It was a battle that I had won and she had not. After our years of infertility and losses of babies, including one who would have been born with Turner's Syndrome, I have come to appreciate the battle that happens as a human tries to make it into this world with all of their systems working properly.
As I read a posting from a woman who wrote that she never once thought of planning her children's funerals, I realized how different our experiences in life were. It's all I thought about as we went through the twin pregnancy. We didn't know what it was to bring a live baby home, and we weren't sure it would ever happen for us. We did not buy baby items until just before they were born, and at that, we did not open the items and saved the receipts. We refused offers for baby showers, and we only bought one crib, hoping, that at least one baby would come home. As it turned out, obviously, we brought home two full term, thriving babies.
My worries were only temporarily relieved. Once they were home I watched them like a hawk as they developed. Were they making eye contact? Were they social? Did they like to be touched and held? Were their language skills flourishing? I had moved onto my next fear. I grew up with a younger sister with autism and epilepsy, and I wondered if I had passed the gene, whatever one it was, onto my little girls.
We just visited Iowa and stayed with my family. And when I left my girlhood home, my children buckled into their seats, my bags packed to return to my fully functioning life in Minnesota, I felt the same as I always do when I leave.
I feel like I'm leaving a man behind.
Kelli still lives at home. She will not live independently. Ever. I will become her guardian. I knew, even as a young girl in grade school, becoming her guardian was part of my life plan.
Kelli is just like any other person with autism in that she has one very specialized interest that consumes her. The dvd of "Wizard of Oz" plays daily in Kelli's world. She listens to Judy Garland sing "Somewhere Over the Rainbow" multiple times per day. Our sisterly phone conversations consist not of reminiscing of our latest get together in which we drank mojitos and ate gourmet chocolate as we float down a river in a kayak, as my mom and her sister discuss, but instead consist of Kelli commanding me to "sing Rainbow." I comply, sometimes with resentment or frustration, and sing "Rainbow." Despite my inability to sing in key, or even get all the words right, the moment brings tears to her eyes. Guilt twinges at me. "Why do I get so angry about having to do something so simple when I know it makes her day?"
Finally realizing that I wouldn't be un-doing my birthday wish by sharing it with others, I admitted a few years ago the words I would utter in my mind as I drew in a breath to blow out my candles atop my cake, "I wish for Kelli to start talking by this time next year." I made that wish around 23 times, and prayed nightly for Kelli to learn to talk, when I still believed in God. Wanting Kelli "to learn to talk", was my childish way of pleading with the universe to make Kelli normal.
Kelli also has a few other idiosyncracies, such as a fascination with blood, injury, and calling 9-1-1. There are instances of her throwing herself on the floor in the mall, screaming for 9-1-1, security arriving, and myself or one of my parents trying to explain the situation to ignorant people. Or Kelli's affinity for taking off in a dead run, head down, eyes on the floor directly beneath her. One time, she ran into a tree, planted in a mall of all places. Mom and Dad had to drag out a stunned Kelli, while admonishing the childhood insensitivity my brother and I were displaying as we laughed hysterically. Not funny, was the time she took off in her dead run, crushing the family dog under her foot. The four pound dog died. Talk about complicated grieving.
Simple moments in my life, like working out at the gym, or even driving down the road leave me open to sneak attacks of guilt and conflictual thinking. "I have my life and I should push myself beyond my max, every moment, because Kelli doesn't have these opportunities." Enjoying a simple drive home from the gym on a summer night, music loud, sunroof open, I criticize myself for enjoying the moment too much, but then maybe, not enough.
Kelli and her lost battle will forever touch my life and how I live it. I may have, in a sense left her behind, but I'll come back for her. Always.