Advertisements
Archive | maura RSS feed for this section

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.

 

 

 

 

Advertisements

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.

 

18198743_10154392266347513_3023969340585547069_n

 

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.

 

Sometimes, even I need a reminder

24 Apr

I am a tolerant woman. I can ignore a lot. A LOT.

But some teen in this house showed Maura YouTube on the Xbox. And now, Maura is going through YouTube, clip by bloody clip, trying to pick out songs from movies. Except she can’t read really, so she goes by movie titles or pictures, press play, decide it’s not what she’s looking for ten seconds in, and stops it to go trolling some more.

Click…click….click…music…click click…music….click…click…

She’s doing this right now.

I’m going a bit mad.

It’s actually way more fun when one of the siblings get on her case. “Maura! Just stick with one thing!” Which of course, she doesn’t.

Good times.

We lost the Blue Pad – aka, a Kindle Fire that she was using – so we can’t just plug her into her own device with headphones.

To add to this fun, she’s gotten into repeating things several times to you. “See? See? See?”

“Yes, I see…I see….YES I SEE!”

Geez Mom, why are you yelling?

<headthunk>

I had this idea that I could just put a tv in her room. But then we’d never see her again, and she’d definitely never sleep. But that’s how desperate it’s all getting.

And then, just now, she turns to me. “See? A party! Woo! Let’s party!”

And I laugh.

Because the girl is just trying to enjoy her music and watch music videos. And she’s navigating YouTube the best she can – just like she navigates life.

There will always be obstacles for Maura. Always. The world isn’t designed for those with disabilities, so those with disabilities have to find a way to make things work. Meanwhile, there are those perfectly abled who get royally put out because OMG they had to park at the far end of the parking lot, and bitch about it. Or bitch about the shortage of unicorn Frappuccino’s. Or bitch about something that isn’t a big deal, and talk about how hard it was.

You know who doesn’t bitch about life being hard?

The girl currently navigating YouTube to find a video with her barely kindergarten level reading skills.

Sheesh, even I could learn from her.

This is one of her favs – thanks to one of the Jennifers who insisted Maura had to have the movie – we’re gonna need the soundtrack now, please and thank you.

%d bloggers like this: