So many thoughts....

credit

“When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.” 
~ Fred Rogers ~

source

Saw the drowning pic this morning. Oh my, I could go so many places with this pic.

My oh my, how often do we get told we are being prayed for or being thought of yet so often we feel so alone...... How often do we see on social media (And we say it too!) that we are thinking of and or praying for someone? Do we honestly do it or do we just do our "social duty" with it? We say it, and move on? How often do we tell someone to their face we are praying for them? Do we really though? I wrote this post for me too because I needed this reminder as well.

How did that work for Moses? Think he would have just said, "I'll pray for the Red Sea to part and deal with it whenever it finally does." and not acted? Nope! That's not how it worked. What about Joshua and the Jordan river? "I'll just wait for the waters to recede and THEN try crossing." Nope!

They stepped out!
They did something!

Now, okay, next step: Let's really look at that pic. One guy is drowning and the other one is just standing there talking, does that help the one drowning? Clearly not! Would we help? We would all say "YES" right?

Of course! Now you are probably thinking I'm nuts now. (If you hadn't already lol)

So then what about in other situations? Now I'm not saying stick your nose in everything or everyone. That's not the intent here. Yet what CAN we do? What do we feel LED to do?

What about when you witness a car wreck? "Oh I'm sorry you are injured, I'll just pray for you" and walk away. Same concept going on here. If we witnessed a wreck, we would first call 911 right? THEN check on the injured, help keep traffic out of the way or something till at least the police got there right? The law says we can't leave the scene right?

Well then....

What about the family that's in the waiting room with you who you can tell is having a really bad day? What about the family who you overheard say to their children, "I'm sorry I don't have enough money for food since I had to pay the electric bill." Or the man sobbing while on the phone because he just heard from his wife that their child has cancer?

Would you figure, "That's not my business" and walk away or would you offer to do or say something?

I remember still my son's first surgery and the morning after I was on the way to the PICU when I met a family needing help outside. I saw a couple bringing out a large wagon of stuff but no child..... I feared the worst. Shortly after I saw a grandmother carrying a bouncy seat crying. As we approached her truck, I could tell she needed help. I was running a bit behind for when I wanted to be back in the PICU by but I knew I needed to be here.

I went to her and asked how I could help. She was sobbing. I held the truck door so it wouldn't hit the car beside it as she put the bouncy in. I knew in my heart she was with the couple that was bringing out the loaded wagon. I found out they were the aunt and uncle bringing stuff and the woman I helped was indeed the grandmother. Her granddaughter had just died a few hours before. I can't remember the name of the condition but it was a weak trachea and it collapsed again and this time they couldn't get it to open back up. The poor child suffocated. As she told me this out in the parking lot, I held her as she sobbed. I was wiping my eyes as well. Tears for a complete stranger. Soon after I walked in with her and I met the mother. I gave her huge hugs as well and told her as well that I would pray for the family. I went in to see my son. Very soon after I felt God tugging at me saying, "Why didn't you pray for them right there with them?" So, I made an excuse to go back out to the waiting room of the ICU. The whole family was there then. Most of them either sobbing or red eyes where they had just exhausted tears. I went to the grandmother and asked her if I could pray for all of them. I stepped out of my comfort zone and prayed out loud for all of them. They all thanked me, mostly by nodding and smiles. The next time I stepped out of the ICU, they were all gone.

I went back into my son's room and held him as much as I could and told him I loved him as I grieved for the family who had spent the last three months in that same ICU floor.

Now I have had other times where I probably should have said or done something over the years. Yet I didn't.... That morning on the way to ICU though taught me to be more aware, even in the middle of our storms.


So let's take that same pic:




We find a family struggling. We often think, "Not my circus, not my monkeys" or "That's not my business" or "They are just trying to leech off of people" or "Well I'm struggling too so they can just suck it up and deal with life like everyone else." "They brought these medical issues on themselves so they can just deal with it." "They chose these defective, jacked up kids so they can suck it up."

Do you know how much someone may be drowning in their life? When you think like that, no matter how well you know someone, do you see that they may be swimming well or are drowning?

Do you ask them, "What can I do to help you?" "How can I pray for you?" "I can watch the kids for you so you and your spouse(whatever) can go on a date." "I'm sorry you are dealing with ____" "Need some help with ___" "If you don't have enough for groceries, we can go to the store and I can get you some food." And so much more examples can be used......

Which way do you hope people are to you the next time you are in a storm? Or a bad season in life?

Do you dish out what you want served to you?

Do you think the family I met in the PICU waiting room would have been helped had I not done what I did? Do you think their day would have been worse or better by what I did? As if the day wasn't hard enough..... Yet to start with, all I saw was a woman trying to put stuff in a car. I knew nothing of their story to start with. At first it would have looked like the family was going home that day and all of that stuff was being loaded up to go home then the child would be discharged and all good. Nope.... I stepped out on faith either way and helped. Through my help and compassion, I learned their story.


