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We were the parents picking and choosing what health services we could afford for our daughter

2 May

Jimmy Kimmel’s monologue about his son’s birth and discovery of a heart defect is making the rounds. I won’t lie – I’ve never wanted to hug a celebrity more than I did watching his video. I’m so glad everything is going well so far, and praying it will continue to go well.

Near the end of the monologue, after awesomely thanking all the hospital staff, family, friends, Jimmy goes on to say how thanks to the ACA, his son won’t be rejected from insurance because of his pre-existing heart condition. He also says “No parent should ever have to decide if they can afford to save their child’s life.”

I totally agree.

But I agree because a decade ago, we were the parents picking and choosing what we could do for our daughter.

Ours is a tale of the self-employed. Back then, my husband was a consultant, and we were living a decent life. We had three small but amazingly healthy kids. We only saw doctors once a year for check ups. We decided to have that fourth and final child. She too was born healthy, though the pregnancy was the first clue that our insurance was not-so-great – it didn’t cover my “pre-existing maternal condition”, so six months into the pregnancy, we discovered we’d have to pay out of pocket for that pre-natal care the insurance rep told me was “not medically necessary”.

Luckily, my ob’s office had a non-insured rate to bill us at. It was still a chunk of change.

For this, we paid at one point, $700 a month out of pocket.

We still didn’t understand just how bad our insurance was. Not until Maura was 15 months old and our pediatrician sent us for a blood test to check her genes, make sure they were all there. They were, and for that knowledge, we got a bill for $1200 – our insurance, it seemed, didn’t cover lab work.

In this foggy time of discovering Maura had developmental delays, we were left with a choice parents should not have to make – “Do we test? If so, who do we go to, because we can only afford so much testing….” We signed up for the free Early Intervention through the school district in the meantime.

I called the now non-existent Behavioral and Developmental Clinic at the prestigious university hospital. I thought our money would be best spent there, since no one was quite sure where to start with Maura. They claimed they would discuss her case with a group of doctors, and we’d be seen by the correct specialist.

“What’s your biggest concern?” the intake person asked me over the phone.

“She’s twenty months old and not walking.” I stated, then mentioned also the fine motor skill delays and speech delays, to boost our case.

They heard “Not talking, almost two” and sent us to a child psychologist, who did a minor screening, then announced happily to me that Maura was not autistic.

“Well, yeah…” I responded – because the one area Maura shined in was social skills, her EI therapists weren’t worried about autism. “But can you tell me what she does have?”

“Oh, I don’t know, you’ll have to see someone else.”

I left, furious, after paying $250 out of pocket because my insurance didn’t cover “mental health issues”.

One nurse did tell me I should check with the state’s Medicaid program for children with any sort of special needs, that we’d definitely get on it, and that would help with the costs. So I called them up.

“What’s your daughter’s diagnosis?” the representative asked.

“She has developmental delays.” I stated.

“Does she have any other diagnosis?”

“No.”

“I’m sorry, but we don’t cover developmental delays. Maybe if you can get a diagnosis, you’ll be able to get on the program.” the rep said nicely.

“Yes, but we need this program so we can afford testing so we can get a diagnosis.” I sighed.

Still, Maura remained healthy and happy. She grew normally. We paid out of pocket for stuff. Josh changed job roles, going from a consultant, to a partner in a consultant group, that was small, but did provide insurance.

So we went to the neurologist. Who found nothing. We went to the geneticist, who found nothing. We went to the orthopedic guy to get Maura much needed ankle braces, so she could walk straight. Those braces cost $1700. Insurance covered the first thousand, the rest was up to us, and oh, insurance only covers the cost of these sorts of supportive braces once a year – so if your child has a growth spurt two months after receiving the braces, the next pair is on you. Except orthopedics know this so have ways of making that one brace last a calendar year.

At one point, we bought a house. A fixer-upper with 30 year old carpet that tore if you stubbed your toe on it. We ripped up all the carpeting….and then received $3000 worth of medical bills for Maura in the mail. So we paid the medical bills and I threw area rugs over subflooring until we could afford replace what we tore up. Because that’s just how life worked at that point. We paid the medical bills and made everything else work.

And then, Josh applied for a job in corporate America. And I read the benefits package. And I may have grabbed him by the shirtfront and yelled “OMG DID YOU SEE THE INSURANCE PLAN? YOU HAVE TO GET THIS JOB!!!”

And he got the job. And I would walk into doctors offices going “Ask me how much my co-pay is? NONE! I have none!”

