For me, one of the most difficult daily challenges of having any children, but especially an extra-special child is that I worry. I worry all. the. time. I may not be sitting around wallowing in it all day long, but it is there. It's in the back of my mind at all times. I participated in a rather spirited discussion online recently where the challenge put forth was, essentially, "Why do you think your kids have any more challenges than any other kid? What makes you think that you are so special?" Those weren't the exact questions, but the point was clear - parents of special needs kids are whiny and entitled and judgmental. I actually did give my response some thought beyond my initial "walk a mile in my moccasins" knee-jerk reaction. What do I think makes my situation different?
I am not naive. I have a really great life with a really great family. I do not think that my challenges are equal to the truly difficult situations that many families face. I have a roof over my head, clothes on my back, food on my table, a car in the garage and I don't ever have to worry about any of that being there each and every day. I am grateful for my life every single day. It is abundant in the most important ways and in many less important, but still very notable, ways.
However, the difference, I think, for me comes down to worry. I worry about S, just like any mother would. I worry that some dumb boy will break her heart (inevitable); I worry that she's going to make some horrible mistakes as she grows (likely - didn't we all?); I worry that her injury last Fall will have a lifelong impact on her (time will tell). What I don't worry about is her general future. I know she will graduate from high school, go to college, get a job, contribute to her community, find love. I may not know the exact details, but I can clearly see her future.
With K, I don't have that same luxury. I worry all the time about her future. I worry that she will never catch up to her peers in academics. I worry that her self-esteem will take a beating because she struggles in school in ways her peers never will. I worry that by the time she graduates from high school, she will be so burnt out by school that she won't go to college. I worry that even with her big heart, no one will take the time to see her and love her the way she deserves to be loved. I worry that I don't have the foggiest notion what her future will look like.
I need a break from the worry. Who doesn't? I worry too much and though I hate to admit it, I need to take a break. I need to find my happy place. For a long time, that place was church. For a couple of hours, once a week, we were just a normal family. I didn't have to worry what people thought of K or how she came across to them. Everyone there just loved her...and us...just as we are. When that started to change, when she was standing alongside the few other girls that were at church, I could no longer leave her differences at the door. My two hours a week of "I don't have to worry about her" time vanished. So, we changed churches. That wasn't the only reason, but it was one reason. It was a good change for us and once again, I could just enjoy my two hours on Sunday free from the worry. We were just "us" again.
Until last weekend. S & K went to training to serve as acolytes at church. They have done this at our previous church and really enjoy serving at the altar. K, especially, has been looking forward to this. Then, our marvelous priest - whom we really adore - set forth his expectations: you must sit still, you must not play with your acolyte robes, you must not look bored during the sermon. And just like that, POOF! I was right back to having to worry again.
I still have not decided exactly how I will handle it. Helicopter Mom in me says to call the priest, explain K's situation, ask for his patience, beg him not to "fire" her because it means so much to her. Rational Mom says to wait. See how she does. She often rises to the occasion when I least expect it. Either way, though, I've now got worry sitting there in the back of my head during those two sacred hours on Sunday.
And, in my typical overanalyzing way, I thought about this until it finally struck me that sometimes, in my own worry, I forget that I should have faith in K. Faith at church is particularly appropriate, don't you think? I short-change her by assuming things will go poorly instead of believing in her ability.
Once again, I realize that my extra-special child has enriched my life in more ways than I know. Worry keeps me in a negative place; faith puts me in a positive one. She reminds me how very important faith is and with that, I will always have my happy place.