Saturday evening
David and Kerry just walked out the front door to take a stroll around our neighborhood…it’s 7:40 at night, and all the streets of our subdivision are lined with paper bag luminarias – a Christmas tradition here in our little neighborhood. Kerry and I spent an hour this afternoon at a neighbor’s house, filling bags and enjoying meeting some folks who live around here.
Not sure if you’re picking up on the theme here: Kerry and I worked on the bags. David and Kerry went for a walk. I’m sitting here in my living room, watching the shadows of family groups walking down our street enjoying the festive, cold air…because someone had to stay with Stephen. We couldn’t go as a family to work on the neighborhood project – Stephen wouldn’t have understood and would’ve just made things harder. We couldn’t go as a family to walk around and enjoy the lights – Stephen won’t wear coats this year and he would’ve never understood just going for a walk.
It’s been 7 ½ years since Stephen was diagnosed, and today the pain feels as new and raw as if I only found out yesterday. His issues impact EVERYTHING – family life, shopping trips, the TV being on, the lights being off…and I’m so sick of it I could scream. Christmas used to be my favorite time of year. The magic that seems to make most people a little kinder, even for a few days, the chance to buy special things for people I love, the music on the radio…all of that feels empty, no matter how hard I try to recapture the good feelings.
I’m tired of this chronic sorrow. I’m tired of never feeling like my family can just EXIST. I’m tired of hyper-planning every damned move we make. I’m tired of feeling bitter toward others, just because they don’t have the same problems we do. I’m tired of feeling hopeless and in despair, and worrying about a future that seems devoid of any chance of happiness. I’m tired of imagining horrible scenarios about Stephen’s future, about having to admit we can’t care for him, and wondering who WILL.
I am more tired than these words can express of being told that “you must be very special people for God to have given you this child.” I can tell you with total authority that I do NOT feel special. I feel cursed. Stephen seems cursed. I watch this giant baby boy struggle when even a tiny thing goes off schedule. He is sick with a cold now, and no amount of sneaking, cajoling, forcing, mixing or pleading will get him to take some cough medicine so that he doesn’t keep himself and his mother up half the night. No amount of begging, social stories or bargaining will get him to put on a damned coat when it’s 30 degrees out.
I read a book to him today – a Dora the Explorer compilation – and it is a sweet experience for the most part, because we always sing the songs that are Dora standards: the Map song, the Grumpy Old Troll song, the “We Did It” song. But today during story 4 I got distracted by the mailman delivering some packages, and I forgot to sing the Map song at the right time, and I kept reading. Stephen got more and more agitated. When I realized what I had done, I tried to go back and sing it but that was no good. No, he had me finish the 140 page book, then we moved to another room and I had to start all over, at the very beginning of the book, this time carefully singing at all the right times. I’d give anything to be able to TALK to him, to tell him that we’ll read it again later because Mama has some work to do…or to say, “Oops, forgot a song – let’s go back and sing it now.” But that won’t do, not with autism. The path that thoughts follow in his brain is so convoluted, so rigorously one-way, so intent on passing the familiar landmarks…and exhausting to someone who knows there’s a shorter, more direct way to get to the desired destination.
Sunday morning
I’m finishing up this entry the next morning, so there is a predictable lessening of the tension and a more relaxed feeling in my stomach…for now. We are on day 2 of what seems like a very long school-less period of time, and, as hard as I try to focus on the positive, to enjoy Kerry’s excitement, to seek out opportunities for fun, there’s a shadow that persists in hanging over it all – a voice that whispers, “Look at that family over there…four kids, all normal…look how easy it is for them to move through the mall, look how they smile…” or more often and insidiously it slyly says, “Listen to that mom, fussing at her 3 year old, telling him to stop singing so loudly – she doesn’t have a clue, does she? Wouldn’t you like to trade ‘problems’ with her? And all these people around you, fretting over which Christmas sweater to buy or what kind of cappucino to order... Stupid idiots - how dare they think those are worth spending two seconds on?” That’s when I look at myself with disgust, when the bitterness invades my genuinely compassionate soul, and I avoid associating with the outside world because it just hurts too much to be bombarded by images and sounds and situations that remind me of what I have lost, and what I will never recover. My son has been stolen from me in many ways, and will never be independent, never have a girlfriend, never go to college or get married, and there are times when that knowledge is an unbearable weight. Yes, I have an older son who is amazing and talented and a true joy in my life. He is wise and compassionate beyond his years: as I took my turn walking through the lighted streets with Kerry last night, he said, “Sure, mom, I wish I had a normal brother. But nobody could have a better mother.” While I feel woefully undeserving of such praise most of the time, it warmed my heart like nothing else could.
But in May 1999 another son began growing inside me, and he was supposed to grow into a different yet just as aware and engaged person as his big brother. For a little over a year of his life, I lived in days of hope – on the calendar of my past, that year is edged in gold: “The Year Before it all Fell Apart.” I had two darling little boys, two plump angels that I ushered around to the store, to Mother’s Day Out, to family gatherings. One blond toddler whose world was expanding at a great rate, and a dark headed baby who was busy just being a sweet little soul who had come so unexpectedly in our lives. For one year, I lived in peaceful ignorance of what was to come. For just over a year, I didn’t worry about the future – I was smugly secure in the happiness of the road ahead. Two little boys, two years and four days apart in age, who would grow up together – in my mind’s eye I could see Stephen toddling after his brother, the companionship they’d have as playmates, even the inevitable arguments and wrestling matches. I can’t let go of those dreams – they are such a part of me that the constant battle to cut them out of my soul leaves a ragged cut that refuses to heal.
Yes, things could be worse. Yes, I do know that many people struggle with more heartrending things than we do. Of course I know that everyone has problems and that I have no right to claim mine are worse. But right now, in this season, too often I feel desolate and hopeless. Right now, I feel that I’d switch problems with just about anyone.
I am completely and wholly grateful for my children’s existence. I am fortunate to have an extraordinary son who has already surpassed expectations.
But I was supposed to have two.
