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.

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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?

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

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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.)

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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.)

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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!

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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...

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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.... 

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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....

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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 ~

It takes a village

This post was born due to reading this yesterday.

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A mom I know shared it on Facebook. Maybe I shouldn't have but I replied with, "The same should go for special needs families. I think like the article said, too many have blinders on and have forgotten what we are all called to do and that is to take care of the village, no matter what, no matter who is in it and no matter social or financial status of those in that village."

So why don't we?

One part really resonated. "“Has anyone brought you a meal or asked to watch the kids to give you a break?”  “No”, she said. “But plenty of people tell me they are praying for me." Where was the church body in this? The body of Christ?  The Village?  Why was it in a church full of young families, constant play dates, and VBS, this family was receiving no support from the church body?"

The page had more, it gave ideas for people within the church to reach out to those who have foster kids. It said the village (church/community) had a job to take in orphans or care for those who have orphans, no matter how long it lasts. It also mentioned sending your kids over to play with the kids who are in foster care. Sign up for meals and bring a meal at least once a month, offer to clean a room in the house for the caretakers, and more.

I love these ideas! Now, how can we incorporate that beyond just foster care?

"I got no clue what you are going through but I wish I could help." Words that people need to say more to those around them. ASK how you could help those around you. I'd wager 9/10 you will get taken up on that offer for something! That goes for ANY family in need. Foster, special needs, grieving, etc.

There is a need beyond just foster care that's not being addressed. Many in those families suffer badly too.

Special needs families. Let's start there..... Now "special needs" is very broad, yet it all means that the family has one or more children who are not considered "normal". That can be anything from a family dealing with dyslexia, ADHD, asthma, diabetes all the way to wheelchair, vent dependent, on hospice, life support, and so much more... It would take me a year to list everything and then I would still miss stuff.

Okay so what about families who lost their main breadwinner. Either through death, lay-off, fired, divorced, whatever. Do you realize how much that changes their world? What they fear and face? Would you help them? Why or why not? Would you help them for a day? Week? Month? Six months? Would you cut them off at a given point, no matter the reason help is needed?

Now what about a homeless person on the street? Would you help them? Would you lead them to getting back on their feet? Would you serve food to them? Would you sit down with them and find out their story?

Why or why not? Is it because after a while, you would think they were leeching? Using you? Using the church? Using whomever? Abusing the system? Making people pity them? Using their storms to take advantage of others or receive pity parties?

That's beside the point though. Really! Don't believe me? See this.

"The inconvenient reality of compassion: While discussing James 2 this morning in life group, the issue of poverty and "the poor" came up. There was some comparison of the poor here to the poor around the world, and the assertion that many American poor are that way, to some extent, by their own choosing, or purposely as a way to "game the system" (is that a phrase?). It's hard to want to help and show compassion to people who put themselves in a position of need. But if we're going to claim Christianity, and show the love of Christ to the world, then their needs and what we can do to help should be the only two points of interest. How they got where they are, or their attitude towards our help, or their willingness to change their ways don't matter. The love of Jesus is unconditional towards us. We didn't earn what He freely gave us, we often don't show gratitude for our salvation, and we chose, and continue to choose actions (sin) which require Help that we can't provide for ourselves. It's a good thing that when God looks down at us, living our lives marred by sin, and disgusting compared to His holiness, that He doesn't roll His eyes and shake His head, like we're some bum with a cardboard sign. Because we are all about as worthy of Salvation as the bum on the side of the road is entitled to my help. That's Christianity; helping BECAUSE it's needed, and not worrying about WHY it's needed. And that is a very inconvenient idea, especially in our Americanized church""


Do we treat these kids and their families like they are in the village? All the time? Sometimes? Not at all? What if you don't like someone in that village? Don't like what they say? Don't like what they post? Don't like what they wear? Get the point?

In all reality...................





It doesn't matter!

