“But rains pour down upon us, storm clouds darken the skies and we get lost in the storm. Have you been there? Wandering in the darkness, crying out only to be greeted with utter silence?"

~ Lesley Hitchens ~



"God puts rainbows in the clouds so that each of us in the dreariest and most dreaded moments can see a possibility of hope.”

~ Maya Angelou ~

Tuesday, April 10, 2018

Lone Wolf

 The lone wolf. What do you think of that phrase? Some people think of those who do lone attacks. There are those. But also the lone wolf is one who is alone. Does not belong to a pack. Fends for themselves. It is very hard for the lone wolf, especially if it's a female with pups to survive.




What do you think of what's written in that phrase? Is it better to be a sheep or a wolf in this context?




So many unanswered questions not only within my journey but within those around me. So much truth, lies and rubbish to decipher among many things. Makes it all the harder to trust what people say, especially when actions speak louder than anything else. Everything else is a truth, lie, unimportant or forgotten.





I started this post a little while ago back with something else planned for it but I saw something yesterday I want to expand on. So often parents who have kids with medical and or psychological issues fight alone. Really. We do much more than just care for our kids. We do more than just doctor visits. We do more than surgeries. We do more than research on what our kids are diagnosed with. We do more than drive hours each way for specialists. We fight battles we should never have to fight just to assure or children live. Welcome to the world of insurance, where sometimes they would rather have our children die than to care for them. No future for humanity without the kids of today no matter the diagnosis.

A mom, Elena Hung shared this, "Fighting insurance was not a battle I should have had to take on. I hope that by me being the advocate for my child, it will prevent others from having to go through this." - Lisa Begner, mom to 5yo with complex medical needs.

"Parents of kids with complex medical needs always speak up. When our kid is sick, we speak to doctors. If they can't get what our kid needs, we speak to insurers. If they won't help, we speak to legislators. Little Lobbyists never give up. Together, our voices are louder." That was shared in light of this post.


Obviously insurance is more worried about profits than life. Hospitals and clinics are sometimes just as bad....

Where's the outcry over equality there? Oh that's right, the more money one has, the more silent everyone becomes no matter how unrighteous or evil a deed is..... Welcome to politics.... Welcome to cliques.... Welcome to pecking orders......

I am no different than many of the medical families in this country.


We are all fighting....


I have slept in hospital chairs, recliners and cots. I have skipped meals, cried from fear and joy. I have become an expert on all of the conditions my children have. I am a strong advocate, I will roar when I need to roar. I have had to make life changing decisions for all of us. Often though, I'm the lone wolf in doing just that. I have made enemies over the years for speaking up. I have fired doctors from treating my kids. I will never go down without a fight. I have lost battles over the years but I will win the war. I am the parent of medically complex warriors.


Spring 2007 my daughter was born. July 9th we got her first of a handful of diagnoses when we took our first trip to Dallas Texas to meet who would be her first surgeon. There was nobody in Arkansas at that time who could do what was needed. Fast forward to 2014, numerous trips to Dallas, MRI's stays at the Ronald McDonald House, and two craniofacial surgeries under our belt along with a separate ICU admission there. Then my son was born.

Now, before he was born, I had a miscarriage in March 2013... I was told that the craniofacial syndrome was too strong in that child and that's why it died. I did get at least a partial answer of what went wrong and it has nothing to do with craniofacial and in fact was something extremely rare. I was also told by a few others that I was a fool to get pregnant anyway knowing how "bad" off my daughter was. So when I found out I was pregnant with my son on what would have been my angel's due date, I took that as a sign from God that all would work out. Late spring 2014 he arrived.

That same day, the pediatrician confirmed the brachycephaly and his journey began. The next morning I learned from a friend that a mass text had been sent out saying, "Well we have another Muenke child in the family. I'll love him anyway, God brought him." and I bawled... The stuff had already started.... A week later I got the first outright comment condemning me for allowing him to be born "like that" and that "I should have never birthed more defective children."

Yes, by a local Christian....

