Ordinary World

I think of RED's version when I hear that song but I know probably many think of Duran Duran. That is a song stuck in my head right now. Mainly the chorus:

But I won't cry for yesterday 
There's an ordinary world
Somehow I have to find
And as I try to make my way
To the ordinary world
I will learn to survive

This has been stuck in my head a couple of days now. (Red's version) My son's surgery is just around the corner, and appointments and more have been keeping me quite busy. In fact, I got his sleep study results back today. Not the details but enough. His central apneas were half of what they were at the last study and his hypopnea rate was much less as well. I'm glad yet scratching my head.

I'm thinking much about the surgery though at the moment. Before I had no question that it was needed now and yet as that dragon is breathing in my face, I think I'm starting to have doubts. Less than a week out and my brain isn't shutting up yet. And I know it won't.....

It will also be the first birthday for me that I have had to spend it in the hospital with one of my children. That doesn't bother me nearly like the unknowns of how all will go and how my son will do.

The all too familiar sights, smells and sounds are leeching into my head again. Yet this is unknown. I don't know this territory or anything and that in a way makes it harder to face. Second major surgery for my not two year old son. I don't know if we will still be in Dallas when he turns two or not but he will be too soon post-op for a birthday party. At least he won't remember any of this.

Yet I will survive, my husband will survive and my daughter will too. She of all people know what all of this means, even though she doesn't have Chiari.... 

"I can't escape the ghost of you." I can say that for the medical journey here too. Especially just before or just after procedures. The sights, smells and sounds linger, the ghost haunts me. I can close my eyes and sometimes just hear the familiar noises of the ICU machines, sometimes the smells just hit me when I don't expect it to and the dreams sometimes remind me of where we have been. 

My Ordinary World... Yet the world I'm in no matter what I say or do about it yet I do the best I can to choose to find the joys in it because it is way too easy to find the dark places....... There may be more darkness in it then I like but where the sun shines, really is bright. 

Credit

Blessings!

~ Special Momma ~ 

Special Olympics

It was my daughter's first year being able to do Special Olympics. She has gotten several medals this year but these two were from Friday and Saturday. She got gold in standing long jump and silver in the 100m dash. This was at State which is a three day event. Opening ceremonies Thursday night was amazing. Over 3000 athletes from all over Arkansas gathered at Harding University for this. It was truly an amazing experience. I had chills when they honored those who had fallen (passed) in the last year. The rock concert put on that evening was a lot of fun. My daughter and a new friend had a blast. I embarrassed my daughter by "dancing" in the balcony while her new friend was egged on by me and danced too. lol I got the "Mom, you are embarrassing!" look. hahahaha Our group was on the far left in the pic below. Black shirts. (I had to blot out faces)

During our time I did also meet someone who has Apert Syndrome. I wished I had talked more to him but he was working for Harding in the dining hall. Sadly I didn't even catch a name.

The rain on the first two days didn't stop these athletes, now the thunder did once but..... these kids were amazing. Yeah, I'm even calling my age group 'kids' because so many were. Yet I admired all of them, no matter where they placed, people cheered for them. They all were and are champions.

Getting to see how proud these athletes are of coming to State was truly amazing.

Getting to see how there was there no "losers" was perfect. I told one of the other moms there that I wish more athletics was like that.
Getting to see these athletes getting cheered on, picked up, guided, wherever, was such a blessing.

"Let me win.  But if I cannot win,
let me be brave in the attempt."
Athlete's Oath

I will definitely say this, as hard as this journey is sometimes, it is moments like these that really fill my heart as well. With Special Olympics there is no "different" because everyone is there for one common purpose. To be heroes and to have fun. That's what it's about. The hero within!

I can't wait to continue with this. I look forward to the day when my son can be involved too.

Blessings!
~ Special Momma ~

Inside Out

If you are a mom or dad, you probably just saw that title and thought of the Pixar movie. Yeah, that's kinda sorta where I'm going today. Admittedly we all can probably say we lean more towards one of the main characters over the others in our own personalities. Mine is anger. My daughter has played the Inside Out thought bubbles game. Anger cracks me up yet sounds like much like I would. Clip here  He really spazzes when you lose a level. I love his "I demand a recount!" saying.

Yet I also think of how anger can be good, really all of our emotions. Used right.

