room organizing the boys' "memory boxes". Evan and Nolan have old diaper boxes and Calvin finally (8 months later) has his own paper ream box (or whatever you call it). Calvin's is the largest.
I find myself getting teary eyed thinking about this.
When I first learned Calvin has Down syndrome I thought about photos. I didn't think, or maybe I didn't want, pictures of him taken when he was born. I don't quite understand it completely because that was such a "before". "Now" is so different.
The day I came home from St Paul when Calvin's heart defect was diagnosed and the label of Down syndrome was dropped in my lap I called my friend Amanda. Grandma Jo Jo and Grandpa Wayne had the older boys because A) Joe was in California on a business trip - yes, he was not with me that day and B) my Grandpa Sykora's visitation was that night. So, I felt alone and very worn out and deeply hurt and scared. Amanda works for Birth to Three Early Intervention, so I wanted to let her know. Anyways, to try and make a long story short, I confided in Amanda some of my fears. What was behind those fears was this complete lack of knowledge. I literally thought that my child would not have pictures or picture books because "who will look at them?"
I imagine my boys growing old and having children and someone somewhere down the line picking up the photo-books and looking at "grandpa" or "dad". Calvin will most likely not be a dad, or a grandpa. But that hurts a lot less today. The day before he turns 8 months old.
Other things hurt a lot less as well. I can now have a doctor tell me "people with Down syndrome have ears that do not work the way we would like" and it does not feel like a personal sucker punch. I no longer have to leave quickly to get some privacy so I can cry.
I can now read about Down syndrome and not literally get sick to my stomach and feel like I have emotional whiplash for the next few days. I can look at pictures and not cry about the features my child has that resemble Down syndrome. I can hope for a long life for Calvin where I was once fearful of a too-soon-funeral.
There is much more to World Down Syndrome Day. There is the topic I have not addressed here yet: language. Language when referring to someone with a disability: it is Down syndrome, not Down's syndrome, it is "Calvin has Down syndrome" not "Calvin is a Down syndrome child". "Retarded". We'll talk about all this another time. For now, I want to say that the world has nothing to fear except fear itself. We are so afraid to be hurt, yet the joy Calvin brings surpasses any pain I have ever felt.
Thank you for all your support and all your love. Because of that, the world is a better place.