What the ACA Means to Average Americans

Last week I posted something to Facebook about how upsetting it was that the GOP is taking actions to dismantle the ACA. That post ended up in the trending topics on Facebook, and I had to turn it to friends only as a number of strangers and trolls decided to chime in. I was headed out of the house for the Women’s March and couldn’t address the ugliness entering my feed, so I put it on lock down.

I thought I would take the time here on my blog to post in more detail, though, and address some of the rhetoric I’m hearing out there. I can offer some additional insight into the issues since I’ve worked in the healthcare field (to be specific, I worked in the Administration and Finance department dealing with contracts, physician payments, and Board meetings). Others in the healthcare may have a different take, I suppose, but here is mine.

First, a note: There has been a lot of spin about what the Affordable Care Act (a.k.a. Obamacare) is and why people want it. Republicans have lobbied hard against the ACA for years. Many people have forgotten that the original iteration of the ACA was torn apart by Republicans and what we were left with is just a shadow of what President Obama intended–literally, the bare minimum he could get through Congress. There are a lot of things wrong with the ACA, of course, and that is in large part because of the refusal of Republican lawmakers to work with Democrats during that time (and since). Some states were able to develop their own ACA-related programs to address the holes in the law, and some were not. So in many areas around the country, insurance companies have hiked rates because there is little or no consequence to them.

Ewokmama.com: Why we Need the ACA

Logistics of implementation aside, I want to make it clear that my support of the ACA is not about wanting free healthcare for my family. In fact, we don’t have insurance through the ACA programs. We have an employer-sponsored plan because we are lucky enough to be in good health and able to work. The unemployment rate is pretty low at the moment and my husband and I have pretty secure jobs (as secure as any job is these days).

With that said, the tenants of the ACA impact ALL healthcare plans. See this article for more on that.

When I use my family as an example of why we need the ACA, it’s because my family is pretty typical. Our circumstances are subject to change at any time, just as most Americans who don’t have a hoard of cash as a safety net. We are living paycheck to paycheck and have credit card debt and have experienced lay offs in the past. We have a house and cars, but those things could easily be taken from us if we hit hard times–just like so many other Americans.

There are many, many Americans who do not have employer-sponsored plans. Some are unable to work, perhaps due to illness or because they are caregivers. Some are self-employed or work with small companies that do not offer healthcare. Some have lost their jobs–most people I know have experienced a lay off at some point in their lives! The ACA is meant to help all of these people and prevent them from going into catastrophic debt from which they can never recover.

You can easily google “how much does cancer cost” and find out just how financially catastrophic that diagnosis can be.

And then there are those pre-existing conditions clauses. These do directly impact my family. My older son, a cancer survivor, is considered to have a pre-existing condition. That will never go away. He cannot hide it because he will need monitoring for the rest of his life to catch any other issues that cancer treatment causes. I have mild asthma and a history of mental health issues. My younger son has Reactive Airway Disease, which is often a precursor to asthma; he is only two–who knows what else will come up for him.

Prior to the ACA, even employer-sponsored healthcare plans could exclude us from coverage for periods of time. Prior to the ACA, and before I had employer-sponsored healthcare, I was denied private healthcare insurance due to a history of mild asthma and depression. I could not afford to pay for the medications to treat these health issues out of my pocket, so they went untreated.

When people cannot afford to take care of their health, that impacts their ability to work and be fully functioning members of society. Their health problems do not magically go away during that time!

Now let’s talk about hospitals. Did you know that if someone shows up in an Emergency Room, the hospital cannot deny them care even if they can’t pay? Some uninsured patients that show up in ERs are able to qualify for Medicaid (which, I might add, also doesn’t reimburse the hospital 100% for cost of care), but some are not. So many hospitals are taking on the cost of caring for uninsured or “under-insured” patients. If there is a large number of these people who need health services and cannot afford to pay for them, the hospital accrues large amounts of debt. The hospital has to then raise their rates for the rest of us to make up for the gap in operating costs.