I also think sometimes of our lives working like the Memory Dump. Faded memories, dreams, ambitions,

Dreams, thoughts, memories forgotten, faded, no longer existing. When we see things happen that we know shouldn't yet there isn't anything we can do about it.... We feel like we should be able to hang on to so much.... Yet we can't.
We feel like we are trapped in our own "memory dump" where everyone has forgotten about us, we are fading away and yet with all the chaos around us, we are alone. We get to the point where it's us against the world mentality. We feel like we are drowning and everyone is watching.

But here is where they finally started working together.

I think that's where also in a spiritual way, we finally "get it" when it comes to working with God and His will for us....God knows, we don't "get it" at every bend in the road that comes.

Right now so to speak I'm enjoying the sunset yet the sunset also means darkness is upon me. Darkness not in depression but darkness as in the unknown.

My son has his second sleep study tonight and his chiari surgery is less than three weeks out now. His "quarantine" so to speak from the public starts about a week from now. Been there, done that but never done the chiari surgery before.... Cranal vault, x3, done that. Tubes, hearing tests, therapies, appointments, neuropsych, IEP's and so much more, done that. Know that, know how it works. This one is new territory. Never walked it, don't know anything of it, how my son will do or anything.... Hence darkness. The unknown. Right now I can still see what I'm doing, where I'm going but the sun is setting.

The walking path right now looks like this, hard to see ahead but at least a path before me. Once it is dark, all I can do is hunker down and wait it out.....


Yet God knows me Inside Out. That, is what I have to remember, in faith, that God knows what he is doing, even when I do not.....

Blessings!
~ Special Momma ~

Memories

I heard a song the other day I had not heard since high school. I can't get it out of my head the last couple of days. It's called Friends Forever. That day I had made a FB post about all of the stuff in my life that had happened in the month of May.

"Thoughts today since I heard a song today. Crazy how music takes you down memory lane, can depress or energize. This journey of my life has had some bright times and some really dark times. Many of my years I have had to claw my way to survive. I have proved wrong and defied so many who said I would have long been either dead, in a permanent psych ward or in prison. I am none of that.

It was about this time in '90 that I was sent to my first placement. I was 8.
It was about this time in '93 I was considering band and what instrument to play. My grandpa gave me a Artley student flute from his old music store a short time later. I still have that flute. I now play on my 461H Yahama though.
It was about this time in '94 I attempted suicide. The darkest time in my life... I spent my 13th birthday away from home. Not the first or the last. While in the hospital psych ward before going back to the one I was at when 8, I thought of many things of my so far life then and wondered if my life really was over, at almost 13.
It was about this time in '96 I was at my last group home getting ready to start marching band for the first year. It would be the best band season of my life. I would accept Christ just shy of six months later. (Days before winning state October 1996)

It was about this time in '99 I was ready to start my senior year and little did I know my dream of being a music teacher like my grandfather was about to be a faded one.
This time in '07 my daughter was a month old and I was oblivious to the journey ahead with her or the roller coaster that journey brought. July 9th officially launched her journey.
This time in '14 I was about to birth my son who has made his own rules in his journey from the start....
This time last year I was two months out from his first surgery and I already knew he was setting his own path through life. Muenke doesn't come with Chiari, let alone the rest we have gotten since then...
A month from today (I wrote it earlier this week) will be his second major surgery, a first for us in this realm.
A month from tomorrow I will be in the PICU with my son celebrating my birthday, somewhat....One month and one week from today and my son will turn two.

I am not dead, I am not in prison and I am not psycho. Growing up I constantly heard that I should have been aborted, I was too ugly to be worth anything, I won't amount to anything, "She will never be a effective part of society." and much more. I am NONE of that.

I have defied all odds and so will my children. I am not afraid to share my story and neither should you of yours."

Now this post included that but I will also include others. It was after I made that post in FB that I found that Friends Forever song. I have been in memory lane A LOT today. I have four total that I really talk to that I went to or knew in high school still. Two of them we only talk via FB at this point. Two of them I went to middle school with also and they remember the darkest time in my life and we have talked about that some since then.

My thoughts have gone around mainly high school. Winning state in '96 to having to switch schools the middle of my sophomore year, Solo & Ensemble years, playing Euchre during lunch periods, band competitions and pep band. Yeah, mostly music stuff. That was my life. When it wasn't that it was working at Wendy's or with the boyfriend I had at the time. I think back to a fool I was to be with him as he didn't treat me as I deserved but so often in life, we have to learn lessons the hard way.....

