As those of you who’ve been periodic or faithful readers of this blog know, I have a daughter named Shana who has Trisomy 21 syndrome - more commonly known as Down syndrome. She just had her 11th birthday and this particular season reflects more than the passing of a year – it’s marked the start of her transition from little girl to young woman.
A year has passed since I began sharing my thoughts, etc. with you through these online “essays”. In that time, the post that’s received the most hits (by a wide margin) was something I wrote about Shana last Christmas. It was entitled “Not a Creature was Stirring“. The popularity of this post (based on the overall level of traffic I get) made me realize that there are many people out there who have or know special needs children. Like me and my wife, they’re always looking for information, references, encouragement, etc. as they navigate through a life that’s foundationally different from that of families who have normally-developing children. I say all this because today’s post is essentially for us.
I must admit that with busy season at work (through the end of November) and the Thanksgiving and Christmas holidays, I hadn’t given much thought to Shana’s transition. It was just floating around out there someplace in the back of my mind. Yesterday, with a single incident, it crash landed right in the middle of my life/consciousness. Shana and I went out for an afternoon together. We had lunch at a local mall and because she has gift cards and Christmas money to spend, we wandered in and out of stores looking for some “inspiration”. It was fun watching her look for clothes; walking down the aisles like a general inspecting the troops, leafing through items hanging from the racks, and occasionally holding one up before her, checking the mirror to “see how it looks”. I thought it was all “pretend play” – an imitation of something she’d seen on TV – until I began selecting items and offering them to her. Daaaaaad! Then an emphatic NO - I don’t like it! Unlike her older sister, who’s totally into the “dark colors” mode of dress that’s very popular now, Shana prefers bright, often wild colors. We ended up in Target, where after a half-hour of intense browsing, she picked out a bright-colored Hello Kitty dress. That’s another thing. Shana prefers “girly” stuff and loves dresses. Her sister (Rachel) wouldn’t be caught dead in one. When we got home, she immediately (and proudly) ran into her sister’s room to show off the dress and Rachel just looked over at me shaking her head – the expression on her face was absolutely priceless :-)).
As we were leaving the store, we had a little “accident”. Fortunately, I’d sent Shana into a single-occupant, unisex bathroom. I waited for several minutes after checkout, then called through the door asking if she needed help. She shouted back YES! Fortunately, we had a new dress for her to change into. On the way home, I realized again how vigilant I have to be when I’m out alone with her. She’s too old to go into the men’s restroom where I could accompany her and I certainly can’t follow her into the women’s restroom. Accidents like this are very infrequent, but it’s more the thought of sending her alone into a place where I can’t go. Yesterday we just happened to be flat-out lucky. Later in the evening, I was reflecting on what had occurred and realized again that life with Shana IS unpredictable and always will be. Back when she had heart surgery at five months of age, we prayed that she would have a long and healthy life. At that time, there was no way we could have wrapped our minds around the thought of puberty and the challenges of guiding a child like Shana through it. The whole idea still terrifies me today – a fact that was so resoundingly reinforced by yesterday’s incident.
These days, people pay hundreds and even thousands of dollars learning how to deal with and “manage” change. Life with Shana has taught us that dealing with change and living with uncertainty is more a state of mind than a set of practices. As such, we are blessed to have loving family and friends and a community of faith who help us maintain the “state of mind” we need to face whatever today and the future may bring.
Happy New Year!
