“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 ~




Tuesday, January 30, 2018

Just Keep Swimming.....





Faith over Fear




This post is dedicated to all of the rare, special gems out there, and especially to those of us who care for these gems, parents, grandparents, nurses, doctors and so many more....



Though all of us are on different paths, we all have one thing in common. We all have to keep swimming. We all have to remember faith over fear. We all have to cherish the little things because it is those little things that will help us move forward when the big things happen. Almost all of the families that I know in this journey have one thing in common. The brain..... In one way or another, neuroscience is our main artery with each other. When one hurts, we all hurt, even if we don't know the other person well.

Many of you know I love listening to Audiomachine. I was listening to a playlist on YouTube and this song came on as I heard about little Vera getting a flight to Children's Friday night. Also last week another friend's little boy was life flighted. Thankfully he is doing okay now. However I learned last night Vera gained her wings.... Another one has been ill in the circle also. And there are so many others out there, some I know, some I do not. I bet every one of you reading this know someone who has been blessed with a special angel yet know they struggle sometimes, and sometimes they struggle daily.... Yet Vera means "Faith" and "Truth" and I know we all could use that...


Angel Vera with her momma. Click here to help them in this time.
Posted with permission.
Pic taken by https://www.facebook.com/TheRedFlare/


As each of us continues on our own journey with our precious gems, let us remember what happens when you shine light in a gem. When a gem radiates light it makes rainbows.








Not a lot will see those rainbows in life. There are some in this world who flat out refuse to see the rainbows within our gems. Some live in darkness. They are hard-hearted and cold. Often they don't see that they are till a bright enough light breaks through them. God can use anyone to do that. Sometimes it take tragedy to bring that..... What crashes around us can leave us so broken yet sometimes that brokenness brings a new dawn of hope......

We have to remember that sometimes each other is all we have. God is with all of us. Yet God uses each of us for something, for a purpose.

Now I will admit I have often struggled with this journey. (No brainer there) I have struggled with bitterness, anger and frustration. I have struggled with where my place is. I have struggled with if God really loves me and if I'm the exception to that love the Word says. I struggle with why bad things happen and what the purpose is in that. I have struggled with the unknown, I wrestle with it often. Especially with my son, there is a lot I don't know about. Things I wish I had answers for as to why this or that. Yet so many of these gems don't even think on all of that. They just live. They bring joy. They bring light.

Yet when the candle in their soul goes out, we all know it...... We all feel it. Yet I truly believe that they would want us to keep their legacy alive. They would want us to shine that light for them. To be there for others on the journey just starting, or those having a bad day, or another diagnosis or even when the entire world crashes and they are told "There's nothing more we can do."

That song that's stuck in my head right now to me resonates as a battle song. Going to war. War often means death and destruction yet out of the ashes of war so much can arise from it. So many of our kids are at war, some don't know it, some do. Us parents sure know it. Often we are the ones wielding the swords and shields going to battle to protect our rare gems from things of the world.

Our faith and love for our children is our greatest weapon. Yet sometimes we still lose the war...... But did we really lose the war when one of our gems gains their wings? I don't think so.

We can still shine on. We can still show their legacy through us. I think deep down, we all know our precious and bright gems would have it no other way.



Let's go out there and show our light. Be like the children who are always happy, who smile through chemo, through shots, through surgeries, through yet more tests, through stays in ICU, through hell and back yet they stay strong. Let those children teach us how to do it. Let those children remind us to do the same for those around us. You never know who you will meet and change forever...... Even if it's in the waiting room.... Or a Facebook group.....

Remember my PICU story? Had I not already been there, no telling who if anyone would have been able to comfort this family.

Nurses and parents are on the front lines every single day..... They are the first ones to run to a child's hospital room and start CPR, cry for help, give meds, help with the meds, laugh with them, hold them, hold the bucket as they puke, tell them it will be okay when the child is sobbing because of this or that. Yet ask almost any nurse and parent and they would tell you they would not have it any other way. Why? Because they know they make a difference.

Faith and Truth..... Let's all have a little bit of Vera in us. Shine our light within us because you never know who needs it nor do you know who will be changed by it. Let's go out there and make a difference in those around us.








Matthew 5:14-16
“You are the light of the world. A city set on a a hill cannot be hidden; nor does anyone light a lamp and put it under a basket, but on the lampstand, and it gives light to all who are in the house. Let your light shine before men in such a way that they may see your good works, and glorify your Father who is in heaven.