August 2014 my son was seen in Dallas for the first time. Confirmed the journey. Little did we know how much though.... We came back in March 2015 for his first MRI and another one for my daughter. Her appointments that trip went well. His not so much. His first surgery was decided, how they were going to do it and we learned he was also affected by Chiari Malformation. I went home devastated.... That's a long drive from Dallas to home to think... And overthink.

Within a week of being home and many phone calls to arrange the surgery and all of the planning for that, I got told by a "friend" that "You asked for this by having that defective child and given how you leech off the government already, you should never have had that child!" (The only government "aid" we get is the kids get SSI for their medical issues.) Without Medicaid as secondary insurance, my daughter would not have hearing aids and we would likely be homeless due to medical bills.... Others get TEFRA as well, which is Medicaid for higher income people but with a premium sliding scale.
Anyway, His first surgery got done in July 2015.

That October we went back for a follow-up MRI. It was not good. We only saw part of the spine in this scan but that day of the scan we learned of syringomyelia, platybasia and basilar invagination. The neurosurgeon confirmed it the next day. Forward to April of 2016 and with that MRI we learned how bad the syrinx was. Our visit with the neurosurgeon this time was in his main office. That's never a good sign. It was time to do a decompression. That drive home was sobering. I drove home from Dallas knowing I would be back in less than two months. I called a fellow mom who lives many hours away and we talked and cried.... There are only a few of us out there who face syndromatic cranio + chiari.... Surgery for one can drastically affect the other. One of the first things said to me by someone at church was, "Will that make him r*****d?" I don't know what the intentions were in that, I hope good but that hurt... Others simply blew it off. The worst of the comments were either shortly before or soon after surgeries...

Fast forward to May 2017. My daughter had technically three surgeries in Dallas with her team, my son had two with them, been going to Dallas for 10 years at this point and I trusted them. I knew the Ronald McDonald House, Medical City, I knew Children's Medical Center. I knew the familiar smells, sights and sounds... I also knew Arkansas Children's but only for sleep studies and outpatient. Then hubs called me and said insurance was changing. I panicked.... Weeks of calls with the Dallas surgeons, hospitals and the new insurance company. Promises from all that they would make things work so we can have continuation of care. When we got officially switched, I learned that anything outside of Arkansas was out-of-network and we would have to pay at minimum 60% of everything. Everything... Now because out-of-network isn't contracted, insurance could choose to only pay 500 on a 100,000 bill and because of that, we would be stuck with the balance, if Medicaid didn't pick anything up. August 16th, 2017 it was officially over. August 30th, we officially cancelled the September appointments we would have had for both kids. No way we could have Dallas anymore. Broken promises. March 2017 was the last time we would see anyone there. No chances to say goodbye.... My daughter sobbed and sobbed. So did I. I had many tears since the day in May but they didn't abate for a while after either.... Then I got angry.....

Over the years I learned that when most, even most friends/acquaintances asked, "How are you doing?" "How did things go?" "How is so and so?" or the like, they simply want to hear "good" and move on. Even if you have to lie to say it. If you say anything else other than "good" their eyes glaze over, pretend to listen at best and at worst make an excuse to leave. 99% of the time before a basic sentence is finished. Don't ask if you don't honestly care or don't want to know.... What got me most angry was this: Anyone that knew me knew what was going on with insurance stuff and what had been at stake. I posted a lot about it all despite being told to shut up already..... I was told that if it's God's will for my children to die or suffer because of lack of proper care, then let them die.... I was told "just roll with it and whatever happens, happens" I was told to get over it, "You had these defective kids, you deal with it!" was also a common statement. I was told to quit griping, I was told to suck it up, I was told I'm a bad parent because I can't afford to pay out 60% plus for everything in Dallas, and more. Yet many also said, "Why if you insist on Medicaid would they even want to cover out of state? No matter what, why would they want to? You are just a spoiled brat!" Spoiled or not, we should have the right to see who we want to see! Keep the team we had from day one.... We had that team because when we started, Arkansas didn't have! How come do others get to go out of state for care and treatment and we can't..... All thanks to insurance and lack of funds... That's how I felt... Though when I would present the question of "how" I was always reminded that at least I got Dallas and I should just deal with what I have now, no matter what it all means.... No compassion..... I was just seen as selfish, greedy and ungrateful....

