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.

via GIPHY

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 ~

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 ~

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.....

via GIPHY

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.....

via GIPHY

~ Special Momma ~