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Everyday Caregiving

6 Nov

It’s the things we do by rote, things that have become second nature, things we don’t even realize we do until someone looks at us with one eyebrow raised and a “Well, that’s weird” expression. Things we do for a teenager who should have been doing these things for herself years ago. Things we avoid in order to keep the peace.

Those things have become our norm.

I am Maura’s mom. I am also her full-time caregiver.

A mom teaches her child life skills so her child becomes an independent adult. A caregiver fills in where those life skills have been hampered or have no developed. Two very valuable vocations, one pays crap, the other doesn’t pay at all. Lucky me, I get to do both for free.

Good thing my boss is so cool.

Today, I did things for Maura like wash her hair, blow dry it, helped her get dressed, helped her turn on a show, helped set up her tablet so that it could charge via extension cord. I threw her clothes in the washer. I shall throw them in the dryer, and put them away for her. I took care of other needs she had that I won’t get into.

I also watched her pull out pizza boxes and dish herself up some cold pizza for breakfast like a regular teenager, intervened when she picked a fight with her sister over the use of the television, and fought her for the chocolate her brother gave both of us.

There’s so much normal interspersed with the extraordinary. And the thing is, the extraordinary I do for her is something expected of all moms when their children are infants, toddlers, preschoolers. That stuff extended its need naturally. It’s not like one day she was blow drying her own hair and the next day I had to do it for her. I’ve always had to do it for her. Someday she may be able to do it on her own.

And that’s the hope I’ve been given. For each task I do for her now, each act of caregiving, I still have the hope that she can manage it a bit on her own someday. Any step of independence, no matter how small, is huge. Last year, I still had to prompt her to get out of the bath. And by prompt, I mean plead and bargain and empty the tub first before being able to pry her out of it. Her ending her bath on her own is amazing.

She also now will let the dogs out or back inside when asked. She can take her plate to the kitchen. She could someday empty the dishwasher or take bagged up trash to the garbage can. She can help around the house, which would be awesome.

But for now, I’m still cleaning her room.

Outside of the house, it’s a balance of giving her freedoms and keeping her on target. There’s verbal prepping that I must do, triggers to watch out for, and always on the look out for quick exits and restrooms, depending on the emergency. It’s how I’ll try to park so that she has extra room to open the car door without hitting another car. It’s worrying the few times I let her go into the bathroom alone. It’s hoping we can hit three stores only to change plans after one. It’s both an opportunity for self-advocacy and a lesson in following rules and taking turns. Mom needs to go to the dog food aisle. Yes, we can look at clothes. No, we’re not going to the toy aisle today, you already picked out a book.

It’s letting a stranger ask her a question, and waiting to see if they understand her before stepping in to provide translation of what Maura said. It’s letting her move at her own pace when the person behind us thinks we’re going too slow. Which happens a lot. On stairs. It’s backing her up in her the right to own her space in this world. It’s letting her choose the music in the car, even though shotgun should shut her cakehole because driver picks the music.

It’s letting her choose her backpack, choose her jacket, choose if she wears socks with her shoes. It’s standing back to let her put on her own socks and stepping in to help with the shoes. It’s cutting her fingernails.  It’s fixing her plate at dinner time because she will overfill it. It’s letting her pour her own drink. It’s pulling back her hair into a pony tail every time she asks, but asking “Do you want one or two?” first. It’s putting sheets on her bed because she just. can’t. do. that.

It’s finding the energy to go watch when she says “Watch Mom!”. It’s sitting to watch a movie for the 87th time because she’s patted the seat next to her on the couch. It’s high fiving her, hugging her, tickling her because she still needs those things constantly. It’s me at my friend’s party, being the one checking on her teenager every five seconds while on the swing set – partially for safety reasons, and partially because the girl is enjoying herself so much, I can’t help but mirror the big smile on her face.

It’s everything, all the time, twenty-four hours, seven days, 52 weeks, and so on, and so forth, world without end, amen.

I’m lucky she puts up with all my interference.

I’m lucky that this very cool kid lets me hang out with her.

I’m lucky that when I leave, she misses me, and when I come back, she gives me the rockstar treatment, screaming and laughing and hugging me now that I’m home.

