I Choose "Not Busy"

This post was migrated from the original Ice Cream and Autism blog (beckadrum.com). Some images may be missing due to the migration.

It’s become a cute, almost fashionable thing to say that “being busy is a choice.” It’s my new favorite thing to hate. Maybe for some people busy is a choice. I envy those people.

If I actually had a choice in the matter I would choose tonotbe busy. I promise. Ask anyone who knows me: I’m really lazy. My kids have turned papers into school that say “Mommy’s favorite thing is: sleep.” That’s my choice. Ichooseto write full time. Ichooseto lay in bed and watch Netflix. Ichoosesleep.

I don’t actually have a choice. Having a special needs child will do that to you—take away your choices. It’s been a long time now that I’ve had to choose between cleaning the house or making it to doctor appointments. Oh, so many doctor appointments, or therapies, or tests, or arguing with insurance companies, or researching Medicaid/Medicare waivers, or just trying to keep two kids alive and fed.

Every day I had to actively choose tonotclean,notgo to the grocery store,notdo the laundry, or any of the other things that stay at home moms do. I had to make that choice so that I could get my kid to the hospital for his nuclear medicine test (it’s called a Meckel scan) or get to speech therapy on the other side of town three days a week.

I felt like a failure, of course. My amazing husband was going to work all day and then coming home and doing housework. What was I doing?! The housework wasmyjob. I couldn’t manage to keep two small humans alive and unload the dishwasher by 5:00 pm.

Even if you’re prepared for the actual physical time (because anyone with eyes could look at my calendar and see that my days were packed),Iwasn’t prepared for how emotionally draining every single step is. I didn’t know it, but it turns out that emotions will eat up your time without you even realizing it.

The day would be going by and I would be fretting about how we’re going to make it from this place to that one on time, why his bloodwork wasn’t showing what any of the doctors anticipated, why he wasn’t reaching any of his developmental milestones (and still quietly holding hope that everyone was wrong and he would just “grow out of it”) and suddenly it’s bedtime. How did that happen? Did anyone eat lunch? (Sometimes the answer was no because I forgot to feed my kids lunch.)

I just never had any time. I still don’t.

Our days look different now. The kids are in school, which makes scheduling appointmentssomuch harder. Pulling Yoshi out of school (read: disrupting his routine) is a terrible idea. I can’t schedule every appointment after school hours, it’s just not possible between my schedule and the doctor’s, but I try.

The second the kids get home from school things are crazy. And no, I can’t quit. I can’t quit swimming because Yoshi will drown. I can’t quit piano because I can’t afford occupational therapy and it’s the best thing I’ve got for working his fine motor skills. I can’t quit gymnastics because I can’t afford physical therapy and it’s the best option for gross motor.

I don’t actually have a choice.

That’s what people don’t understand. No one expects me to quit taking Yoshi to his doctor appointments or therapy. If it wasactualOTorPT, no one would bat an eye. No one would look down their nose at me (with a little disdain and a lot of scoff) and say, “Why don’t you just quit?”

Because it’s all I can afford. All those battles with the insurance and years of red tape with Medicare and Medicaid didn’t get me far enough. We paid for speech therapy out of pocket. We paid copays and deductibles and coinsurance for his procedures and surgeries. We’re all tapped out.

Hereallyneeds occupational therapy. So much that it breaks my heart. He can’t write. ButOTis extremely expensive. I’ve tried to get it through the school—that’sanother post. I’m doing the best I can.

I also have another kid. A kid who has spent his entire life in the shadows. He has his own (more normal) medical needs. When he wants to take up a sport, or join a club, or just go to a friend’s house, how do I tell him no? Yes, it makes my life harder trying to shuttle him around to his commitments. But he should get to live as normal a life as possible. Yes. That’s guilt.

It takes a lot of time to work out our schedule. Our regular, routine schedule. As soon as I get it figured out, something throws it off. Big Brother’s swim practice times change. The piano teacher needs to change days. Something. I readjust. I make it work.

Then, every week, I have to fit in the “extras”. The orthodontist appointments, the monthly doctor appointment that I managed to schedule after school this time, their annual check-ups, the dentist, I could go on and on. Something always comes up.

That’s just after school. Everything changed when I took a part-time job. My already limited time got squeezed even tighter. During the school day, those fleeting solo hours, I cram in the parent-teacher conferences,IEPmeetings, andeverything else I used to do.Very little of it went away.

I still have to battle insurance companies (though I have given up with government assistance.) I still have at least a couple of doctor’s appointments or therapies a week—the ones I couldn’t schedule for the kids after school or for myself. Ah, me and my doctors. If you don’t know me, I’m a walking medical marvel. If I had a nickel for every time a doctor stuttered, “But, but, that’s not possible…” to me, I’d have a lot of nickels.

I’m also trying to write. That’s always the first thing that doesn’t get done. If you’re a mom you know that your wants are the first thing on the chopping block, followed by your needs. The kids need taken care of, the house, everything else comes first. I have a job that pays and a job that I want. Guess which one gets more of my attention?

Every morning I get up and I make a plan for the day. I work out a schedule to get myself and the kids every where that we need to be. I try to sketch out my whole week in my mind. Usually around noon, I get to tell my husband, “This day isn’t going how I planned.”

By the evening I’m so emotionally drained Ichoosenot busy. I let my husband take over as soon as I can, crawl into bed and pull my blanket over my head, and watch Netflix. There are a million things that still need done that I just leave undone.

Being busy isn’t my choice. It’s been born of a combination of Yoshi’s needs and guilt over Big Brother not getting enough out of this life. There are days that I weep over the steering wheel in the allergist’s parking lot waiting for Big Brother to get his allergy shot. This isn’t what I choose.

I do what I have to, knowing that it’s notquitegood enough. Please make the choice to keep the words, “Why don’t you quit?” to yourself, especially when talking to a family with a special child. Please don’t tell me that I am choosing to be busy. I’m not. I’m choosing to take care of my family. Please stop making me defend that choice.

Comic courtesy of my husband