Now, I'm sure almost everyone knows by now what happened in Vegas..... I took this pic last night on my way to community band.

All over the news they have plastered that psycho's face BUT they have also told of the stories where people acted as heroes. Risking themselves to help others. Several who died or were severely injured using themselves as a shield for whom they were protecting under them. Did they say "Well that person is ___ so I won't do anything for them" stuff?

NO!

Nothing mattered in that moment. People were out there helping each other, knowing the risk that the psycho shooter would wound or kill them too, yet instead of fleeing and hoping for the best, they stayed and helped. Even those that weren't there are going out and helping. GMA reported this morning that a GoFundMe had raised over a million in less then a day. Now it's over four million. Just over 59k people as of this post have donated. A lot showed up to do blood donations. People are going to check on the victims, to help, to pray.... And so much more...

I think the lesson here about this tragedy is several things. No I'm not talking about gun control or all of that. Think what you want on that. Here's what I think first and foremost on this:

1) Let's go back to all of us treating each other like we are human and deserve care, compassion, mercy and to be treated equal. I don't care what your religion, beliefs, financial status, and all of that is.

2) Learn to step out and ask others how you can help them, or just step in and do something if you see someone hurting and struggling. Don't put a price or stipulation on that. Just do it.

3) Learn to be human again..... Learn to be like Jesus taught how to treat others, no matter what your religious views are. Make this world a better place.....

4) Step out and report if you have suspicion of someone about to do something they shouldn't. A criminal is going to find a way to break the law regardless of how strict we make laws. Best thing we can do is report suspicious behavior to the proper authorities and hope for the best....


To me honestly, it's not about the guns, the alcohol, the drugs, the whatever. Anything can be used as a weapon to harm people. Cain killed Abel with a rock. What is it then? It's a heart problem. Let's work together to help each other heal wounds instead of playing blame games or worse, getting more cold toward everyone around us.


~ Special Momma ~

Unknownville

I'm also working on another post, maybe the last one about our stuff related to Dallas for a bit but it had me thinking about the roads we walk.

Often on my drives to and from appointments, mainly the out of county ones, my mind gets to thinking about a lot..... The above pic was taken on my way home taking a shorter way from Little Rock. It was the evening from my son's MRI. So much trepidation, fears, worries, what if's and more were going through my head the way home. Even as my son and I were copying each other and being silly, my brain just couldn't get into the moment. Though when I stopped long enough to get this pic, after I kept going, I had an epiphany. Sounds silly but it made me think of those times where you cross paths with someone, often just once but you cross paths, never to be remembered or thought of again. Yet what did you do or not do for that person who you crossed paths with?

Other people we cross paths over and over and over again.

credit

Yet how often do we just stand there like this dude and wonder what is next? What path should we take? Who should we call, visit or text? Who do we think cares enough to hear from us or even hear what's been going on in life, good or bad?

I think it's not that people INTEND to always make promises then break them, they let life keep them too busy to the point where they think of someone they promised to be there for or mentor to or help and then they forget. They go to bed THEN remember, if then. Then they tell themselves they will shoot a quick text in the morning then forget that too. Yet this is what leaves people hurt, alone and isolated. Even in the Christian church world. Even people you trusted. Those promised they would never give up, do...... Intentional or not, they do.

Or let's look at that pic in another way. Our journey..... How often do we come across times in our lives like this where we are forced to choose a path and hope to God it takes us where we wish it would, or even feel like we are forced to take a certain way?

credit

Or how often do we take a path just to have it closed on us, blocked off, flooded? Destroyed?

credit

That's this journey....

All of it.....

People I have met and know I'll never see again. People I got to see many times and now will never see again due to the insurance hurricane. Destroyed.....

People who move away, or you move away.

People who promised to be there for you and weren't.

People who said they loved you and don't.

People who you thought "got it" yet instead of that, they used it against you.

The doctor gives you a new diagnosis, or that a diagnosis is getting worse. Welcome to Unknownville.... Even if you think you will get a textbook case, sometimes that gets lost too and you have to navigate without it because you know you or your child are NOT textbook cases. Welcome to my son.

The comments from people, even Christians that were intended to either silence you or hurt you. Even sometimes those that weren't intended that way, do.....

The texts, calls and or IM's you send to people who you thought cared or were your friend and you are ignored, forgotten..... They say they will get back with you and never do. You always initiate contact, rarely if ever them.... Even those who you least expected to be like this....

People you go to church with, work with, even neighbors that live right next to you...

They just disappear..... Sometimes with warning, sometimes with none.... Sometimes you still see them, even often, they just ignore you and other times they are gone forever.

via GIPHY

Often they never come back or if they do, many of them it's because they want something then as soon as they get it, they leave again......

Yet I read the following the other day.
It really fit.....

What I hate admitting about being a special needs mom
By: Whitney Barthel


Being the mother of a child who requires special attention is a very private matter. Most people take parents of special needs children for their face value, never really thinking about the hard truths they face from day to day.

