I sometimes think that the impression this blog creates is that Shierry is improving all the time and is just like a normal kid. Or that these dodge balls come at us and we swat them down and say "No, not today, friend" with strength and grace. That's not exactly correct.

I don't know what normal means, but she is not it. Well, that's not exactly correct either. She laughs and plays and almost walks like a normal, healthy toddler. But, a lot of what she experiences, how people react to her, what is at stake every day of her life is not normal. I guess what it is, is that most kids have significant room for error. She and her special friends do not. Every kid gets teased. What kids ALREADY say to her cannot even be classified as teasing.

So. OK. If my crazy formed concentric circles, organized by number of causes and intensity, the outtermost layer would be Stress. The weather, talking on the phone, food, excessive dog hair accumulation. They pop up on the regular, but aren't all that serious. Then there would be Worry. Work-life balance, mortality, Ukraine. These things might make me cry and cause me to lose focus, but they're temporary.

The innermost circle would be Fear. What I'm confronted with every day, what I dream about. What lays the foundation for the wall that is periodically erected between me and other parents. I am afraid of two things: Shierry not getting the healthcare she needs and other kids.

I spend a significant amount of my week, when I should be actually working at my actual job, on the phone making appointments. When an office doesn't promptly call back, when appointments can only be made so far into advance as to be impossible, or when an office person is bad at their job, my first thought is always defensive. I don't think, oh darn, that's inconvenient. I think, F*** you, trying to keep her from getting what she needs. While they are justifying their absurd policies or difficult behavior, my brain is jumping from the immediate problem to how it affects everything else down the line. A rescheduled appointment begets more rescheduled appointments. I have to think about what her checkups and surgeries and hearing/vision tests are going to look like three, six, nine months out. Nothing is in isolation. She needs all of it, consistently, in order to catch her up and keep her apace with her soon-to-be classmates, physically and socially. I can’t let a single appointment fall through the cracks; she needs a steady stream of monitoring and coaching.

I have some semblance of control over scheduling, but in reality, we, Shierry’s parents, and her doctors do not make the ultimate decisions for her health. My insurance company does. They pay the bills. We are middle class people with good insurance. Compared to other peoples’ insurance, not compared to ideal medical coverage. I have to carefully monitor every claim sent by a provider to the insurance company, every bill sent to us from a provider, every letter sent to us by the insurance company, to make sure that we’re being charged the correct amount and that things were appropriately covered. I am not a naturally organized person, so I had to work my way up to the tabbed and highlighted insurance policy and the accordion folder of bills organized by year and specialty. Every time we receive a piece of mail from the insurance company, my heart starts to race. I have to put it down. I am unable to open it right away. What if that piece of mail is telling me that we’re on our own for this surgery? Tens of thousands of dollars. Or even if they decide, that, actually Shierry doesn’t need that speech therapy or that ophthalmologist appointment. Hundreds of dollars each. It adds up fast. I don’t know what we’d do; limited money means limited care. My vigilance and luck have saved us so far. I can be the Platonic ideal of on top it, and luck, it can still evaporate.

We have had pretty close to zero complications from anything a doctor has done to her. She undergoes lots of procedures. All of her doctors are knowledgeable and, I think, try their best. Not even a good doctor bats a thousand, people. Let alone a bad one. I trust and think positive leading up to a procedure, I don’t obsessively fret about it. But every time they take her away from me, when a nurse holds her and I don’t, when they put her under anesthesia, I change in an instant. I don’t know how to describe it, my metaphorical heart catches up with my actual brain I guess and sends out panic and sadness to all the other body parts. We carry her towards the surgical theater, stopping at the comically tiny stop sign. I hand her to a nurse, they wave and walk through a set of double doors. She goes away, and I know that she might not come back to me whole. This has happened to kids we know. A bad result is not inevitable, but it’s not simply theoretical either.

As for other kids, a lot of them are totally fine!!! But the stuff that comes out of some of their mouths…I swear. I plan to delete this blog entry at some point. Nothing in this will surprise Shierry, once she can read, but I don’t want her to feel like she was ever responsible for anything about how I feel. She never makes me sad, other people do. So anyway, Shierry is barely one year old and has been called “a scary baby” and “creepy.” One kid asked no one in particular, “what’s wrong with it?” and some kids act like she’s infectious. I don’t know, y’all. I know people say, oh kids, they just say what they think, they don’t mean harm. But I’ve also been around kids who ask “what hurt her” or “what happened?” and then proceed to play with her normally or go along with their business. Or who protect her from their frisky little brothers because they know her eye is sensitive. Or who hug her and keep bringing her apple turnovers. I don’t think kids are incapable of censoring themselves or being kind. You can be curious and not an asshole, is all I’m saying.