Blessings!
~ Special Momma ~


Thursday, January 18, 2018

Broken People

"The lone wolf will have to learn how to do it on her own. She does not have a wolf pack family she belongs to. It's not that wolves are cruel or kind, it's the harsh environment they live in."
(PBS Nature 1-17-18)


(Bear with me through this post as it's long but will get better as you go along.)


"Others aren't that interested in a broken person." "So you just felt alone in a lot of ways?" "I was alone."

CBS Sunday morning interview with actress Sharon Stone 1-14-18
A stroke in 2001 almost took her life. Yet Hollywood didn't want her back because she was broken. Even an amazing recovery, she was still not seen as "good enough" to come back..

That interview struck a deep chord within me.





I've always been a broken person. No doubt of that. I profess the faith in Christ yet I still feel incomplete. Why? I feel like I'm mundane. Like my life isn't a waste because it's not that, but that it's irrelevant in that I'm a nobody. Mundane. I feel like I'm doing no good in this world impacting others. I fear when I die and face judgment day that I'll hear that I want good enough, did enough in my faith so therefore I'll get spat out like lukewarm water.


The world spits people like me out. It always has. I'm defective, abnormal, not smart enough, too lost, hopeless to learn, damaged goods, unloved, unwanted, co-dependent, have anxiety.... Need I add more labels?




I am, or at least was a broken person. I know Christ put me back together yet why do I struggle with where I'm broken? With the scars that remain? With the wounds that haven't healed yet? Heck, I'm sure I have wounds I am unaware of.

Case and point, I was in my eighth placement when I accepted Christ. Some of where I had been I had been more than once. October 1996 I had been at my last group home for a little while. I was ward of the state. Indiana owned me. Yet that first year at the group home was one of the best of my life. Several events happened that first year in that changed me forever. Yet it wasn't easy being in a house full of other girls that you had to at least tolerate. It was also the first year I found at teacher who refused to give up on me. Two of them actually. They were the first ones to not give up yet it took me till late 8th grade and really, early 9th to find someone who wouldn't. They were my band director and a math teacher I had. I also had her for one other subject. One staff member at the group home made a scrap book for me but all too often, I felt like they wanted nothing to do with me either.

Nobody up to that point wanted anything to do with me. They only did because that's what they were paid to do. Even when I was sent away to placements each time, I was just merely tolerated. Another point. The last "psych ward" I was at, I was 13. All of the girls on there had what they called PCP's. Not Primary Care Physician (Though we had those too) but it was more like Primary Care Partner or something like that. Everyone on the boys and the girls side had one who was willing to take them on. Nobody wanted me. Not one. I would ask staff if they would be my PCP and all said no. Other girls got to go out and do things with their PCP if their level was high enough but even when I was on the highest level, nobody had anything to do with me. One lady who worked on the adult wing adjacent to mine about a month before I got out became my PCP. She told me she did only because she felt sorry for me that nobody else would. Though I rarely ever saw her because she did work on the other side of our wing but also because she worked night shift.

Story of my life.....

Yet graduating high school, all I wanted to do that day was look at everyone who had ever or still was in my life up to that point, give them the bird and say, "Proved you wrong, didn't I?!" (I wouldn't do that now but at 17, almost 18, I sure wanted to.)

Yet people still don't want to have anything to do with broken people. Broken kids become broken adults, one way or another. So instead of trying to reach out to these broken kids while the kids still have a chance people would rather not be bothered. They would rather focus on the kids who are doing well, popular, the star on the team, etc. The kids who are the black-sheep in society are largely ignored at best and at worst, wind up dead. Just look at the amount of older children especially in DHS care with nobody willing to adopt them. So many kids age out of state care with nothing to say for it, and often either they learn to fly or they wind up dead, prison or homeless. Many of them are black-sheep in the eyes of society, often by no fault of their own.They are black-sheep simply for existing. Some are lucky to get adopted yet many are not. The older the child is, the less odds they have of ever finding a family that will love them. Sometimes the kids who do have a family are still a black-sheep to not just that family but to everyone else around them. So many excuses for why yet still excuses. No child deserves to be treated like that.... NONE!

Yet so many are blind to see it and or intentionally refuse to see it, let alone do anything about it. Why? Sadly even many who profess to follow Christ do this. Yet that's the opposite of what Jesus taught. Aren't we to be like Jesus? Would you rather be a Pharisee instead?