As Daniel gets older his diagnosis becomes more apparent…and at times more painful. Daniel was a typical baby; he did the typical baby things. At the start of life everything is pretty much an even playing field.

As time went on we saw his development steadily slow. First he was weeks behind children his age, then a month or two, and now the inevitable year (gulp). As I struggle with his progress, or at times the lack thereof, I feel the need to reach out to other parents, with or without children like mine, in hopes to connect or help others understand.

Here are a few of my hard truths:

1. Avoidance is key: When Daniel was born I would relish the fact that he was “right on track” for a child his age. Now it is a different matter. I avoid development charts and articles at all costs. Theodore Roosevelt said, “Comparison is the thief of joy.” I find this to be true.

2. I lie: There. I said it. Not big lies, but tiny little ones. When people ask me if Daniel is eating solids yet or if he is saying anything new, I try to come up with something, anything to get them to not utter the words “I’m so sorry.” I don’t know about other special needs parents but those words are like kryptonite. I hate them. Please do not feel sorry for me.

3. I’m jealous: This is hard for me. I am not naturally a jealous person. I see children that were born the same time as Dan and it almost kills me that they are potty trained, can talk full sentences, will color quietly for hours on end, and can say elephant in three languages…or whatever kids are doing at their age.

4. A constant failure: There is not a day that I lay down my head thinking I did enough to help Dan succeed in this world. I am always worrying that I’m not doing enough to help him “be all that he can be.” Maybe there’s a therapist we should be seeing? Did I read enough with him today? Maybe we should have worked harder or longer on our animal sounds? The list is endless.

5. Feeling left out: There are times when social media and networking sucks. I loathe the mornings I log in to Facebook only to find new pictures of some awesome birthday party that we weren’t invited to. This might be the most painful thing for me. I pray our exclusion from fun outings and parties is because the moms in our community think I’m a huge “B” and not because they don’t want to invite Dan.

6. I am proud: Being a mom of “typical” and “special” children gives me the authority to say what I am about to. Having a child that has to work one hundred times harder to achieve something that comes easily to another is at times frustrating. That being said, when special children achieve something remarkable (like talking or walking), there is no greater joy in THE WORLD. There are many times I am so proud and my heart is so full that I cry- a lot.

Often my tears aren't because of the joys, which there are joys for sure, often my tears are for the disasters, the storms, the damage, the crash onto the island of Unknownville for who knows how long despite trying to just navigate the Holland I did know since I let go of Italy many years ago, The many times I have crashed onto the multiple islands called Unknownville..... The long "nights" where even sometimes the stars are dimmer than normal, sometimes the moon is nowhere to be seen. The times of deafening silence from the world and other times of "screaming" criticism and judgment.... Some of the emotions that have ran rampant often but especially since August 11th....

The anger for the injustice my children face when the medical world or anyone else for that matter would rather spit in their face than get them what they truly need or deserve. The anger for those who would rather assume I'm a lazy fat ass mom who does nothing during the day and leech off the government when in fact, many of them would never survive being me. They wouldn't have even survived what I did by the time I was 18 let alone now! The anger for the third time in three months I'm having to tell a new insurance case manager our story because the one before them is no longer on our case for whatever BS excuse reason they can muster up. The anger because I have to rebuild everything our medical journey stood on, which was Dallas. The anger because fat cat bureaucrats have more power over everything than anyone else does, no matter how much we fight it.

The anger mixed with sadness blends in when I see the posts of the birthday parties of moms I'm friends with, who I know their girls are friends with mine yet mine isn't invited to the parties that those same moms are posting about and much more things in the social world.... When my child is in tears because of our loss of Dallas, (Cried twice since she learned of it. Third time at school the other day.) More headaches, more unknowns, more wars with trying to get schoolwork done and she's frustrated and so are we and more....

What I fear is the future my kids face in the medical world that is quickly getting worse and worse and more and more expensive on all sides, yet the care and compassion from not just the medical world but the world as a whole is rapidly dwindling. As much as I someday want grandkids, I truly wonder what kind of world will be here when my children are my age...

What kind of world will we be in then? How cold and cruel and heartless will it be? I pray it isn't but we are on the highway to it already...... When will we find an exit to go back to where we should be? I pray Jesus comes soon because I believe He will be the only saving grace from it..... Though watching The Good Doctor the other night gave me some hope that MAYBE despite all of the cruelness and harshness Shaun was facing, even in fellow physicians around him, that is in the world around us, those with special needs are finally being seen as worthy and seen for the shining gems they really are. I pray my children and even someday their children will be seen that way too....

Tonight is Celebrate Recovery. I look forward to it because it's one of the few places that I can say what is going on without fear of condemnation.....

The question for small groups tonight will be this: How has pride stopped you from asking for and getting help to overcome your hurts, habits and hang-ups?