I’m lucky that she makes this dual life of mom and caregiver not just easy, but fun.

It’s exhausting at times, and the pay, as I said, is less than crap. But the rewards – getting a front row seat in her amazing life – are worth it.

 

 

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[photo of Maura, long brown hair hanging down, pink jacket and gloves on, face beaming as she enjoys a rare PNW snowfall]

 

 

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The most spot-on fortune cookie fortune ever

1 May

Last night, we hit up our favorite Chinese restaurant. We go there often enough that a couple of the staff recognize us when we show up, and they all are very good with Maura.

Last night was no different – we sat, ordered, drank tea, ate, watched Maura work her magic with chopsticks (when in doubt, just stab the food with the stick), and then it was her most favorite time of the meal – cookie time!

We get the bill and three fortune cookies. We each take one and read generic fortunes of “Good things will happen in your future”, and eat our cookies. But then, one of the waiters who knows us showed up with a bunch more cookies, much to Maura’s excitement. She takes one, breaks it open, “reads” it (because she’s still learning how to read), and then passes it to Josh.

Josh reads it – “You will never need to worry about a steady income.”

Josh looked at his daughter. “No, that’s my job.”

And we laughed.

 

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But it was the truest fortune we’ve ever gotten there. Maura will never worry about money. Her brain doesn’t work that way. She sort of gets the concept of money – you need it to buy things – but beyond that basic concept, she is vague. Money for bills is not on her radar. Budgeting is a concept she doesn’t get. She knows we take care of her, feed her when she wants food, pay for stuff at the store.

We should just be happy that the girl is easy to please. She can have expensive taste, but at the same time, she’s just as happy with a $3 Slinky as she is a $500 trampoline. She doesn’t get brand names, so doesn’t need the $65 tee from Aeropostale, she’s cool with the $5 Old Navy tee.

Household goods? They appear magically via Target. Water? Electricity? Internet? Well that all just magically happens. Some days, I say yes to lunch at Chipotle and a trip to Target. Other days, I’m limiting her to just one thing at the store (which means she picks out five things and we haggle down to two or three) and walk her past the Starbukc’s while chanting “No, we bought a drink, we don’t need Starbuck’s.” (which is a lie, you always need a Starbuck’s, am I right?)

There is no cost involved in any of this in Maura’s mind. She knows is gift cards buys you stuff, and Mom’s cards can buy stuff, and cold hard cash can buy stuff. How the cards buy stuff is something she doesn’t worry about.

We do work on it. I’m the mom in the toy aisle going “That’s $20. That’s too much. Can we find something that’s $10?” Eventually, she may get it.  Maybe. In the meantime, I’m working on it.

So no, the idea of having an income, and a steady one at that, is not something Maura worries about. Or will ever worry about. She’s our forever girl for a reason, and this is just one of them.

 

Dear Converse

16 Aug

Hi. How are you? We’re doing great here.

I’m just writing this blog post because you guys, inadvertently, did something to bring some more independence to my daughter.

We love our Converse sneaks in this household. Especially me. But when I brought home a pair of black ones from the store the other day, Maura instantly snagged them.

“OOOOO! SHOES!”

And she wore them all day. But she also kept coming up to me going “Mom…help…” because the shoelaces came untied. She can’t tie shoe laces, and though I’ve tried to turn her onto those snazzy laces that don’t need tying, she insists on having regular laces like everyone else. So, I tie a lot of shoes for her.

But when I went to the store a few days later, I noticed a pair of Converse sneakers…with elastic backs and the laces done up in a way that I realized “OMG they don’t need tying!”

I grabbed a pair in Maura’s size, and brought them home.

“LOOK! SHOES!” I exclaimed.

And she was all “Mom, help?”

And I was all “No, you can do this yourself.”

And then she sat down and put on her new Converse sneakers ALL BY HERSELF. In the time it would take any thirteen year old girl to put them on.

So I’m blogging about this to let others know that there are Converse sneakers that teens with motor skill issues could actually manage themselves possibly, and still be all totally on trend.

Even better? They’re too narrow for her wide-footed sister to steal. I know, because they’re too narrow for me as well, lol!

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