Bet they would never say that crap to anyone else locally let alone supposed "friends/family" of their own!

All of the statements came from locals here, loved ones, "friends" and more No joke...

Now, most of these trips over the year I do alone, I do alone to save my husband time off from work. Many of his vacation days go to surgeries or to stay home with one kid while I take the other for their appointments. I have no regrets in those decisions but it makes it harder when we get bad news.... I listen to lots of music to and from. I know the back roads to these places, even though Dallas has been a year ago now since we last went, I could still drive that by memory...
It hurts honestly.. It still does. So many friends I've met on this journey who started out just like us that I hope to someday see again..... Though not good odds.........

We had my son's first MRI here last September. We met the new team in October and had a CT scan done the same day. We were told to add some type of connective tissue disorder to my son's diagnoses list by the neurosurgeon. His skull was pretty much totally shut, two tiny sutures open and that's it. Very uncommon. My son has since had another craniofacial surgery. That was in November, partly so soon due to grade 3 pappilledemia (Indicator of way too high pressure on the brain). The new team said that his case was one of the worst they had seen. Things change so fast sometimes..... We have followed up with the new craniofacial surgeon a couple of times but we have yet to see the neurosurgeon in clinic since the surgery. He's been in the OR during the scheduling.... Hopefully we'll see him in September when we go back for that. We always got to see the team together in Dallas.... Nothing missed..... Two missed here already due to overbooking or emergencies I've been told....

My son and daughter both have other specialists, other diagnoses we have to monitor and treat. We are often doing local appointments or Little Rock for them but more often my son. We monitor him daily for hypoglycemia issues as well. Still trying to figure out the "why's" for that one....

What a coaster!!!




You know, that meme doesn't tell one thing. They forget that the coaster goes into a pitch black cave where nothing can be seen and yet you hear a lot and feel a lot. Sometimes that's life too. That's where that boy's face really fits. 😂 It's where mine fits the most!!! 🙊🙈 Sometimes my reactions on the coaster I'm glad only God and a couple of others know about..... 🙊

Anyway.....





So why am I so passionate about "equality" then?


Well for one, the first ones to tell me they are there when I need to talk, are also the same ones to first silence me. If we are supposed to disciple and help one another, then why the pecking order with it? Why do we pick and choose who is worthy of friendship, help, services, etc?

Why do we run to the aid of some in life storms yet silence and or ignore others in theirs? Do we believe in the pecking order?

Cliques? Are those we silence or ignore unworthy?



Let's reverse roles.


What if you were treated like that? Is it still okay then or would you protest the bias then? Yeah, I know "It's just life" but really? Would you be so quick to turn your back or make excuses for it then? Would it be okay for the stuff said to me over the years be okay if it's said to you? Would it be okay if that homeless person you ignored turned out to be a loved one of yours? Would your attitude be different then? How is it acceptable towards families like mine then? How is it that I need to just stay silent but you wouldn't stay silent? How about those telling to me to shut up and "roll with it" do the same when it happens to them. Bet they won't.

See my point?

So what makes it okay for people to be treated like that then? Is it more okay for it to be said to someone like me vs someone like you? Is it more okay to say that to a poor person or an outsider than someone who is rich and or a governor of a state? I don't think so. Or at least that's not what I have been taught. Remember the Golden Rule? Treat others like you want treated. So why do we treat the homeless man on the street worse than we would our favorite actor?




Jesus didn't treat people bad so why do we?



I know some special needs families on the brink of being homeless due to medical bills and nobody helps them emotionally or financially. I know of one child who died without a surgery they needed because the child had Down Syndrome and they didn't want to give a heart to her and the fact that the child's family didn't have good enough insurance/money.

I can't stand for that stuff..... Yet others get everything.... Speaking nationwide here. So many struggles yet some are so alone in that.... That should never be.