For me I think it is that:
1) When I have asked for help, I don't get it, I'm put down, I'm criticized, I'm judged and often pending on the type of help, it's not done the way I think it should so I just do it myself.
2) I don't want to be seen as "weak" and asking for help, no matter the type to me is "weakness"
3) I figure I'm just going to be forgotten about anyway so why bother?
4) Finding anyone who is willing to hear my story, hear where I am in the journey, understand where I am and WANT to know anything is slim to none...
5) Because of all the above, I quit asking. I quit checking in on those who never have me. I quit reaching out just to get my hand chopped off. I'm tired of liars, intentional or not.... If you want to be my friend then act like it, not just when it's good for you. If you want to mentor me then by all means do but don't quit when it's convenient and or I'm in a storm. Loyalty means nothing these days.....

Perhaps in all of that, I have let pride get in the way that I don't want wounded again, yet who does? Yet I suppose in taking that chance that I won't be wounded, I have to chance those that will too, which I have seen are most.

There are many things I am powerless with and often not having that control drives me nuts.... And I know I gotta deal with that... The acrostic for POWERLESS is:

Pride
Only If's
Worry
Escape
Resentment
Loneliness
Emptiness
Selfishness
Separation

I don't deal with all of that but I often deal with much of that..... The storms only bring it out more. Even when I see the rainbow, instead of focusing on that, I focus on the devastation of what is left after the storm, The ruins and how to clean up.... Which I have done with Dallas as a prime example..... Fear is my culprit of that.

This is where I will leave off and have another post on this hopefully by early next week... I just gotta remember to stay focused on God and not the storm.....

~ Special Momma ~

Health Care (Or lack of....)

Well, this post will be similar to my post Medicaid but somewhat different maybe. We'll see how this comes out. Please read it all.... Don't think this will affect you? You might want to think that again....

Politicians want nothing to do with reeling in those costs, they either want to make us "Medicare for all" or cut off anyone in need of services entirely. No middle....

There is a new healthcare bill in the works. I wrote this to our senators this week: "I have two young children with medical needs that require Medicaid as secondary insurance. Primary does not cover nearly enough, especially in therapies and hearing aids my children need to thrive. Without Medicaid, my children would suffer greatly, if not die.... Please do not cut my children and so many more children out there who rely on Medicaid just to live. Please look at how children use Medicaid before cutting them off in the name of lowering taxes and costs. Listen to the CBO at how much costs will go UP with this Graham-Cassidy plan. Pro-life means being pro-life at all stages. Be pro life for the children who need compassion, not condemnation."

After I wrote that and sent it, I found out they aren't even waiting on the CBO estimates and I also saw this plea from Jimmy Kimmel who also has a son with a heart condition.

Now overall a lot of the cuts planned with this bill are cuts that was also mentioned in my Medicaid post but this is beyond that. If it passes, it will go back to pre ACA but worse. Preexisting protections are gone, lifetime caps are back AND according to many estimates, premiums will STILL skyrocket. Yet they say that insurance costs went up BECAUSE of the ACA?

I have always had a saying that I remember my grandpa saying a few times. "What is the difference between a politician and fertilizer? None because they are all s**t" (I substitute the S word....) So, before I get political, I think the whole position on this is wrong on both sides. They are too invested and bought by companies and rich people to have any common sense. Republicans AND Democrats alike... So here's what I think needs done:

Neither way is good right now. This bill as it is written though would have also cut out ALL protections for those with preexisting conditions, lifetime caps back on insurance, deep cuts to Medicaid for the disabled and elderly and also put caps on families for Medicaid likely resulting in less quality of care if not lack of therefore children and the elderly would suffer bad..... Insurance had a lot of problems before ACA. ACA had some good ideas, bad ideas and all of it pathetic implementation. What the GOP has planned takes us pre ACA and worse....

It's pretty bad when you have so many health organizations AGAINST a bill that was supposed to help with the issues the ACA brought. Yet doing anything BUT.

Proof here and here and here

Healthcare as a whole needs overhauled where billions in net profits (after bills are paid, employee checks, benefits, marketing, research, etc.) profits is taken OUT and the compassion and care of humans is back IN where it should be to start with.


Let's talk about how much insurance companies charge, cover how much pharmaceuticals cost, how much hospitals charge for everything, the cost of healthcare in general. Can we do something about those skyrocketing costs for consumers? Bet that would help bring down costs for everyone too.  When a MRI costs 15k that's a but much. (Yes, that is the average cost for an MRI for my son.) When an ER visit that they just tell you to go home and take Lortab after a car wreck yet charge your insurance thousands for one x-ray picture and seeing the doc is nuts. When you see an EOB and learn that a bag of saline was charged hundreds of dollars yet only costs a dollar to make is insanity. Shall I go on? Over a grand by the way to remove a pea from my son's nose with medical pliers and him awake once from a walk-in clinic. A surgery with a short hospital stay for a patient should NOT put that family in debt for many years to come with their credit at 0 because they can't pay that money no matter what their income is. An MRI for my son should not cost around 15k just for the scan let alone any other services! My son's MRI on September 11th (JUST the scan, NO other services, not counting the sedation or the reading of the MRI either) was billed at just over 14k. The insurance company we now have paid out almost 9600 of that. Now, that math tells me that if not for Medicaid as secondary, we would be paying just over 4400. JUST for the MRI alone. Now the reading for it, insurance was charged close to 1200, and insurance paid just over 340. Yeah. Kinda nuts when an MRI scan by itself costs about four times as much as an overnight sleep study.....