And what happens if we refuse to pay those higher hospital bills? Well, in many cases those hospitals get shut down. This was a major issue for the Catholic hospital where I worked in rural northern California. It nearly shut down. Hundreds of people were laid off to keep it operating!

These issues snowball. Rural hospitals and facilities in debt have trouble hiring quality medical staff. The quality of care goes down. More mistakes are made and more lawsuits happen. People die, and costs continue to skyrocket.

This was happening in rural areas all over the country before the ACA. And these rural hospitals are still struggling due to key provisions missing from the ACA.

But if the ACA is repealed, it doesn’t fix any of these problems. We just go back to large numbers of people being uninsured or under-insured!

We need to fix the ACA. We need healthcare reform to hold insurance companies accountable–not a big gaping hole.

Please, call your representatives and demand they either KEEP THE ACA or develop SOME sort of bandaid in the mean time!

Why I Marched on Oakland

On January 21st, I marched in Oakland as part of the Women’s March on Washington. I know there are some out there who don’t understand what marching accomplishes. I don’t always know the answer to that, but sometimes you feel strongly about things going on in the world and you can’t sit there anymore and do nothing. Sometimes, marching just feels right.

It was a diverse group that marched in Oakland. It wasn’t only women; there were people of every color, size, shape, ability, gender, sexual orientation, and flavor. The reasons why participants marched were many and varied.

Jack and me at the march in Oakland. Photo © Rhea Avalos.

Jack and me at the march in Oakland. Photo © Rhea Avalos.

Here are the many reasons that I marched (with my son Jack) yesterday:

  • To show that I will not be a silent victim of Trump’s fascist agenda and toxicity.
  • Because every person who marches builds up a critical mass that results in 2.5 million people, which shows that we are not a small minority of people who are concerned with the dangers of a Trump administration.
  • To show support to every person who will be targeted and harmed by Trump’s agenda and toxic atmosphere for simply trying to live their life:
    • people of color
    • LGBTQIA people
    • women
    • immigrants
    • those in need of affordable healthcare and protections against pre-existing conditions clauses
    • children who deserve to go to school without worrying about gun violence
  • To feel solidarity with my fellow citizens who also want to build a better America–an America that is constantly improving and not trying to return to the past.
  • To be part of a movement so big that it cannot be ignored.
  • To show my children what freedom means.

I will keep marching because it means something to me and reminds me what it means to be an American.

The Terrible, Horrible, No Good, Very Bad Sleeper

I have no idea what this kid needs from us. I am sure that we’re doing everything wrong, though.

It feels like we have tried everything to get him to have good sleep habits and yet…nearly every night involves screaming and kicking and throwing things and hours of time. Frustration and anger and tears and…youtube videos.

Yes…as a last resort, we are now regularly putting him to bed with youtube videos.

That is the wrong thing, I know. But what is the right thing for this child? Because we have tried everyfuckingthing and this seems to be the only thing that ends with him sleeping without us completely losing our minds in the process!

Even so, bedtime is a nightmare. We feel powerless. I personally get so dejected and angry when I finally leave the room (usually some time after 10pm). Hence, this blog post…

David takes on bedtime most nights now because it has taken a serious toll on my mental health. He fares better than I do, but he can’t do it every night. It wears a person down.

I want a toddler who sleeps through the night.

Still true.

It doesn’t end there, either. Dez sleeps for a couple of hours before waking and he will throw a gigantic hour+ long screaming fit if I don’t tend to him in the middle of the night. Sometimes we go the screaming route with Dave going in there while I try to ignore it and stay in bed and get some sleep through the noise. Other times, I take one for the team and head in there. We try to take turns because once we go in, we usually do not emerge again until morning.

The parent who goes in there gets a toddler velcro treatment. With me that means Dez scoots his face right up to mine, breathes his hot toddler breath on me, and locks his hands around my head. He falls asleep peacefully while I try to breathe air that isn’t coming out of his mouth and hope I can get back to sleep while locked in his embrace. All night long it’s a game of “shove the toddler over to get some space and a few independent winks” and “oh look here he is right in my face again.”