I know when I graduated 16 years ago (I didn't admit that) my dreams were definitely not what became reality. Most aren't. Most of us think we'll marry rich, a very handsome husband (wife), a job that pays a lot of money without a ton of work, etc. You know you did it too. I did go to college and got an Associates in Early Childhood Education. Figured that was step one to eventually work as a counselor for abused children, a play therapist is what I wanted to be basically. That didn't happen either. 

16 years after graduation and I am where I am today. I wouldn't change it. I would change some circumstances but not the overall journey. I have wondered though sometimes if we took different paths, where we would be now. What if I did get to be a music teacher? The child psychologist? The entomologist (bug scientist as I called it when I was 4-11) The microbiologist? Had I not married my husband, where would I be? That type of thing. (No regrets in marrying him by the way)

I think sometimes my brain starts a thought and takes off as if it was in the Indy 500!

Yet I think that one of my biggest wishes now is that my children can both be able to cherish the years they have ahead of them. Good and bad. I'm realistic, I know there will be bad days. The first day my daughter comes home crying over a break-up or my son upset over not getting onto a sports team type thing.

Yet as the journey has chosen them and us, I pray that no matter what comes ahead, my children will find joy no matter how many days they have, no matter if they outlive me or I outlive them..... I pray the legacy I have will be that of a mother who was always there for her children, never gave up and showed my children not just how to live in this world with Light but also to be givers of Christ's story of redemption.

The mountains and valleys that we have walked, the dark nights and the sunny days. The drizzle or the raging storm.... That's our journey.

 

That's what it's really about. How are we going to use our story, our darkest times that WE survived, the brightest times that we LOVED and use our stories to help others, to show how God brought us through the worst and the best to therefore use our stories to SHOW others Christ. We have times where we don't even act like we should. Our stories can share that too and how we got out of it.

That's what it's about.
What's your story?

Blessings!
~ Special Momma ~


More of my story is HERE

Shield of Faith

Since we finished our Fight Back with Joy study, we have been watching the videos for Pricilla Shirer's Armor of God. Wow!

Faith and trust has always been a struggle for me, which is why I'm going to blog about it today because I know I'm not the only one..... I have not heard one way or another over an update to the last big storm we had so I'm going to hope and pray it's over......

Last night was on the shield of faith. Pricilla was talking about how the Roman Army had their shields done and how sometimes they would soak them in water so when the fiery darts (Javelins) from the enemy hit, they would not harm each solder and also the water would put out the flame. The army while advancing would hold their 2' x 4' shield out in front of them. While guarding against an attack, they would hover behind it, full body so nothing would hit them. "The Roman shield—the scutum—was not the standard "medieval-esque" shield most picture in their minds upon hearing the word. It was instead a very large, slightly curved rectangular shield featuring at its center a large metal knob (called a boss).The scutum was an impressive line of defense. Because of its sheer size (some were three and a half feet tall and almost three feet wide), soldiers were afforded a great deal of protection from enemies. Because of its slight curve, it was able to deflect attacks without transferring the full force of the assault to the man holding the shield. Because of its boss, it was able to deflect even the more vicious blows and function in a limited offensive capacity as a means of knocking an opponent backwards." During combat from flying weapons, they would cluster in groups and form like a turtle shell of shields to protect each other. The Roman military had an inventive and very effective tactic that made use of their large shields. When enemies would begin firing arrows and other projectiles at the army, the soldiers would close ranks into a rectangular array—called the testudo, or "tortoise," formation—and those on the outside would use their shields to create a wall around the perimeter. Then those in the middle would raise their shields over their heads to protect everyone from airborne missiles. The result was a formidable human tank that could be stopped only through a tremendous effort.


You had to watch though because if a flaming javelin hit your shield and you weren't ready, you would be distracted trying to put the fire out to the point you wouldn't see the enemy advancing further into your area and therefore CAUGHT OFF GUARD. Fiery darts are a distraction to prevent the cluster of shields protecting those using the shields to stay safe. This allowed the enemy to advance further in battle and more easily overtake those around them. It's like ripping a section of the metal off the human tank and leaving that one section open to ANY vulnerable attack.

In the first pic they are all huddled together and in the second, they are using the shields for protection but also attacking with some of the men.

So how is a shield associated with faith? A shield guards, it deflects, it's the first line of defense, and it can incapacitate an enemy.