By the way, deductibles carried over from when we had BCBS, which were well met for my son by the time this new insurance picked up. So this would be what we would be paying even after everything has been met.

Now you make sense of all of that. Yeah, I'm all for companies making profit, Profit has to be made to keep the bills and paychecks going. I'm for capitalism. I'm NOT for greedy capitalism that's crony.

Let's use more examples. Outpatient procedures depending on the type can cost like 23k and 44k according to what I have been told by multiple people. Imagine had those been inpatient! Now there are outpatient procedures that are less than that but I can tell you back in 2013 when I had to have a D&C for a missed miscarriage insurance was charged several thousand for it alone, not for anything else related to it.......

That's what is being charged to insurance, let alone what these people pay upfront and even after it's all said and done...

What I think? Get healthcare costs under control through what big pharma, medical supplies and hospitals/clinics can charge THEN get health insurance companies to treat people humanely NO MATTER DIAGNOSIS THEN we'll talk about cuts. Bet that fixes a lot of those issues before it comes to more cuts. Those kinds of charges billed to insurance companies. If you don't have insurance? Expect bankruptcy from even just having a baby in L&D. We do need to deal with the national debt. We need to deal with fraud in all areas. Quit ASSuming everyone is committing fraud though! Healthcare needs to be more affordable. Insurance companies need to be held responsible for what they should cover. Big pharma needs reeled in, especially when they want to skyrocket the cost of Epi-pens for example "just because".  You know how much JUST a GENERIC med is charged to the insurance? Often still a lot. Yeah, less than name brand but sometimes not by much at all. Average for us is about 150 a month after insurance. Not bad right? Before primary we would be looking at about 1,200 a month easily. Two of the meds is 800 alone. That's JUST for one of the kids.  Well then let's get into what it would take to keep a insulin dependent diabetic alive. Easily multiply that by 10 before insurance. Now, even after insurance, I know people that still pay out over a grand a month for meds. AFTER INSURANCE even. Yeah, you read that right. Imagine the cost if they didn't have insurance.....

Remember the story about "pharma bro" Martin Shkreli and how he got convicted of  fraud and other charges? Well, because his case was unrelated but light was shown on how pharma works. At the same time of Martin's trial, the CEO of Turing Pharmaceuticals, decided to raise the price of the drug Daraprim (HIV drug) from $13.50 per pill to $750 per pill in 2015. "Just because"

Cut the net profits down where all are main livable wages, even really good wages but not BILLIONS in profits for these corporations by cheating the consumers, then I bet the rest will go down the line too.

I read this quote this week, "Crony Capitalism is Crapitalism, and right now we have what amounts to a monopoly in the health insurance business. We need affordable catastrophic insurance for the young folks, more companies once again with solid health insurance plans for their employees, and a lot more health insurance companies competing for customers. Then we can implement common-sense, cost-effective help for those people and families with legitimate needs for such assistance."

Bring back compassion and care vs "You don't make enough (too sick, too expensive, insert ____), death for you!" Mentality.  *insert sarcasm now*

So now, let's get to Medicaid and the plans to that.

(source)
"The result would be deep cuts to federal Medicaid spending for seniors, people with disabilities, families with children, and other adults (apart from those affected by the bill’s elimination of the Medicaid expansion). Earlier CBO estimates suggest that Cassidy-Graham would cut the rest of Medicaid (outside the expansion) by $175 billion between 2020 and 2026, with the cuts reaching $39 billion by 2026 or 8 percent relative to current law.

These cuts would grow in coming decades. That’s because starting in 2025, the bill would lower the annual adjustment of per capita cap amounts. For example, the cap on Medicaid spending for children and non-disabled, non-elderly adults would rise each year by the general inflation rate, which is about 2.5 percentage points lower than projected increases in per-beneficiary costs for those groups."
Now those with preexisting conditions (Easily 50% of the US population!) "the Cassidy-Graham bill would provide states expansive waiver authority to eliminate or weaken the prohibition against insurance companies charging higher premiums based on their health status and the requirement that insurers cover the essential health benefits related to any health insurance plan that is in any way subsidized by the bill’s block grant funding.  States seeking waivers would only have to explain how they intend to maintain access to coverage for people with preexisting conditions, but they wouldn’t have to prove that their waivers would actually do so."