If we are going to claim to follow Christ, then none of those differences SHOULD matter. Yet then why does it?



And before you get your feelings hurt, I am not writing this because of our storm. My storm right now only highlights it. It's an example of how we all lie to ourselves that we will all be that village that helps each other.

If we were then why do we categorize each other? Why do we label others? Why do we help some but not others? I've brought this up on Facebook before and usually got lectured for it but I think it's a legitimate question. How come is it that when families are in need of prayer, (No matter the reason!) some get a ton of support, profile pics changed, money raised, clusters of prayer time, long term support, etc. Yet there are other families out there largely ignored, even though they have the same needs..... Is it all just a popularity contest? The more popular gets the greater support?

When I have raised this question in the past, I have been told several answers (opinions). It's because your kids aren't sick enough. It's because you have ongoing. It's because they look healthy. It's because you chose to have special needs kids. I just need to be thankful I have people that pray for us at all. I just need to shut up and mind my own. And more.

So let me ask this:

. Who would you rather greet on Sunday morning? The man in a suit and tie, spit shine clean or the man in rags and filthy?
. Would you show more compassion to? The child on the street begging or the old woman?
. Who would you help more? The mom with a bunch of kids or the mom who leads in the church?



Now be honest here, what were your first impulse answers? I could give more examples but I think I made my point. Would you welcome all of them in or just some of them? Would you welcome them into your Bible Study class? Would you encourage those friends with you to welcome people no matter what? Or would you see what everyone else does and then sit and snicker at them because they don't look or act like YOU think they should?

I know people who have left church because of this..... It's heartbreaking really. Yet what will we do about it?

I decided to Google "What are the main reasons people leave church?" Here is what I found.


.“The pastor did not feed me. (Spiritually)”
.“No one from my church visited me.”
.“I was out two weeks and no one called me.”
."I have been out for a few months sick and nobody has said a word to me."
."The pastor and elders avoid me."
."A church that I used to go to would always tell me to “get over it”, “that’s your problem, or “you need to be more forgiving”. To me, those are valid reasons for leaving a church."
."I was seeing where the storm I was in, I had no support from anyone. Though at the same time, another person had a less severe storm and everyone flocked to her."
."Loveless, uncaring, control freaks are what people are leaving."
."It feels to me that people are so busy “doing church” that they are losing the concept of “love” in the church. You hear things like, “We want to increase the membership, spread the gospel…” There are so many reasons why church growth is sought after, and I agree people should come in, and hear the word, grow, learn, share… But, too many churches are just adding to the numbers."
."When a number of churches have a majority of cold, formal and distant member within a 90% range, we have a serious problem. Yet such a problem is ot addressed over the pulpit because “nobody wants to be criticized or ‘told’ what to do”. And more often than, men like myself are blamed instead of the church saying “The problem is not with him but is with US.”"
."The church does not want to look at the wrong thing they’re doing. If you even disagree a little they rather kick you out instead of investigating what is really going on."
."When my mom died and no one really did anything, I knew that this was not the family I wanted. The church itself is an exclusive Country Club and that is why people leave. When I have a real problem, I stay away from church. Church should be the first place I go. But instead of getting loving concern or living water, I get self- righteous filthy rags filled with dirty water."

And so much more....... OUCH!!!!

The words from Dr. Steve McSwain shares,
"Bill Gates once said, “The most unhappy customers are your greatest source of learning.”

If that is true, why are most evangelicals and fundamentalist Christians quick to say, “Those leaving the church are just not committed to Christ.” Or, worse, to quote the words of Thom Rainer, CEO of Lifeway Christian Resources, “I would therefore suggest that the main reason people leave a church is because they have an entitlement mentality rather than a servant mentality.”

Really? “Entitlement Mentality?”

If a company like Microsoft were to adopt such logic to explain declining sales or why fewer and fewer were buying its product, you don’t have to be a Bill Gates to figure out what future Microsoft would have.