I still am a black-sheep but now I try to embrace my isolation and life of being "scum"to most everyone else. By being that, I don't have to live up to expectations like those who are in the limelight do. I get broken promises still all the time of people saying they will be there for me, mentor me, be "a mom to me" yet every single time, they all run. It never fails. As soon as they see anything, and I mean anything within me, all I get is excuses on why they can't call, text, meet or whatever. I'm poison to them.

My first Easter playing my flute again after not playing in over six years. Had not played a piccolo in just as long. This song was one we were doing. One evening we were doing rehearsal and the one other flutist was late so I had to play the piccolo part. I was not prepared and botched it bad. I was called out in front of everyone for it. Just after I got called out, the other flutist arrived and said she can handle it and everyone waited on her to be ready. It was after that night that I put the piccolo up forever. I gave mine away and have not played it since, minus one time I borrowed it. It was also that day I decided I will never play first part again because apparently I'm not good enough anymore and if I was going to botch something, I refused to look like a fool for it.

See the struggle? If I'm poison to all around me, then why does God not see me as that? Why has God not brought a "Paul" to me if I'm not poison? Everyone else who has said they will be a "Paul" gave up and ran. ("Paul" explained) It has NEVER failed....

Makes me wonder though too.....

"I don't wanna teach these bad kids!" That was a statement I heard recently said from a teacher about teachers being given options in what classes they will teach. Often they don't want to do certain classes and will say it like that. Now, in light of that overall schools have come a ways in isolation vs inclusion when it comes to kids who need special education needs on various levels. If you put my generation next to the generation of my children, education in the realm of inclusion has progressed. Yet if we still look at the "trouble" or "stupid" or "disabled" kids as kids that people don't want to be around and or teach, then we still have a LONG way to go..... 

We've come a long way from the lock-up rooms in classrooms and teachers smacking yardsticks on desks making fun of kids for whatever they can come up with. Or have we? "Zero Tolerance" is anything but.... Bullies get away with everything yet kids are dying by suicide every day. Even in Australia, kids are blamed for how other kids treat them. There's no accountability.... Okay, there is some accountability but nowhere near enough! Often it takes a story going viral and or being blasted on the national news to garter any attention, and often it's too late for the victims.......

Even adults avoid each other, through cliques and what not. Think high school. Seriously! It happens even among the old people. Just open your eyes and look around you in any social gathering. You see it don't you? You are either in or out. I say STAND OUT!


We can encourage kids to eat Tide pods in a challenge fad but we can't encourage kindness and compassion among our own species?!?!?!

We got a serious problem people.....


"Outcasts do not bring their problems on themselves. People want to pretend that if a person has no friends that it is a person’s fault. But it isn’t. Feeling invisible and insignificant is something that no person should ever feel." source Yet so many do....


We as a society are only getting colder to it too...



My teacher once told me if I made it less obvious that I had one hand, more people would like me.
~ Megan C. ~
source





"she faces a world where most people do not presume competence. A world where people will talk to her as if she were a child, with condescending and patronizing attitudes meant to be “nice.” I am afraid the friends she has will be celebrated as “extraordinary” because they have befriended the kid with a disability and not because she is the friend who is funny and kind and fiercely loyal." source

The mom said she wished someone, anyone had ever told her this: “If she ever gets teased because of her disability, I will make sure she knows how valuable and wonderful and gifted she is, no matter what people say.” I wish the dance studio had said, “Sure, bring her over so we can watch her in class and see how she does.” source




"We know people with disabilities have higher unemployment rates."
source



Two examples shared on the Mighty said,



“People still assume and think that I’m not capable of anything! And if I try to tell or prove them otherwise they ignore me anyway. And I am 33, got Tertiary Qualifications but can’t even get employed because I’m in a chair and don’t look ‘normal’ to the world.”
— Lize K.

source

” I [use] a wheelchair. I’m proud to say I have my high school diploma and a college degree. However, when going into a job interview, do they look at my credentials? Big fat nope! They look at my wheelchair’s credentials! Which is odd, being that my brain is in my body, not my chair.”
— Rebecca S.

source


The words that stuck out the most were:




"How is my daughter supposed to shine when she lives in a world that continually tries to snuff out her light?"
source





It's up to us to act like Jesus taught. We were COMMANDED to be like Him. To LOVE like He loved. To have compassion and mercy and grace on others. Yet even we are like "every man for himself" which is NOT what was taught! So, do we REALLY follow our faith or do we make up our own rules?