That's not counting all the cuts states have ALREADY done in the last year or so already on those getting Medicaid. We have been fighting for seven years to get my daughter new hearing aids even though Arkansas USED to consistently allow kids a new set every three years. Medicaid here won't cover ANYTHING with hearing aids BUT the aids IF you can even get them to do that now. I keep getting the run around on that. Therapy times have caps now no matter what the child's case is, where they used to not pending authorizations. That's just the start....

So: Let's talk about the Medicaid part that WE have.

I know tax payers, including my husband pay secondary for my kids. One would be amazed at all the hate I hear for my kids getting SSI though. Anyone on Medicaid is looked at as a lazy, mooching leech. I'm looked at as one because my kids get SSI and nothing else. Because I stay home, because I'm on the phone so much advocating for them, because I'm at frequent appointments for them. Because I'm at hospitals with them as they face MRI's, sleep studies, EEG's, surgeries and more...... I'm judged for having had my kids, for them having SSI, yes, even by some who are either on Medicaid or have one or more children on Medicaid THEMSELVES if not more services than that! 

Hypocrisy much????

Don't sit here and tell me that a part time or even full time job for me would cover this. My husband, he's good with math. He has done the math. I would have to make at least 70k a year just to break even. That's not going to happen in this good ole' state of Arkansas. That 70k was before we lost our BCBS to the new insurance. God knows what it would have to be to break even now.... If me simply getting work right now was enough to cover all the needs, I would already be. Yet as many days as I would miss work due to appointments, hospitalizations, surgeries, plus the cost of care without the Medicaid, I and or my husband would have to be rich...... That's not happening anytime soon.... Besides, you find me an employer who would accept me having to be out days at a time for sick kids, weeks at a time for surgeries, day trips to appointment, scans and anything else. Medical related calls several times a week, sometimes multiple times a day, multiple specialist appointments a month sometimes, AND pay me at least 70k a year and likely closer to 100k a year just to break even with the loss of Medicaid. If not more...... Yeah, my kids would likely get TEFRA then BUT in the eyes of society that's still Medicaid. That's if TEFRA even exists at that point..... Now my son's therapies at no more than 60 minutes a week, would cost out of pocket over 23k a year. Easily. Primary BARELY touches that if the new one does at all. I know BCBS barely did and within two months, nothing was touched for the test of the year. Medicaid pays for that...... Hearing aids which neither the old nor the new primary touch, on average for a basic set would be looking at 3500 a pair then about 200 for molds, plus tubing and batteries. Could be much worse..... Yet because my daughter is still in school, the better she could get, the better chance she has in school. AND now we may be looking at aids for my son within the next few years pending his audiograms (Which insurance DOES cover but barely.)

-----------------------

Yet what if my kids were born normal and something happened where they needed a lot of medical care? Short term like a broken leg that needs surgery but will be fine in a year? Let's go beyond that. What about the kids diagnosed with an immune disorder and need IVIG up to every week? (Up to 10k per infusion) The child diagnosed with type 1 diabetes and needs vials of insulin, strips and meters? Average families can't afford that stuff. Yet what should they do? Let their kids die because they can't afford the meds and they know society will hate them for needing TEFRA or SSI? Even short term? TEFRA is Medicaid for the middle class essentially. Those children who would otherwise qualify for SSI but their parents/guardians make too much for traditional SSI, the main difference is the premium is relevant to income beyond that measure to qualify for SSI.

Would you tell them they should have never had special needs kids they couldn't afford with their spouse's income? I've been told that too..... Should they have been told they should have been sterilized to not have more "burden, defective, disabled" kids? I have.... And so much more..... SO tell me, would you tell someone who's kid was diagnosed with diabetes this? No? Then why do you treat those who have kids with medical/mental issues on medicaid like that?


For those who want to judge me: Well then I hope you are never put into the position that I was. My children would likely be dead if it wasn't for me fighting for them. I pray your children never have to face this either. Pray your kids or grandkids never get diagnosed with anything or else you or your children will likely be in the same boat as me. Being forced to make tough choices that nobody likes but we have to do. I used to bring in income too and eventually plan to again. Hopefully eventually with more than just my two year college degree I already have. Till then, my job is to take care of what my family needs, I just don't get money for it. My kids are more important to me than that. Besides, as I said earlier, anything I would make in this season of life would just hurt us worse..... I hope you can understand that so many families like mine are just trying to make it with the best we can do with what we have. Yes, many need Medicaid.... Yet we aren't leeches, we are just trying to give our kids the best chance we can.... And by the way, I have a basic, cheap smartphone from StraightTalk. I have medical apps on it that I use to keep track of stuff for the kids, hence why it's not a flip phone, otherwise it would be. Don't compare healthcare and Medicaid to the latest iPhone because it doesn't compare. And no, you will NEVER see me with a phone that costs what we would even pay two weeks in groceries, let alone THAT much!

Best thing I can say for anyone to do right now these days, is pray....... (And NO, the world isn't going to end on September 23rd (tomorrow) as some predict.)