If your “most unhappy customers are your greatest source of learning,” wouldn’t it be more humble, even more Christ-like, for churches and church leaders to ask, “Might there be something wrong with us?”"


Now this isn't talking of the "feel good" or the "If you are saved, life here will be perfect and you will prosper" NO! People want real. They want the truth. They want the truth in love. They want love, compassion, understanding, equality despite social classes, LOVE AND SUPPORT FROM MEMBERS!

Sheep often leave the fold because they are being abused and starved!

"When someone is hurting, absent, or in a dark place in their lives; how much effort does it take to acknowledge or maybe even appoint someone to just offer a word of encouragement. Many pastors, department heads don’t want to invest in the lives beyond their formal assignment. They often complete their assigned task, and they keep it moving. It’s the churches that completely ignore or perhaps even desert people in crisis that I see no evidence that Jesus is their driving force. If Jesus shared the parable of 1-lost sheep, or coin that was sought after, who are we that we can’t stop and at least consider our brother or sister in times of need?" ~Unknown ~

Did Jesus teach "Only be around those who have it all together" "Only talk to those who aren't "one of those" people." "Only help those that you want to help, not the mom over here who brought it on herself." "Only help the popular person with a life-threatening illness, not this family here who just lost everything." "Only help this rich person get back on their feet, not the poor person here who lives on government aid." "Only help those who help themselves."

You get the idea. So what did Jesus SAY to be like? Let's get into that.

If Jesus did what the "church" (Pharisees) then taught, he would have NEVER been near the Samaritans let alone TALKED to one! That was the law back then. Anyone who was not a Jew, had an illness like leprosy, and much more were outcasts, they were rejected, often left to suffer and die if they needed any sort of help.

The Jews and Samaritans had been enemies for hundreds of years. The Jews of Jesus' society considered the Samaritans to be unclean, socially outcast, religious heretics. (ouch!) Do we look at anyone like that? Be real now...

Jesus taught MUCH different! They hated him for it too! That's why they wanted to kill him. Doesn't sound very God like to me! Yet they claimed they were OF God and obeyed all the laws.

First off, love God then the second was love your neighbor as yourself. Verse here Well, who is your neighbor?

ANYBODY NOT YOU!

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So what does "Love thy neighbor" really mean? Let's look at that.  Now honestly we should not exclude anyone or any group because of social status, a supposed character fault, religious difference, racial difference, ethnic difference, citizenship difference, etc. Right?

"Jesus is quoting here from Leviticus 19. Let’s look at its context:

“When you reap the harvest of your land, you shall not wholly reap the corners of your field, nor shall you gather the gleanings of your harvest. And you shall not glean your vineyard, nor shall you gather every grape of your vineyard; you shall leave them for the poor and the stranger: I am the LORD your God. You shall not steal, nor deal falsely, nor lie to one another. And you shall not swear by My name falsely, nor shall you profane the name of your God: I am the LORD. You shall not cheat your neighbor, nor rob him. The wages of him who is hired shall not remain with you all night until morning. You shall not curse the deaf, nor put a stumbling block before the blind, but shall fear your God: I am the LORD. You shall do no injustice in judgment. You shall not be partial to the poor, nor honor the person of the mighty. In righteousness you shall judge your neighbor. You shall not go about as a talebearer among your people; nor shall you take a stand against the life of your neighbor: I am the LORD. You shall not hate your brother in your heart. You shall surely rebuke your neighbor, and not bear sin because of him. You shall not take vengeance, nor bear any grudge against the children of your people, but you shall love your neighbor as yourself: I am the LORD” (Leviticus 19:9–18).

Notice that loving our neighbor would include sharing with the poor and the alien; compassion and absolute honesty and justice in our relationships with others; impartiality; a refusal to be a party to gossip or slander; an absence of malice toward anyone and a refusal to bear a grudge; taking care never to put another’s life at risk and never taking private vengeance upon another. It is also interesting to note that when we have an issue with anyone, we should strive to make it right by going to him or her directly. James calls this the “royal law” (James 2:8). Our Lord taught that we should do to others as we would have them do to us (Matthew 7:12).