It’s amazing how much less stressful your life is when you don’t have to go “Gee, I know she needs to see both specialists, but we can only afford one, so which will it be?” But I also will never forget those times, because they sucked. There  you are, learning that there may be something wrong with your child, but you can’t afford the cost of finding out what that wrong thing might be?

No parent should have to go through that.

But wait – in writing this, I realize I need to back up, to a time before Maura even.

mimmom401

Me and Miriam – April 2001

We had moved from one state to another. And in doing so, our insurance through one state-based firm was supposed to transfer to the other state-based firm. Yet it didn’t. There was a mix up in the paperwork. A six month mix-up that took endless phone calls and paperwork being sent back and forth and lost in the process, and much swearing.

In the midst of all that, we went to my mom’s house that Thanksgiving. Long story shorter, Miriam, then a tiny toddler who was sixteen months old and wore 6-9 month sized clothes, climbed up the stairs at my mom’s. Josh, being a good father, followed her up the stairs, then closed and locked the baby gate when they got to the top. Sean said “Hey Dad, look!”

Josh looked.

Meanwhile, downstairs, I heard a soft thunk. “That’s odd.” I said, as my mother and I both got up from our seats in the living room to go look.

Josh had also heard the thunk. He thought Miriam went into my sister’s room and knocked over something. Then he heard me say “Miriam! Are you okay?”

I was down in the front all, my 16 month old laying on the floor looking dazed. Josh was upstairs trying to unlock the damned baby gate. I picked up Miriam, and was spooked that my child who yelled about everything was being eerily quiet. My stepdad and grandma were now by me. Josh decided to hop the baby gate at the top of the stairs. Just as my stepdad was saying “Here, give her to me, let me see”, Josh came rushing down the stairs.

“She was up there!” he said.

We all looked up, 10-12 feet, and what happened hit us.

Somehow, the tiny 16 month old slipped through a five inch gap in the railing in the upstairs hallway and fell to the first floor. My brain was racing with the thought that I should have never picked her up off the floor. If she had damaged herself, I just made it worse by picking her up.

“What do you want to do?” someone asked me.

“I want to take her to a doctor and have them tell me my baby’s okay.” I replied as I clutched my still not crying toddler.

“Let’s go.” Josh said.

“OMG!” my mom blurted out in horror.  “You don’t have insurance!” Ironically, we had been telling her the tale of trying to get insurance earlier.

“I don’t care, we’ll figure it out later.” Josh said.

$6000 later, we were told that Miriam was, in fact, fine. Miraculously, we left the hospital six hours after arriving, with only a bump on her forehead to show she had fallen. If Miriam had been injured, it would have been a much higher bill. If she had been injured, would we have had to choose what we fixed? We were uninsured, who knows what would have happened if she’d had a broken leg, or head injury, needed surgery or a week’s stay in the hospital. Actually, bankruptcy probably would have happened, to be honest. Because we were racking up $1000 per hour we were in the ER.

Luckily, there was nothing wrong with our tiny toddler. Luckily, the bill was *only* $6000.

My mom ended up filing a claim with homeowner’s insurance, and the man – who had a toddler of his own and a staircase design similar to my mom’s – ruled it a freak accident and they’d cover the entire bill.

Thank God, because honestly? We didn’t have $6000 for medical bills.

We’ve been there, on both sides of the coin. As parents of a healthy child who’s had a freak accident, and as parents of a child who has special needs. We’ve had to choose what to do medically for our children, knowing we would have to pay for it ourselves, or go into debt for it. We have had to choose, do we take her to a neurologist or a developmental pediatrician, because we couldn’t swing both. We have sat with a pile of medical bills, choosing to defer student loans yet again, because student loans would still be there, but we’d want to see the doctor again and we couldn’t be seen if we had an outstanding account.

So as you wipe tears after watching Jimmy Kimmel plead for health care for human beings, especially the tiny ones, remember that this is something so many of us deal with on a day to day basis. There are real live people behind these stories. And these stories are common. Much too common.

I know, because I’ve lived it.

“No parent should ever have to decide if they can afford to save their child’s life.”

 

mauraeaster10 (2)

Maura, Easter 2010? She was having seizures b/c of an ear infection. Luckily, this was all covered by insurance, and she wasn’t excluded from insurance because of her pre-existing condition known as epilepsy.

 

 

 

 

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A conversation about stuffed raccoons with my teen girl

11 Nov

First – did you know that the plural of raccoon isn’t raccoons? Or maybe spell check just never expected there to be more than one raccoon per sentence. Who knows?  (ETA – spell check keeps red underlining “raccoons” even though raccoons is the correct spelling. I know, I googled it.)