Final thought: If you won't keep up with the news, the bills in the House, Senate and what it means for you, don't gripe about politics. If you refuse to go out and vote in the primaries AND the general elections, you have no right to protest who is in office. Don't gripe when it begins to affect you if you have not paid attention and contacted your representatives. Not that they listen anyway but we can vote them out next elections.

Blessings!

~ Special Momma ~

Doctors and Nurses

"Sometimes, real superheroes live in the hearts of small children fighting big battles." Sometimes the doctors and nurses are the best first officers for these warriors in this thing called LIFE.

Well this post is going to be for those doctors and nurses who have gone above and beyond their "call of duty" for not just my kids but many kids who have been in the medical world beyond common procedures like ear tubes and well child checkups. Sorry I rabbit trail in here so bear with me. Come join me down memory lane....

No coincidence I found these side by side Friday...

Our first experience with this journey was my daughter's first pediatrician thinking she might have Apert Syndrome. We didn't have internet nor cable at home at that time (rabbit ears at best) and I had to go to the library to do all of my research. May 2007 was when it was brought up as a maybe. June 2007 was a "for sure something is going on." and a month later was our first trip to Dallas Texas. (Yes we have driven past this exit too.)

credit

Oh lordy, I had no idea what I was in for. That traffic going southbound on 75 starting in Plano I thought I was going to have a stroke!!! Yeah, it was only about 11am too. We decided to do that trip there and back in one day. We lived to regret that. Dr. Fearon though was world renowned and since Arkansas had no craniofacial at the time, Dallas was our best option. He confirmed the Bicoronal Craniosynostosis but said it was not Apert but more like Muenke or Crouzon, two other syndromes.

Talk about being thrown into Holland and into a world of learning this and that!

credit

More like I started navigating this journey myself! Finding website online with support boards was huge. This was before Facebook, but not too long before it. I learned a lot!

Then came more learning with going back to Dallas a few months after our first trip. It was time for the first MRI. More to learn! First time my daughter was sedated.... That was hard...... Yet today it's "routine" for either kid to be sedated...... Next came preparing for her first surgery.

Procrit, blood checks, check-ups, scheduling, arranging, and so much more..... The pediatrician we had at the time, him and his main nurse we got to know pretty well in those weeks leading up.

The next time we went to Dallas we got the Ronald McDonald House for the first time. Though it wasn't the same house I have posted about on here before, it was the first house that was half that size and had community bathrooms and other differences. Yet the feelings were all the same. All of us were there, we didn't wish we were there yet were thankful for the House.

The night before the surgery I was up all night sick. It was nerves and I knew that but it was NO fun..... I had only met her neurosurgeon, Dr. Swift that morning.

Surgery day came, we kept busy and then recovery began. That was February 2008. Hospital life became a reality, even if for three days, two nights. This was technically in the E building as the actual wing of Medical City Children's had not been done yet. Honestly I was so wrapped into what was going on that I don't even remember what my view outside was. I didn't start appreciating that till later.

Time went by, more trips went by. We had to change pediatricians because the one we started with was moving on to other things. My daughter was two, almost three I think when we switched. I had already lost track by then how many trips and talks we had done with Dallas. Little did I know...

Headaches started up more than what I felt "comfortable" with by the time she was almost four. Back to Medical City for a routine week of appointments and an MRI. Little did I know it would be for almost a month, thanks to ICP testing. She got her favorite PICU nurse for three of her four days whom she STILL talks about that stay also. "Hey Scott!" "What??" *ROAR* was the game between the two of them. Soon after the *ROAR* also went to the neurosurgeon she had all these years. Dynamics within me changed that trip. I can't explain it but it's like my bond with Dallas grew in that 24 days. As nuts as it sounds, when we finally went home, with a new bike in tow thanks to her learning how to ride while there, I missed it. I mean, I did but didn't. For many, most would think I was nuts. Yet some get it.

 

This was the Medical City I have known since. They had the new stuff done by the time we came for our 2011 appointments. I think it was done sooner than that but I clearly remember it by 2011. You see, after years of doing trips, and fairly often, details start to blend together and it gets hard to remember when what checkup was done when. What really stood out to me though at Medical City Children's was all the colorful lighting that reflected. Neon light colors that changed to different colors of the rainbow, the bathrooms and even outside where you came in did that. I only wish now I got more pictures of it all...

credit

We started with Arkansas Children's also soon after our 2011 trip to get established with neurology there.

The first neurologist we had didn't work out for us so we got a different one and have had that one since. About two years later we also got established with the pain clinic. I only wish she had not moved on yet, she was good to us too.

Neuroscience has gotten to know us well over the years. We walk back there each appointment and start cutting up with the nurses and small chatter every time....

I never saw Children's like this till our first sleep study with our son. It's different!

Before this, I had always seen it like how I showed earlier.

Yet we were fortunate that we were still able to have our team in Dallas. Some of the best moments on the travels were at the rest stop just as you got into Texas going south on 75.... They knew us so well in there, we would walk in and they would ask if it was follow-ups or surgeries, knowing why we were going.

