The first one. The first blog post on my new website, kerimehome.com. It has to be perfect. It has to impress. Has to be a home run. As a dozen topics swirled in my head, I walked along the path that engulfed my neighborhood in a large concrete square. “No, that’s not good enough,” my mind said about the first idea. “Nah…that one I’ll save for later,” said the inner voice about the second. “What AM I thinking??” said the all-too-present critic within about the next idea; “No one wants to read about that!” Come on, I murmured to myself. There’s got to be something to write about that people will find worth reading. As soon as I sensed it, I knew it was there: worry. That deep down rising up happiness sucking soul squeezing worry. My constant companion.
We all worry, at some point, don’t we? Parents worry. Kids worry. Even dogs worry. Special needs parents worry more. To what degree? I can’t say. But I know I worry to an extreme degree. I’ve been a worrier since childhood. I can remember being worried about my first day of school. Worried when the bus was late. Very worried when middle school classmates as captains in gym class had to pick teams, and I had no athletic ability. I was even worried about going to DisneyWorld! (Well, that was more about the plane trip than meeting Mickey Mouse). I remember being highly worried in my eighth month of pregnancy: exactly HOW was that baby going to come out?? Would s/he be alright? Would I remember what they said in Lamaze class? That worry was nothing though compared to the all-out five-alarm level of worry that overwhelmed me like a landslide when the ER nurse said something to my husband that contained the words emergency c-section, platelet count, call family, we don’t know.
That story of crisis, idea # 9, will come later. Looking back on that May night in 2000, I can see that the worry wrapped itself around my core like a boa constrictor and has seldom let go since then. The birth experience was riddled with worry. The weeks afterward – fatigue and worry. My baby had feeding problems, bowel problems, sleep problems. My body was doing nasty things to me, although healing was taking place slowly but surely. Just when some things were starting to feel stable again, we experienced an earthquake. Hello Worry. “Welcome” back. And let me tell you: that boa tightened up when (after a few months of various doctor visits and no answers) we heard the words “Your son has autism.”
In the 17 years since our son was born, it’s safe to say that I could have filled Lake Tahoe by now if every worried thought was a bucket of water. I know, I know…worry saps today of its joy. “Worry is the interest paid on trouble before it’s due.” William Ralph Inge.
Will Rogers said, “I know worrying works because none of the stuff I worried about ever happened.” I wish the song that would ear worm itself into my head was “Don’t Worry Be Happy” (Bobby McFerrin, 1988). Instead I tend to get “Karma Chameleon” (Culture Club, 1983) or some tune from the Thomas the Tank Engine series. (Idea #15 is a blog about how Thomas is STILL in our lives).
But even telling myself not to worry somehow confirms the presence of worry. And giving myself ONE.MORE.THING. to do (i.e. STOP worrying) could very well spike those cortisol levels. I’ve just never figured out how.
As I turned the corner a gust of wind lifted my hair. After eight days of triple digit temps, that Delta breeze felt great. I inhaled deeply (although I got a whiff of dead skunk) and strode on. My now-much-taller-than-me boy slid his boney fingers into my right hand, and I squeezed them. He squeezed back. In the world of a nonverbal child with autism, a squeeze speaks many words. “The worry,” I thought to myself. “Write about the worry.” The inner critic was silent. Start with exactly where I am. And where I am is worried. Worried about seizures. Worried about his future. And we just had a weekend full of worry with a mystery wound that landed us in urgent care on Saturday: something sunk it’s teeth or claws or stinger into Zach’s arm at the elbow crease, and as his skin turned red purple blue fuchsia, my stomach turned with fear. He can’t tell us what exactly happened, and he can’t communicate verbally what he is experiencing. It’s all guesswork.
Honestly, that’s half the worry! Guesswork. I’ve had to raise my child in a keenly different way. Autism has locked his verbal ability inside: the thoughts and feelings are there, but expressive language is completely nonexistent. Therefore, his ongoing needs and how they are met depend on my husband’s and my speculations and suppositions. Every aspect of his care calls for a discerning eye. Every action we take requires shrewd observation and steady decision making. And that’s draining! I know my kid well – very well – and I’ve done a damn good job with those speculations, observations, and decisions. But that doesn’t mean I worry less; it’s actually gotten more complicated as he’s gotten older. Add some teenage boy hormones to the mix, and holy moly…
When I set out to do this blog, I had the initial belief that it must have pretty writings with pretty pictures and pretty stories of a pretty life. Make it look good and people will come. But those beliefs are being swept out into the Trashcan of Make-Believe. It didn’t sit well with me. Not only would 100% pretty not be true, it would be boring! So as I worry (okay, ruminate) about what to write next week and beyond, I will begin by asking myself where I am now. This moment. Today. Because that’s all anybody really has. The past has its lessons and memories, as will the future. A dear friend shared this quote with me (I love quotes) and it fits here: “The reason people find it so hard to be happy is that they always see the past better than it was, the present worse than it is, and the future less resolved than it will be.” Marcel Pagnol.
So as I rounded the corner with Zach and headed home, I squeezed his hand a little tighter for a little longer, looked up at the cloudless sky, told him I love him, and let the worry go for a while. I think an honest approach about special needs parenting and our journey, with the pretty AND the not-so-pretty, will result in a blog worth reading. Maybe I can cross that concern off my mental list, and just go for it. Open heart. Free mind. Honest thoughts. I’m home…time to start writing.