I probably don’t need to tell you that I don’t sleep well like this. I am pretty sure Dez is the only one on the planet who does!

And I haaaaaate it.

I keep trying to come at this sleep thing from different angles, try to analyze the situation and read tips and…nothing. Nothing helps. It looks like we will just have to get through it. Sigh.

This is not a request for sleep advice (and good lord, please do not email me trying to sell me something!), just an exasperated rant from a very tired mom.

Please let this child figure this sleep thing out. 2+ years of shitty sleep cannot be good for any of us.

Living That Normal Life

For the first time in nearly five years, Jack’s latest lab results were normal! While he finished cancer treatment over a year and a half ago, his body has taken its sweet time showing us that it could function normally. The last hold out on the labs was his ferritin level, which stubbornly refused to come up even with liquid iron supplementation. Finally, though, he’s off of supplements and his ferritin is normal!

Health aside, Jack is mostly living a normal life as a regular 5th grader. He’s been improving steadily in school thanks to a teacher that is pretty laid back and increased time in the resource room for math help. He even likes math sometimes!

Oh, and he can tell time now. That finally clicked when we got him a smart watch. He played around with the time display a lot and I think that helped him understand how time works.

Who knows, the increased ferritin level could also be a factor. (Apparently low ferritin can impede brain functioning.)

Things have improved considerably for all things Jack-related. No more fits over homework, very few missed days at school, and mood stability. In our darkest cancer days, we never thought we would get here. It’s pretty incredible!

At the end of January, Jack will reach 5 years disease-free. He survived.

We all survived.

Brothers

Jack and Dez on Thanksgiving.

Happy Second Birthday To My Second-Born!

It’s been two whole years since this little spitfire shot into our world.

newborn

He was so chill and easy in the beginning, but we have learned that those first few months of peace were just the calm before the storm.

Before Hurricane Dezaroo hit.

And now he is TWO! This quote illustrates this stage of life perfectly, I think:

“It’s saying no. That’s your first hint that something’s alive. It says no. That’s how you know a baby is starting to turn into a person. They run around saying no all day, throwing their aliveness at everything to see what it’ll stick to. You can’t say no if you don’t have desires and opinions and wants of your own. You wouldn’t even want to. No is the heart of thinking.”
― Catherynne M. Valente, The Girl Who Soared Over Fairyland and Cut the Moon in Two

He says no. A lot. Mostly, “NOOO DOGGYYYYYY!!” He thinks Lambert is trying to steal his food, which is pretty funny considering he throws said food to Lambert when he’s finished eating it himself.

Sigh.

He has already taught me a lot in his two years. Mostly I have learned that everything I thought I knew from parenting Jack would be useless while parenting Dez. My two kids could not be more different! Although, they both have loads of personality, so I guess they have that in common.

Dez is active and loud and tests boundaries. He already struggles with major FOMO (fear of missing out) and fights sleep more than any other human being I know. He climbs and jumps and dances and runs and throws balls – he is always moving. He has a mean arm on him, too! Just the other day I found a golf ball in the garbage disposal.

If he doesn’t play ALL of the sports as he grows, I will be shocked!

It seems like the time has gone so fast. I barely remember his infancy. I miss that brief time when I could set him down and he couldn’t go anywhere! He is definitely now more of a little boy than a baby, and so very independent.

We weaned at the end of June and he did very well. He learned to sleep through the night at the same time (hallelujah! I finally got some sleep! Huge props to David for parenting solo for a week, which allowed this to happen!). A few weeks later we tried to separate our bed from the crib but…Dez climbed right over the side of the crib. So he was unceremoniously moved into his own (safe)room.

toddler room

Little toddler, big room!

The transition to his big boy room has not been easy, but it’s been a couple weeks now and he is adjusting. And so are we; we are figuring out that most things with Dez are just going to happen the hard way!