"When people think you have it all together no one ever checks on you to see if you need help. So you feel alone and like your drowning but you just keep on faking that smile like everything is ok."
~ Kim O. ~




Yet even then some people still have nobody.... Be that somebody for someone.





I took one of those spiritual gifts tests recently. Mercy was the highest followed by Faith and third tied with Encouragement and Discernment.

Yet I know I was created with a purpose. I may not know really what for till my death but I'd like to at least bring meaning to those around me. I overall live an isolated life. Especially in recent years. Yet I can see where those four fit me. This journey of mine, from how rough it started through childhood to my early adult years to the special needs parenting journey now has taught me most of all, compassion through the stories of others. The desire to know why people tick the way they do, the desire to have my story help someone else, even if I don't know it has. The desire for my kids to know I did the best I could with everything I had to give. That I never gave up.....

I teach my kids how to treat others, how to have empathy and compassion, especially for those "worse off" oh and I spend hours helping my school age kid with homework and reading. She's on honor roll and has been almost every single grading period for years now. I've been told by several medical professionals throughout the years that my school age kid would always struggle in school. Yeah she struggles but thanks to her IEP and hours of work at home, she's making it. I think I'm doing my job. My children have learned and continue to learn to defy the odds given to them. Their medical journey is complex and always changing yet they blow through all the odds and barriers that others put on them. When I get told that I'm one of the "rare" ones who advocates yet also researches for my own education, I take that to heart. My children are taught to do the same.


So maybe I really will hear, "Well done, my good and faithful servant!" on the day I face death.... Even if the only ones I impacted with my life are my two children and husband.

Blessings!
~ Special Momma ~

Monday, January 1, 2018

Reflections

So many thoughts in and out of my head as I write this up. What a year 2017 has been..... As it starts to wrap up, I get reflections in my head but this year it's even more so than it has in a while. I went into 2017 hoping for a stable and no surgery year. Well, at least no big ones.

I went into 2017 figuring all would certainly not be perfect in the medical world but at least maybe we would stay stable in Dallas as well.

All was stable till we went to Dallas in March and on the way home I got a call saying any increase in headaches and we were to come back to Dallas for at least ICP testing and likely another cranal vault. That was just the beginning...... The motion sickness out of my son was trying to pick up again so anytime he would cough in the car, I expected pukes and hoped that I had a good change of clothes, lots of Lysol wipes, puke bags or at least an empty cup and a very patient and forgiving daughter that would catch for me while I drove.... That went on for months. It was our normal.
Summer rolls around and so far so good. No worse issues out of my daughter and my son was doing good beyond occasional motion sickness. Not far into June our world changed forever......

New insurance. Thus the war was on again to keep Dallas. We had these fights some over the years but nothing like this. Ten years of documentation accrued plus the three years worth for my son all gathered. EOB's and so much more. All to provide proof of continuity of care for my kids. Many phone calls with case management of the new insurance, doctors in Dallas and the pediatrician. I had a small army fighting and praying. We had hope. My son was due there soon, we had the Ronald McDonald House set and waiting to know the day of travel if we had a room or not. I had the name of our frequent flyer back-up hotel ready just in case like I had for years.

Than all crashed.....



August 30th, almost a full month since insurance has been switched, we lost the war. It was probably the hardest call the pediatrician's nurse had to give us. I bawled...... I did. In all the years of having that clinic see us, that was the first time they had ever heard or seen tears.

Though also which I know is how the medical world works, as soon as I had told Dallas what had happened and that we would no longer be able to travel, I have heard nothing from them. I have however been in email correspondence with the cranio doc we had and I have updated him on how things have gone since. I have gotten a few replies.


Yet here it is months later and in a sense I still grieve. It sounds nuts but to talk about Dallas with good memories yet then remember it is no more still stings...... I won't miss the traffic though!




I also grieve in that we'll never see the Ronald McDonald House in Dallas again either. That place despite so many stays, had many good memories of the kids playing, thriving, the families we met and more.