But I’m currently reading “Furiously Happy” by The Bloggess herself – aka Jenny Lawson – as she’s coming to town for a book reading/signing – and yes, I have plans to be there.

Now, the teen girl, Miriam, had a teacher last year who hated raccoons. So of course, being eighth graders, her class came up with an idea of stalk their teacher with raccoons. This is how teens show love. The teacher had a love of Johnny Depp, so my daughter used her school issued laptop to find pictures of Johnny Depp and transplant his head onto a raccoon’s body – or vice versa – and dubbed the creature Johnny Coon. Then made a bunch of copies of Johnny Coon to tuck all over the teacher’s classroom.

And you wonder why I want to give wine as teacher gifts.

So I’m reading a book with a happy stuffed raccoon on the cover, right? Surely this is a great way to bond with the girl.

“Hey Mim, fyi, I’m going to this book reading/signing thing. Want to come with? The book’s about a taxidermy raccoon named Rory.”

“What’s taxidermy?”

“When they stuff a dead animal.”

The girl’s eyebrows shot up. “WHAT?”

“Well, the book’s about other things too…but here! Look at the cover! Isn’t it cute?” <thrusts book cover at daughter>

look how happy he is

look how happy he is

The daughter frowned at  me. “It looks demented.”

“But happy demented!”

“Mom!”

I opened to inside cover, which has drawings of the raccoon riding an orange tabby cat. “See here? It’s a depiction of the time the writer tried to pose Rory on her cat…then her husband yelled at her and the cat took of running and the raccoon stayed on!”

Now my teen daughter is just eyeing me like I’ve lost my damn mind, so I went back to reading the book.

“Oh hey! There’s actually two of them!” I stated, turning the book so my teen can see the picture of the two Rorys.

“They killed TWO raccoons to stuff??” she exclaimed in that horrified tone only teens can use.

“Oh no…they didn’t kill them…they died of natural causes.” I explained.

“Oh.” the girl said, relieved.

“Yeah, like by a Ford. Maybe Chrysler.”

“WHAT? THEY RAN THEM OVER???”

“No, they didn’t. Someone else did. Then the taxidermist came and scraped them off the road and gave meaning to the raccoon’s death.”

“MOM!”

I don’t think the girl’s going to go with me to the book reading…

Anything can happen when you call me…

20 Oct

“I’m sorry, did you just tell your son not to lick the cat?” my friend Jen asked me once as I was babbling about something else.

I paused. “Oh. Yeah. I guess I did.”

Sean was a toddler, and going through a licking phase. He’d lick the tv, the screen door, me. As I sat on the couch talking to Jen about nothing, the cat curled up next to me (most likely for his own safety), Sean toddled over. Eyed the cat. Out of the corner of my eye, I saw in slow motion how Sean’s mouth opened, then his tongue came out as he leaned in towards the cat, who had a “Oh please God, no, help me!” look on his face.

“So yeah, I was at Target and they had this thing that would be perfect – Sean! Don’t lick the cat! – for your living room. It’s so cool…”

I’d spent weeks telling Sean to not lick things, it didn’t occur to me that an outsider might think that was a little weird.

Luckily, it was a Jen friend, so she thought it was hilariously weird. It was her favorite story to tell people for years I think – and that was okay because it was hilarious.

Fast forward fifteen years or so…

I was on the phone with same friend Jen last week. Miriam was cooking dinner, and I went to investigate how it was going, which led to me pausing my conversation with Jen to let Miriam know that I’d rather her follow directions and not experiment with things. Which was more like “Um, according to directions, you’re supposed to do things in THIS order. They’re there for a reason. And why are you cooking while riding a scooter?”

Miriam just looked at me as she stood on Maura’s scooter. “Because I can?”

Jen, who has been on the other end of too many conversations like this, asked “Wait, she’s on a scooter?”

sigh.

yes.

Maura has a three wheeled scooter that she’s decided works best in the house. It’s become a thing with the kids to just scooter about the house. Even one of the teen boys came down the hall on it.

“Really?” I said, eyeing the almost-grown male.

“Why not?” shrugged said male.

But scootering while cooking? That’s where I draw the line. We have standards in this household. Weird, low bar, standards, but standards none-the-less.

And then they do stuff like this - "Look Mom, she's Magenta!'

And then they do stuff like this – “Look Mom, she’s Magenta!’

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