I’m sure we’ll get used to it, right?

Or, at least, it will all be worth it just to have this amazing, vibrant little boy in our life!

toddler on a swing

Happiest of birthdays, Desmond. Mama loves you like crazy!

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Double Digits

Tomorrow my first born son is ten years old. Double digits.

I’ve been trying to avoid thinking about this date as it loomed ever closer. The thought of Jack being TEN caused panic to bubble up in my chest and claw at my throat. My eyes would burn with tears and I had to hold back from clutching him tightly to me.

I didn’t don’t feel ready for this.

But the time is here nonetheless.

Jack almost 10

Looking like a teen!

One would think that after ten years as a parent I would feel more ready to let Jack grow up and move into the next stage of his life. But I haven’t been spending my time over the last decade preparing for this moment–not at all. After his cancer diagnosis, I focused on preserving his childhood as much as possible. And before that I spent a lot of time working to figure out how to be the mom he needed and haphazardly uncovering my own issues along the way.

I feel as if I’ve been sidetracked so many times. I’m not sure I’m much closer to knowing what I’m doing than I was on the day he was born. In fact, I feel that only now am I getting to the point where I can see the breadth of what I don’t know about raising a person to be a self-actualized adult. And I guess while focusing on all of that I simply forgot to prepare myself for the whole growing up thing.

But Jack will keep on growing even if I waste time being hung up on worries over the future.

Jack is an incredible human being. If I stop thinking about my own experience being his mother for even a second, I know that he will navigate the coming years in his own way and craft them into an adventure as he goes. That same creativity and empathy that seem to emphasize his youth right now will also help steer him on his path to becoming an amazing man.

I really just need to stand back and let it happen because, whether I’m ready or not, Jack is growing up.

Crystal and Jack in Bath

On an adventure together in England.

My Two Boys

I’m not sure that I say this enough, but I have two amazing kids. They are both sweet and adorable and they make me laugh constantly with their bizarre shenanigans. They take my breath away on a regular basis.

How? How did I get so lucky?

It’s incredible to me how different from one another they are, though. I can’t help but marvel at how two kids that have been parented mostly the same can be so very different. (Nature, I guess!)

Jack, my first born, is creative, funny, and sensitive…he has always had a carefulness about him that makes him seem older and wiser than his years. He has a unique way of looking at the world that influences everything he does – and really, everyone around him.

He worries about the future…about growing up and his childhood being gone before he is ready. I find it a bit strange considering the fact that his life thus far has not been exactly carefree, but it is one of the reasons why I am endlessly curious to see what his future holds and how he navigates this life.

Jack and dragon drawing

Showing off his dragon drawing at the oncology office.

Dez, on the other hand, is fearless and determined, albeit goofy as heck. He is not even two yet but this kid is full of energy and life. He never stops moving and is constantly keeping us on our toes. He reminds me of that old game on ancient cell phones called Snake. As the snake eats he keeps growing and getting bigger than he (or anyone else) can handle. But no matter how big he is or how many things he runs into, he gets back up and redirects himself around the obstacles.

His drive is completely foreign to me but already I admire him (all while knowing I will go fully gray by the time he is a teenager).

Dez taking a walk.

Dez taking a walk; he loves going outside.

The boys love each other so much. When Jack comes home from his dad’s, Dez is so happy he breaks into peels of laughter. He just can’t contain himself. They play together often – sword fighting with pool noodles or tickling one another or chasing each other around furniture. Our house is loud and boisterous.

I wanted this, dreamed about it for years, yearned for a house full of children laughing. I have my dream life!

I don’t always enjoy it, though. It’s not so easy to remember to do that when I’m running around preparing various meals, running to doctor and dental appointments, struggling over homework or diaper changes, constantly picking up after a toddler who doesn’t stop moving, the lack of sleep… It’s hectic and it’s easy to get swept away in the whirlwind of life with young children.

But I cherish these boys and my little family with every fiber of my being. I hope they know it.