Despite that I have more confidence in the current team, especially thanks to how they handled my son's last surgery that we were NOT planning on, I do have greater respect for them as well. I only wish now that Children's can do a better job about the appointment center making timely appointments. A six month follow-up should not wait to be scheduled till past that six month mark..... The kids were SUPPOSED to see their neurologist every six months but lately it's been every 9 months or more because people can't get things done right....

So much more has changed as well. I've blogged on this in the past so I won't get into it much here but my social life is pretty much non-existent. It's never been much since college anyway but even less in the last few months. Both real world and Facebook. I think I'm liver sauce because most nobody likes that. Many broken promises and people giving on me over the years, even recently. I'm used to being a loner now but sometimes the memory of what I once was shows its ugly face. People don't want to hang out with me for whatever reason and I've accepted that. Usually...... All I need are those that are willing to accept me for everything that I am and my household along with those I am around at Celebrate Recovery and the rest can keep their Chick-fil-A sauces. Link


"Not being invited to the party or out shopping or just hanging out with your friends hurts. And both my kids (and I) have experienced that feeling.
I hope they grow up to understand what this wise woman knows—You can’t be everyone’s favorite sauce so don’t try! Thank you Amy for these wise words—"
~ Melissa Blatt Lambert ~

(Written by Amy Weatherly)
In & Out Beauty by Amy

“So, a couple of friends and I went and grabbed lunch at chic-fil-a a couple of weeks ago. It was delightful. We spent roughly $20 a piece, and our kids ran in and out of the play area barefoot and stinky and begged us for ice cream, to which we responded "not until you finish your nuggets," to which they responded with a whine, and then ran off again like a bolt of crazy energy. One friend had to climb into the play tubes a few times to save her 22-month-old, but it was still worth every penny. Every. Single. One. Even though we were all wearing stretchy workout pants and headbands to hide our greasy hair, the staff still refilled our sweet tea. With a smile. And extra ice. And nobody stared when our kids screamed and squealed and acted like tiny fools. And everyone said "My pleasure," even when they had to sweep the mess of crumbs off the tile floor that our precious tyrants left behind.

I just love that place. The only way they could make it better, in my opinion, is to add babysitters, but I won't push too hard for that. I'll leave that one alone. Because, I dunno. Maybe that's a lot to ask of an establishment that sells $6 spicy chicken sandwiches out of paper bags and plastic trays. Maybe. Or maybe I'll write a letter, I don't know. I need to mull that decision over.

So anyways, we are eating. And I look at the half-eaten dipping sauces spread out on the table before us. I have chic-fil-a sauce, because, let's be honest, it's the best. Someone else has Polynesian, and someone else has good ole, classic ketchup.

And I laughed, because, 1. How could everyone not like the chic-fil-a sauce?!?!? I mean, seriously and 2. It reminded me that everyone is different, and everyone chooses differently, and what everyone needs varies. So I probably shouldn't take it so dadgum personally when someone doesn't like me, when someone doesn't want to be my best friend, when I feel left out or excluded. I mean...I can't do it. I can't be everyone's chic-fil-a sauce. And neither can you.

For some people, you are going to be too salty, and for others, you are going to be too sweet. For some, you will be too bold, and for others, you won't have enough flavor. You will be too much and not enough for some people's taste buds to handle and THAT IS OKAY.

That is soooo okay. God didn't make you to be loved by everyone. He didn't make you to be one-size-fits-all and generic and boring. He did not send you to this earth so that you could please all the people. He did not create you to be popular or to be invited to all the parties or to be included in every group text. He made you to love Him, and to follow Him, and to carry out His very specific purpose by being your very own distinct flavor.

Your flavor won't be for everyone. Take a deep breath and learn to be okay with that.

And the next time the devil tries to attack you, or make you stumble over the vicious lie that you are less than, or insecure, or like something is wrong with who you are, because you are feeling rejected, or alone, or unliked, repeat these words. Scream them if you must: I CAN'T BE EVERYONE'S CHIC-FIL-A SAUCE. And then just keep on running the race God has set out before you. Run it hard. Run it good. Run it long. And run it in your very own style.”


Easy to do sometimes, other times not. Often not, right?


So I hope that as we go into 2018, no surgeries, no changes in quality care for my children, good health and that I accept whatever fate has for me, even if that means I keep being a black sheep in the world of "normal" sheep...... Myself and my kids will be stronger for it.