I did make a comment in a Facebook thread recently asking this: "Why can't people post about others without getting hated on? Why can't someone post about their family, themselves or me about my kids having a surgery or trip for yet another follow up, people asking for prayers, for example or share posts about other families in need type of thing without getting accused of being selfish yet everyone can talk about others with no problem. That's my point too. THAT bias and hypocrisy is what bugs me. It has nothing to do with WHO is posted but HOW people treat others who share requests for prayers and or support are treated. Not just Facebook either....




That's where my heart is, for those who don't have people, support, love, compassion and worse have judgment and labels.......



Yet speaking up for that turns all of that hate and anger from them onto me. That's not right either."
Many hateful things have been said to me over the years about my children by some family, by people where I live and some by random people on social media. I need to deal with those resentments along with my manner on different platforms, even though well intended posts over the years when I have been upset, it's not always the best place despite feeling like sometimes it's the only platform I have to speak. Though we have also had emotional and spiritual support over the years by a good handful of people. There are days where I really struggle though... There are days that go by sometimes that I hear from nobody, sometimes I will through Facebook, and even then sometimes not. I'm learning that being a hermit is better anyway...



So......


Will you guys pray for me as I deal with the resentments I have in my heart? Often I feel alone in this journey because generally I am and instead of just dealing, I let things build..... I'm a fool but it's the truth..... I don't know how many more surgeries, scans and appointments we face but I fear my son's future the most..... When we lost Dallas this summer thanks to new insurance, I got bitter. I only got more bitter at this journey as I saw how few cared we lost Dallas.... Many hateful things said about it... as you read above. I tried not to but I did get bitter..... I've let it build in the name of "equality for all families like mine" because of the hurt and all it's done is cause more strife within myself but also in my "calling people out reminding them to treat medical needs families equally" posts....

While I still think families should not be treated differently simply because of who they are, I do admit I don't always know the background details in what each family has or has not been given or shown. While I do think that families should be able to choose who and where they get any sort of treatment from, as seen in my life, we don't always get that. Many don't have the money for that, especially if insurance refuses as well.

Many children die annually in this country alone because of lack of care and or not receiving the best care possible due to constraints like that. Clinics, hospitals and insurance. All three carry some of that blame and responsibility.

I think what bugs me me the most within it is that in this country, some families are treated like royalty and given everything they need for the journey and others who are worse off are shunned and ignored..... And sometimes left to die in the cold.....


That is what I try to speak up about....
It's just perhaps silence is sometimes better.....


Yet then why stay silent? Jesus didn't have that inequality in how he was with others, we shouldn't either. For cryin out loud, he talked to Samaritans! The people in that day who were the biggest of the biggest outcasts to the religious especially but really anyone in Israel.

That's honestly how I feel we should be........ No matter who it is. No matter the popularity, name, financial status, insurance status. NONE! History was never made by people just staying silent. Esther didn't. Churchill didn't. The Nazi's weren't defeated by those afraid to speak the truth about the evil being done.

If we see injustice, why then should we stay silent? Can't we do anything? Faith without works is dead. (James 2:17)

I'm not saying give everyone money, I'm not saying be a doormat, I'm not even saying lose everything for a stranger. What I am saying is be compassionate. Show love, show light. Put yourself in the other person's shoes, even for just a moment. Feel what they feel, think how they think, see where they are coming from. Quit judging and condemning! Do more listening! 



You may be the only person who ever has shown them Jesus.....


Go out there and show the world you are a warrior. Lone wolf or in a pack, go get em guys! If being the only one fighting for a cause makes me a lone wolf then at least I'll have the conscience there that I tried my best.... If the world shows you hate, try to not show it back..... Love trumps hate. Chocolate helps....

Celebrate Recovery is one place where I feel like I belong. One place where I feel Jesus. One place where I feel loved no matter what. I have accountability there yet I know and feel the motives by it. It's genuine. That's rare to find in the faith these days.....It's where I can speak of my hurts, habits and hangups freely..... True healing......It's a group I will always be a part of.

Lifting others up in healing and discipling is what we were called to do, not hate and condemnation "just because _____"



Think on that.





~ Special Momma ~




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