That famous Texas star was the best spot that the kids loved. Over time they filled in the flowers with brick but it was always climbed on, even by my son as he got older, and he was almost three the last time he went. Though my son also had a knack of getting people wrapped around his fingers. Even with the local nurses. (Unless you are one of those that had to do labs on him.... Or a cold sthesoscope lol) 

Yet my daughter had a way with people too, especially those in Dallas. (THe "Mr. Serious" neurosurgeon I had known for all those years I learned also had a good sense of humor. As long as scissors weren't threatened to his long hair. (Livy!)

I'll forever be indebted to the doctors and nurses we have had those years in Texas.... And to all of those who made this journey fun too, fellow families and new people we met over the years. And in reality, we have had to only "fire" two doctors in nearly 10 1/2 years so I would say we are doing quite well in that front so far.... I can't tell you the names of everyone we had but I do know some really have stood out over the years. Maria in outpatient at Medical City along with Norman. Honestly, we have never had one bad nurse at Medical City and only had one hiccup with one part of Children's Medical Center. Yet even when my son had his last surgery in Dallas the day before my birthday, the next morning a nurse brought me a Mountain Dew knowing it was my birthday and seeing that I had one the day he was admitted to PICU.

Not a lot do that.....
The Ronald McDonald House to me the best spot to sit though was on the enclosed back porch with the huge rocking chairs. Plenty of phone calls were done from those chairs of updates, good and bad, on where our journey was and where it was going.

I sure am going to miss these views though......

My children will miss this room the most.... (Old pic, MUCH more got added in after this. Dress up fire chief outfits (REAL stuff) clothes closet FULL of play clothes and so much more.... 

credit

It's hard to believe that all of that journey in Texas is really over..... Yet so many good memories, some being the result of going viral with Build-a-Bear but yet so many more people met from that too. Even people from CBS 11 news. I sure will miss the trains at NorthPark and the train display at Children's Medical Center though..... (Pics of NorthPark trains always done around Christmas)

There is so many more stories I could share, yet if I do that, It'll take you a year to read everything let alone write it all....

Now the reason for the first pic of this post, that goes out to the head nurse for the pediatrician. I won't go into details but this new insurance has tried to make it really difficult to even get the MRI my son was SUPPOSED to have in Dallas next week, done here, despite turning in everything they required. 48 hours turned into a week and nada. Often us parents have to be more warrior then caregiver but sometimes the best weapons we can use are those doctors and nurses who know what the kids in their care need the most. And because of this nurse, we will have that MRI in days time vs weeks. There is so much more she has done for my kids that I know I'll never repay her, even if I brought a semi truck FULL of Kit Kat bars.    I wish I had a pic of you with the kids to share on here Anita....

credit

Now last night as I sat with my sobbing 10 year old as it sank in for her in that moment that Dallas is over, I can only thank insurance for that...... Though in light of that mess, I just hope that the new team we will have will do just as well if not better and we will be able to gain many more memories on this journey....

Hey at least the next surgery the kids have I might get the chance to see the downtown skyline at night of Little Rock and see how that compares to Dallas. Though I will always be partial to Dallas.... AND I can at least say I got to hang out with mommas on this journey more than once in Dallas, and even got spoiled with the Cheesecake Factory with a few of them the last trip....

Last trip, little did I know it would BE the last.....

Every stay I had at the RMHD, I met new families..... Now I may not get the one in Little Rock but I think I can still have the opportunity to meet families. As Rebekah said on her blog,
"And we eat together, talk, help, comfort, laugh together.  And for a few minutes, the world seems a little brighter, a little less cold, a little more hopeful, a little less lonely."

So many families I tagged on this post when I shared it on Facebook and for those connections, I'll always be thankful. Though the season with Dallas is over, the journey is far from and I just hope and pray now that lasting memories will continue, new families will befriend mine and new doctors and nurses will do just as well if not even better as what we had....If it wasn't for the team we have had in Texas, my children would be dead or suffering, and they are neither. If it wasn't for therapists who do ST, PT & OT, they would be suffering and disadvantaged. If it wasn't for families like mine all over the cyber world, Children's Craniofacial Association and Camp Laughter, they would feel alone. There may be few near who understand yet so many abroad do. That is something insurance can never take from us.

To the first nurse who took us in at the first pediatrician, to Cindy, the nurse to Dr. Fearon, to the first nurse with our pediatrician now of eight years and his head nurse to the L&D nurse who held me as I sobbed, to the doctors (most) who have treated my kids......
For that, I am thankful. Good, bad or other in this journey, to know that doctors and nurses risk so much for saved yet also lost lives is something that can never be repaid. Thank you to the CNA's, the LPN's, the APN's, the RN's, the general practitioners, pediatricians, specialists and surgeons caring for my children with a loving heart.




Blessings!

~ Special Momma ~