I hope though too I can find out in 2018 why my son keeps dealing with hypoglycemia without warning.... It's not often but often enough to keep me on edge to watch like a hawk and not feel like I have to test him all the time. I don't, but only when he seems "off" yet those that know me, know that just waiting isn't good enough for me. I wanna know why and how to fix it.



So anyway, here's to 2018.....




~ Special Momma ~

Monday, October 30, 2017

Winners

Danielle Steel, one of my favorite authors..... I'm reading one of her newer books called, "Winners" I think it'll be a favorite. Malice and Accident are two others.


My world is medical. It's what fate decided for me I guess. It's not what I planned, what I planned first was being an entomologist, then a music teacher, then a therapist for abused kids, then life chose my fate.... Even once we get past all the stuff with either of the kids, I'm forever changed. I'll forever know what certain terminology means. Someday I'll likely work somewhere in the medical field now.


Even now as devastating losing Dallas has been, a lot has arisen from the ashes. Without spoiling Winners, it spoke many volumes to me. Some of the quotes from the book will be here but in many ways, I am like Bill, the father of Lily. Bill had so much anger and denial about not just what happened to his daughter but also anger for a while at any neurosurgeon who disagreed that Lily will walk again. Mine was Dallas, that nothing was better, I hated the new insurance company for causing this disaster in our lives and so much more....

Winners, even though it isn't finished, (1/3 left) really has touched me. I don't know if it's a matter of how "brave" everyone in the story is, or where I am in our real life journey right now or both. I want to share a few segments out of Winners that really resonated with me.

"I'll introduce you to my friends when they come to visit. The kids from my ski team said they would come by too," she volunteered, and Teddy looked skeptical. "Don't count on it, Lily," he said gently. "People mean it when they say it, but they're busy in the real world. They stop coming after a while. It's like we're shut away, and they forget. Whenever people leave here, they say they'll come back and visit, and they never do. And I think it makes people who don't have injuries uncomfortable to come here. It freaks them out to see us and realize it would happen to them. Don't expect your friends to come here too often. They just don't. I've seen it a lot in two years." He sounded philosophical about it, and he didn't want her to be disappointed and was sure she would be.

Another segment was:

He had been right about her friends - they never came to visit her. They always had an excuse not to, and instead of calling her, they texted her, "Sorry, I can't come by today... see you tomorrow." and tomorrow never came. "Oops, running late, catch you next time." "My mom won't let me go out.... my car broke down... I have exams... I have practice.... My dad won't let me drive the car." They had a thousand excuses not to visit her in rehab. Maybe it was just too hard for them, but it was a lot harder for her. It was what Teddy had predicted at the beginning. He had seen it happen to others in the past two years. He had seen very few friends come through and stick around. And Veronica, her best friend, was the worst offender. Lily got the feeling that she was trying to be Lily now, on the ski team, and with their friends. And she had seemed so fake the one time she did come to visit. She didn't even feel like a friend now, just someone Lily used to know. (Lily's boyfriend cheated on Lily while she was in the hospital and broke it off while Lily was just starting rehab also.)

One more was:

Thinking about The Lily Pad filled a void for Lily, and distracted her from the fact that none of her friends were coming to see her. Besides Veronica, a few of her classmates finally came once, and were so shocked to see Lily in her wheelchair that they didn't come again. They didn't know what to say or how to handle it so they didn't come at all. She talked about it to Teddy, but not to her father. She was too embarrassed to admit that she had no friends anymore. She felt like a total loser and as though she had ceased to exist for them. And in a way, she had. What had happened to her was just too shocking for them to absorb. Teddy was always sympathetic, and he was her only friend now, at the toughest time of her life.

Teddy was abandoned by his parents after he became a quadriplegic and was left at the Craig facility.

I remember anytime I left for a placement, I was told friends (What few I had) would be in touch with me, and especially when I moved out of the last group home and went back home and to the school district I had been in for a good while prior. Never happened. I would call them but they never called me and finally I quit trying, especially when all I got was excuses on why they couldn't talk long, if at all. Even after moving to Arkansas, except for once in a great while, a Facebook comment here or there, there are two I hear from still that I knew then.

Then the medical world changed a lot too. The older I get and the longer this medical journey lasts, the more and more silent my world becomes. The social life, what little I had, is barely anything now. Yet early on, I hated that. Now I sometimes cherish it. No drama! Sometimes I hate it still though.... I only wish the phone calls with insurance, clinics, and more was better sometimes. Not all are bad but sometimes even that is tiring, especially when people don't wanna listen or realize how serious something is.....