The main antagonist of faith is fear!! Fiery arrows of what ifs, how to's, when is, etc. Guilty I am.... WAY too often.... Even now with surgery day fast approaching, I am thinking much of this..... I have moments where I allow myself, realizing it or not to get caught up in all of the questions and fears and worries..... How is that showing FAITH though? I am weak indeed.......

BUT

Faith place is stepping into a place or situation where God has to step through to have it happen.
Faith is acting like something is so even when it is not so in order that it might be so simply because God said so.


Jesus is our partner, not our slave who does all of the work. We have to work too. We have to TAKE UP the armor, not expect it to be put on for us. Give your faith a job. Active faith is a shield! Take up the shield, put on the helmet, take the sword. These three require action.

Why do we have to work and prove our faith? Faith reveals a reliance on God. Acting in conjunction with God's Word shows our faith and belief that He is faithful and true! Step out on the water when you are told. It says less about us and more about our faith in God. We will never see the benefits of our faith unless we marry faith with action. That alone proves our faith.



Because He is faithful, we can have active faith! Promises are in our reach but we have to reach for them, act on them. Sometimes that chasm can seem like it's a million miles away and our arm length is only inches but that's where we WORK at this. We continue to ACT in faith.


James 2:20, Eph 6:16, Luke 5:1-11,
Eph 3:20

I encourage you to think of a time where God HAD to step in and make something happen. Something that you knew no human alone could have done. Think of those moments when you face the next storm that seems impossible yet is not.

All Things Possible is a favorite song that I should listen to more often as my own reminder...... Your story is NOT over guys. When we were going through the house buying process, that was my go to song. My son was just a few months old, Christmas was coming and so much more.... My eyes saw so many impossibilities in how owning a home on our budget would work. Yet GOD alone proved it. HE made the process work out.

"All Things Possible"

I will call on Your name
For there’s always a way
When You lead me
And when life knocks me down
I am not counted out
For You’re with me
And You’re with me
[Chorus:]
Even when it feels like the light is fading
And I’ve lost my way
Still I’m holding on to the One who’s making
All things possible
Even when it feels like my heart is breaking
Hold on, there is strength
Knowing I belong to the One who’s making
All things possible
I know mountains can move
I’ve seen what You can do
In my weakness
So my heart will believe
If I wait I will see
My God doing, what only He can do
[Bridge:]
My God is strong and mighty
My God is faithful
My hope is in the Lord
For He is able

Cling to your shield. Take up your armor and wear it always. No matter how much we get knocked down, we will ultimately have the victory because God will.

God's Armor	Know the Truth about...	Affirm key Scriptures
Belt of TRUTH	God: the Father, Jesus, Holy Spirit	"I am the Way, the Truth, and the Life. No one comes to the Father except through Me." (John 14:6) Deut. 4:39; Psalm 23:1; 18:1-3
Breastplate of RIGHTEOUSNESS	The holy and perfect righteousness of Jesus in those who are "born again" and filled with His Spirit	"Blessed are those who hunger and thirst for righteousness, for they shall be filled." (Matt. 5:6) Psalm 100:3; Rom. 3:23-24, 6:23; Gal. 2:20-21; Phil. 3:8-10.
Sandals of PEACE	Inner peace and readiness	"For He Himself is our peace..." (Eph. 2:14-15) Rom. 5:1; Eph. 2:14; John 14:27, 16:33, 20:21.
Shield of FAITH	Living by faith	"I am crucified with Christ:...and the life which I now live in the flesh I live by the faith of the Son of God...." (Gal. 2:20) Rom. 4:18-21; Heb. 11:1; 1 Pet. 1:6-7
Helmet of SALVATION	Salvation through Christ today and forever	"Nor is there salvation in any other..."(Acts 4:12) Each day: Ps. 16, 23; Heb. 1:3-6 For eternity: 2 Cor. 4:16-18; 1 Thess. 4:17; 1 John 3:1-3
The victorious Sword of the spirit: GOD'S WORD	God's Word countering spiritual deception and accusations	"...the Word became flesh and dwelt among us, and we beheld His glory...." (John 1:14)  Heb. 4:12; Matt. 4:2-11; 1 Pet. 3:15; Ps. 119:110-112

May I remember this always too, no matter how dark or stormy it is and gets..... May we all remember.....



Blessings!
~ Special Momma ~