The Terrible Toddler

Life with a toddler is full of surprises. Also, exhaustion.

A few days before Christmas (2015), at 15 months old, Dez took a few unassisted steps. He didn’t walk again until late February. At that point he spent about half his time lurching like a miniature Frankenstein’s monster and the other half of the time he crawled (or walked on his knees) at such a quick pace that he wore holes through the knees of his pants.

No joke!

This kid does things at his own weird, erratic pace.

Toddler loves Hendrix

Check out those baby blues!

He is now almost 20 months old and walking full time. He gets into EVERYTHING. He climbs onto the dining room chairs, tries to climb onto the table, opens the front door if we forget to lock it behind us, and attempts to throw all kinds of things into the toilet.

He is so active! We are so tired! Jack did not prepare us for this.

Desmond’s favorite past times are throwing balls, riding on his plastic tractor, eating constantly, removing his socks and making us put them back onto his feet, bossing the dog around, and endangering himself in some way.

Stairs are fun for toddlers.

Stairs are fun for toddlers. Less fun for parents.

He has eight teeth, and two molars are sloooooowly making an appearance.

Sleep is hard to come by in this house. I don’t believe that he’s slept through the night yet. (Yeah, you read that right – 20 months and has likely never slept through the night! Yes, I’m a little dead inside.) Since we co-sleep it’s mostly all a blur… He’s also still incredibly difficult to put to bed. We have started to use a sound machine at night in hopes of creating a more inviting sleep environment. Fingers crossed that it works and we start having easier bedtimes. We are pretty sick of tag-teaming to deal with hour-long tantrums at bedtime.

He’s also been fighting diaper changes for over a year now! Case in point:

Toddler tantrum

Diaper changes are the worst!

BUT! Just recently we discovered a show on Amazon Prime called Tumble Leaf.

TUMBLE LEAF IS MAGIC!

We turn Tumble Leaf on and Dez throws his arms straight up in the air and yells YAAAAAAY! He then lays down and stays still for a diaper change. It’s amazing! In fact, David told me that finding that show is my greatest life achievement. I think that illustrates just how awful the diaper change fights have been.

While Jack was speaking in sentences around this age, Dez has maybe 10 words (in English):

mama
daw (dog)
Jah (Jack)
tok (sock)
suu (shoe)
ball
hi
byebye
nigh-nigh
yay

Apparently, though, he knows some Cantonese, the first language of his daycare provider. It took us a while to catch on – he was telling us for months that he was hungry (“mum mum” in Cantonese means “want to eat”) and we had no idea. Chances are he can say a lot more than we understand.

Dez is cute and sweet when he is not driving us nuts. He loves to snuggle and nurse, sits on our laps to read a book or watch a show, and does goofy things like wearing his sunglasses on his forehead.

Toddler in sunglasses

Too cool to wear sunglasses properly.

Still, we wish he would sleep more.

Progress in Getting a Better IEP

After many years of back-and-forth with Jack’s school, we have finally gotten an IEP that I think we are all happy with!

For the first time since we started meeting with the educational team at the school back in 2013, they didn’t fight us on where Jack is academically. Everyone agreed that he is demonstrating the long-term effects of his cancer treatment. Everyone agreed that what we’ve been doing so far has not helped. Finally, the school accepted that the holes in Jack’s learning would not just magically fill up again now that chemo is done. They have conceded that Jack has a huge gap between intellectual ability and academic achievement in math due to processing problems (i.e. dyscalculia), memory, and attention issues.

fear of math

Does not compute… Photo © Jimmie, Creative Commons usage.

I can’t tell you what a relief it was to walk out of that IEP meeting last week and have plans in place – not just HOPE but plans.

Jack has four new goals written into his IEP, including learning to tell time*, learning to count money, practice basic math facts so that he can get 80% accuracy, and fraction learning in the resource room prior to learning it in the classroom. Accommodations will include shorter assignments, untimed classwork, and the teacher will make sure he understands instructions/repeats them back before left to do the assignments.