It is a fact that anyone who does not have a personal relationship with God through the Lord Jesus Christ will die in his sins and face eternity in hell. Therefore, we owe it to our neighbors to lovingly share with them the good news of the gospel. True believers have been forgiven, possess eternal life, and have blessings forever as the result of others who have shared the gospel with them. God’s love is evidenced in us as we communicate this precious gospel and love others as we have been loved."  source

I also LOVED this. "Does this mean we can't satisfy Jesus' command unless we have abundant wealth to give, or extraordinary talents to serve other? No! It is not how much we give, but the spirit in which we give that counts with God. Each of us is called to give generously of what wealth and talents we have been given - whether it is a little or a lot. Jesus compared a poor widow, who gave only a little, to the wealthy men who gave much more. The wealthy men had only given a token amount from their great wealth. In God's eyes, the widow gave much more because she gave from the heart:

Jesus sat down opposite the place where the offerings were put and watched the crowd putting their money into the temple treasury. Many rich people threw in large amounts. But a poor widow came and put in two very small copper coins, worth only a fraction of a penny. Calling his disciples to him, Jesus said, "I tell you the truth, this poor widow has put more into the treasury than all the others. They all gave out of their wealth; but she, out of her poverty, put in everything- all she had to live on." (NIV, Mark 12:41-44)" (source)

How else do we show love then? Well, preaching is nice but without action, our words mean dirt. So let's look at that.

Find your neighbor
Seek out someone that God has placed on your heart. Seek out the hurting, the outcasts, the sick... Seek them and love them for who they are, not for who you want them to be.  Jesus ate with tax collectors, he talked with prostitutes and spent time with the sick.  His reputation was not even a factor.  He spent time with them because He loved them unconditionally.  We have to put pride and our reputations down at the cross if we want to truly love others. Without this, we do not.

Pray for your enemies
"Pray for those that persecute you!" No matter who hates us or who we do not like or *gasp* feel hate toward, we are required to show them love, no matter what. Show them the grace and mercy that God showed us.

Be legit
People feel love when it is really expressed. Really, though, it needs to come from the heart.  Sometimes it is better to do something that says, “I love you” than saying it. Prove you love those around you. Help them! Be there for them! Show them compassion! Be a listening ear! Reserve judgment or opinions unless they are specifically asked for. Show you care. offer to help. Offer to do examples like mentioned earlier in this post.


When we answer our neighbor like we “ought” to, they will be drawn to us.  They will notice something different about us if they are not already a believer, and that is what attracts them.

They will feel less alone and isolated in an already tough journey..... People would be much more likely to open up and grow in Christ, the more love they feel, the more compassion and the more cared about, the more they can grow.

A rose can't grow and bloom in soil that is dry. It won't grow nearly as well in soil that isn't nourished. God allows the water, we allow the nourishment. Really God does both but that's not my point here.

How are we to grow as we should if we don't have people there to help us along? How are we to disciple to each other as Christ would, if we do this pecking order of who is more worthy?

Look at it like this:

   Living                           Dying                       Dead


Often we don't notice someone is hurting or needs help till they are spiritually/emotionally/physically dying. Sometimes it's too late to help them back.... The hurt is done, they have been betrayed, they have been turned away from faith because those they saw who said were Christian, shunned them.... Betrayed them.... Ignored them.... Left them for "dead"

Do you want to be responsible for that? People are lonely and hurting and need Jesus! They need the word of God, NOT entertainment.

Think on that. It really does take a village and that village needs to treat each other as Christ commanded. No labels!

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The biggest tragedy we could have is to get to heaven and find out that many of the lost that we could have led to Christ, didn't because of behavior like this.


~ Special Momma ~