In a way it may sound corny but this is exactly the way I have seen how this change in our medical world was. Except my island wasn't goofball, it was Texas. I see where this devastation would fit many things, for different people. For our most recent, it being that we lost our team in Dallas due to insurance.

For a while now Inside Out has been my son's favorite movie. All he wants is Bing Bong, the imaginary friend.



Yet the other day, watching this for the millionth time with him, watching the face on Joy as that island fell and disappeared, made me think of this change in the journey.



I'll be honest though, my personality is more like Sadness.... Yeah, as if that was never noticed. lol Yet sometimes I think too much too. *Imagine that!* So yeah....

Yet if you have seen the movie, at the end Joy and Sadness worked together to make a new island. That's what has happened here in a way. It's scary though honestly... Yet I'm starting to see that maybe, just maybe there is hope and restoration in this horrible mess.

You see, my son's MRI looked great. All four doctors (Two we had in Dallas and the two new ones) said it did. Yet almost like it was a hunch, the new craniofacial doc had us go down the same day for a CT scan. That was fun..... Insurance wanted to be stupid about it and also all my son did during it was cry..... Though at least we were able to get the imaging needed. Now though the MRI was good, the CT was not. It showed fairly significant copper beating and more...









THEN not two weeks after the CT scan and plans to do something in a few months about it, we find out he has grade 3 papilledema. Oh boy.... Never saw that actually happen in either of my kids, though I knew what it was.... Game on though because things better get done in a timely manner now. If Dallas could have gotten my daughter's surgery last surgery done in 2012 within a month of things going south, surely that could be done in a smaller state and everything, if not even better timing.



via GIPHY



It took a couple of days of fighting scheduling stuff and me about to do the momma bear stuff to get all settled. I always stayed professional but I was firm in as late as mid December was not acceptable. I was told at first that it may have to be then.




We do have a surgery date finally. A lot to do between now and then though....

Yet even last night as I'm tying this part up, a song came on in one of my playlists that I listened to a lot before and during the time of my daughter's last surgery in Dallas. Let it burn. Yet the epiphany I had listening to it, on repeat for a while.


I watch the city burn
These dreams like ashes float away
Your voice I never heard
Only silence
Where were you when our hearts were bleeding
Where were you? It all crashed down
Never thought that you'd deceive me
Where are you now?

How long can you stand the pain?
How long will you hide your face?
How long will you be afraid?
Are you afraid?
How long will you play this game?
Will you fight or will you walk away?
How long will you let it burn?


I watched my security in Dallas burn down. I watched it fall, it came down with a heavy crash covered in ashes. I cried out to God with tears, anger, despair, all of it. I felt like all I was hearing was silence. I felt like God deceived me, punishing me, going to make my kids suffer.... Yet all I did was hide behind my fear and anger..... My world crashed and there was nothing I could do about it......

Just like Bill in Winners.... Helpless against the waves that continued to crash into the wreckage left by the storm....

I have no choice though now but to hope.... Hope that my children will get what they need.... Hope that in the frustrations with these changes that I don't scare off the new team, that in fact I can show them that I'm an ally. Just like I was an ally with Dallas. Yet even with Dallas I was not afraid to speak up. I hope most of all, that as the unknowns approach, that this team will care for my children as well as Dallas did, if not even better....

I sure am going to miss this skyline though..... Nothing I can do about that.....


I'm going to have to get used to a new skyline at night, if I get to see much of one. I was one of the lucky ones to get this view the last two nights being admitted with my son following his decompression surgery.... It's a view I'll never forget.... It was an even better view in D-10 than it was at the Ronald McDonald House. That's a place I will miss too....... For many reasons....

The rules here are so different and our chances of ever getting a room at the one in Little Rock are almost nil, let alone getting for more than one night, no matter the reason, inpatient or not. Maybe part of that is we live over two hours out from the Little Rock one, not three and a half hours, which is about the farthest one could go in Arkansas to get to Little Rock. So, as I will always, ALWAYS support that charity, I will miss Dallas for several reasons.....

Too bad insurance doesn't cover hotels as secondary placement to the RMH.....

No matter what though, by the end of this journey, we will have won.... I just wonder how disheveled I'll look at the end. I'm definitely not model material now as it is and never was.






Blessings!

~ Special Momma ~