Jack previously had time one day per week in the Resource Room (which amounted to 75 minutes per month) along with two other students and no individual help. Now he’ll spend time three days per week in the Resource Room and one of those will be solo with the resource teacher!

It feels like the future is looking brighter! Even if these things don’t work, we’ll know more about whether Jack can learn certain things if taught in a different way or just…not at all.


* Jack has no concept of time – not hour of the day, not day of the week, etc. He can’t tell how long something takes or how much time has passed – whether it is nearing bedtime, whether it’s late or early in the day, or what day tomorrow is. He floats along and has to have everyone around him tell him what to do next. This makes time management impossible! Part of the problem is that he can’t hold onto information about sequences longer than maybe two steps (so even if he does know that today is Monday and tomorrow is Tuesday, he has no clue where those days fall in the sequence of the seven days of the week). Another part of the problem is that he has trouble with assigned meaning of things – i.e. a quarter is worth 25 cents because someone long ago decided that was the case; the value isn’t inherent to circular pieces of metal of that size. He can’t wrap his brain around that. It’s like it’s another language that he can’t comprehend – the language of sequences and numerical meaning.

It’s A Hard-Knock Life (For Us Parents)

I have a migraine right now and my hip is fucking killing me. I would love to go to bed – I don’t even care that it’s not even 9pm on a Friday – but I can’t go to bed because Dez is trying to go to sleep in said bed and my presence is not conducive to him falling asleep.

This is parenthood. Sleep is like vacation to me – better, even, because it requires much less planning (and yet is no less elusive at times).

David and I are involved in a tag team effort at bedtime these days. I nurse Dez, then David steps in when Dez decides maybe he doesn’t want to go to sleep and tries to make a break for it. Daddy means business, though, and when he walks in the room, Dez knows his attempts at delaying bedtime are doomed.

Being the parent of a toddler is hard. I had forgotten just how hard. I guess that’s what happens when you wait eight years to have a second child! This little person who is most definitely his own little person and yet can’t do a damned thing for himself yet (except stuff too many yogurt melts in his mouth at one time) can make you question your choices in life, your sanity, and your self-worth. I had forgotten, but now I remember: I do not like the toddler years, Sam-I-Am.

Frankly, the pre-teen years aren’t seeming to be much better at this point. I’ve been meaning to write about all kinds of Jack-related things but it’s a big ball of complexity that I barely want to think about. The shortish version is this – he has been diagnosed with ADHD, dyscalculia (a math learning disability), and anxiety brought on by medical-related experiences. And in a year he goes back for more testing because the neuropsychologist isn’t sure she was able to get him all figured out.

At nearly the same time that we got the diagnoses and the rest of the results of the neuropsych testing, things at school got particularly bad. Jack and his teacher are at complete odds. It’s partly Jack’s fault and partly the teacher’s fault, and both of them are less than flexible people. We are working on Jack’s behavior, though I think we (and the teacher!) will just have to accept that Jack will have some bad days.

Therapy has been successful, though, so that’s a plus. Yay! I’ll take all the victories I can get.

Back to Dez…he’s a weird little fellow. He’s no longer that magical unicorn baby. He is vocal and can be clingy and so very quirky. He took his first unassisted steps a few days before Christmas, and then hasn’t walked since. He just goes around walking on his knees (which are now quite callused). He doesn’t say much, either. He has some words but very few that are clear. That doesn’t stop him from chatting, though. He talks a LOT – just not in English.

He also doesn’t sleep for shit. He is a terrible, no good, very bad sleeper. I think he must have gotten it from David because Jack and I both excel at sleeping!

He is a great eater, though. He’s got Jack beat on that!

So clearly we’re living a hectic existence right now. I know it won’t last forever and one day I will look back and miss the moments where Jack helps his brother walk around the living room or Dez snuggles up to me for midnight nursing sessions…but right now I am dreaming of peace and quiet.

Fewer headaches and a massage would be lovely, too.