The background music was a song called, Sleeping at last - Saturn.
The cello is my favorite string instrument. It's so beautiful yet is also overlooked for the violins.
Yet it put me in a somber mood..... My son had his sleep study post decompression recently and the results are really good thankfully. I don't have specifics though yet.
It also made me think about the Conquer Chiari walk last weekend. There was a poem shared there that was the most lovely thing and I'm going to share it here. Please if you share it, give credit where it's due.
Thanks Andria!!
"This was written some years ago by another CCWAA organizer, but with her permission, we (along with other sites) were allowed to change up the location and such to make it fit for any walk location. So it say "Northwest Arkansas".
The Reasons We Walk
By: Cyndi Vanek, chiari survivor and
walk site organizer
We walk
today for those children who don’t yet know their fate. The word “chiari”
they’ll one day learn and also learn to hate.
We walk this
walk for mothers who try to hide their pain and try to teach their children how
to dance beneath their rain.
We walk now
for the parents who feel completely stressed while at their child’s bedside
feeling totally helpless.
We walk for
all the siblings who have to act grown up and sometimes take a second place
when times are really tough.
We walk
these steps for patients who are told that they look fine despite the meds they
have to take to get them through that time.
We walk for
the many who suffer in silence still today, being told chiari is so rare,
thinking alone they’ll have to stay.
We walk so
at our next appointment we won’t have to spell the word. Because in Northwest
Arkansas, Chiari is something they’ve now heard.
We walk for
you who’ve loved us even through the hurt. Who’ve joined us here today to wear
your chiari t-shirt.
Mostly we
walk these steps today holding another’s hand. We will continue to walk these
steps simply because we can.
We walk for
the volunteers, sponsors, donors, and our friends who’ve made today all
possible and are with us till the end.
We walk
because we’re tired of having to hide what’s wrong. We need better treatment
options. We’ve been guinea pigs for far too long.
We walk
because we want better for our own daughter or son. So God forbid they ever
hear “you have Arnold Chiari One”.
We’ve
organized this for you because our families are OK with missing us for months
while we plan this one September day.
We’ve walked
for years now together. We hope to meet again. We’ve shared our stories, broke
bread, and met new chiari friends.
We walk
because you hold our hands to catch us if we fall. We will continue to meet
here yearly until we conquer chiari…. Once and for all!!
Less than a week till the MRI, scananxiety as it's called, yet for different reasons than where that word started. I have no idea or guess as to what it will show to be honest. What the syrinx will look like, if it's still there, or anything else that I know we have seen there. And to top it off, the computer I use to look at these scans myself I'm locked out of thanks to the most recent Windows 10 update.... It's looking like I'm going have to format it and start fresh since nothing has worked to try and get back in. I'm ticked...... Yet we don't have a copy of 10 since we upgraded from the preinstalled 7 and that no longer works so..... I hope I can borrow something to at least get a few images off with....
I try to not have my children see the world that I sometimes struggle with. These pics are their world (Besides the people they love)
Yet hearing some of the stories I do, it's hard to try to keep looking at everything in a positive light like my kids do. I really need to learn to be more like them.
Today I have had Metallica playing in my head.... Nothing else matters is a favorite.... I've also had more Audiomachine playing.
I was encouraged by one of the ladies I know to share this so I will....
I'll admit I have always been a control-freak in many ways. Co-dependent as well. I gotta fix things that are broken, things that are wrong, out of my control.... I gotta fix it. When things are in chaos or so many unknowns, my anxiety gets high and I also get angry easily. Yeah, I admit it. I didn't used to be this bad.... till our journey began. My daughter was three months old when it really started.... The day we went to Dallas and back in one day, my world changed forever..... I had no idea what we were in for.... Nine years later I still wonder..... With my son, we have more to watch for with him. More to fear, more to learn, more to watch yet try to capture in those thoughts and fears from completely taking over. Yet I have always fought this. If I don't fight for my kids, who will? Nobody. That's my job as their mother. So..... now comes in where I am planner, coordinator, warrior, advocate, and all that goes with it. When does it become out of control though? To the point where you get told that you don't have enough faith or trust? Who decides that ultimately? There are days where I am good, no battles, sun is out and the ocean is calm. There are other days where I am in a war that is just me against the world and I am the only one to slay a dragon alone, the hurricane is upon me and I just can't hold my ground against the storm and I'm holding on by a single finger about to be thrown into the abyss. Most days are somewhere between those. Often I'm toward the stormy side. I have learned to handle most of it. Though talking about it gets harder to do as I get older. I'll explain that in a bit.
So often we are told we are not good enough, worthy enough, Christian enough, we sin too much, we don't have enough faith, we talk too loud, we are too outspoken, etc. We get told this stuff but more times than not, we struggle within ourselves with this "being good and worthy enough" business. I've been told most of my storms I bring on myself. I have been told to shut down this blog and Caringbridge and quit being so public. I have been told to quit posting on Facebook because I'm losing "friends" and being unfollowed by many for posting my thoughts. I chase everyone away with what I say, I'm told. I already know this post will get some words said to me about sharing too much.... As if we don't struggle enough with trying to be silenced.... To a degree I have caved. I don't talk as much to people, granted days often would pass before anyone would call or text me unless they wanted favors anyway.... I don't post as much of anything other than shares on Facebook and anymore I'm more content staying at home all day than wondering why so and so gets to do this or that and I'm not. Sometimes being a hermit is better. Even when I am in a group, I struggle with what I should or should not say or share so often I'd just rather keep quiet. Often when I do say something, I feel like I'm out of place or the oddball of the group which I figure I'm improving the conversation staying silent. I figure those that give up on me weren't truly a friend anyway. Almost everyone gives up on me at one time or another and they are gone just like the others. It's only a matter of time. That I have learned.
I have always struggled with how some things are okay in the Christian world and some things are not yet everything is is truly supposed to be black and white. Good or bad. No middle. We humans create the gray..... When I ask and bring that stuff up, I'm told to mind my own business and deal with my own sin and that nobody's perfect. That's not the answer either. I think that's when we all need to think about what we are doing and if we are right with God or not. Individually, with an accountability person and make sure we are praying about this.
I didn't accept Christ till I was 14, just days before we won state in marching band that year. It was October 21st, 1996. I was living in my last group home. I accepted and tried to change for the better but I don't think I truly started that till I was 19. I was doing "good" except still struggling with anger and cussing issues. I listened to Korn, Ozzy, Linkin Park and stuff like that in high school. I read Stephen King novels. I played violent video games. I didn't talk the cleanest, I tried to fit in to at least have some friends in school, I would get frustrated at work and called names sometimes over stupid stuff, not at people but in general. I still tried really hard to be good, I did. I even went to church. It's not about being "good" though because we will fail... I still try to be good. Yet fail. I hear about it all the time when I mess up but not when I'm doing good. And yeah, I do still read the occasional Stephen King, along with Danielle Steel, J.D Robb and other crime novels I love the crime novels and medical mysteries/stories. I miss Unreal Tournament the most as far as gaming, I do watch some shows and own movies that have some bad language but I don't watch them for that, I watch them for the story. No matter what, I will still struggle to keep my mouth shiny clean, especially if upset or freaking out..... Yet I also read Christian books, like Gods at War. (Current study)
I admit I struggle too with if God did accept my prayer for salvation. I believe I am saved, truly but believing and trusting that God really loves me is a struggle still......
Does this make me bad? How many are the same way? Am I that bad? How does God forgive me for my failings yet our fellow man holds more condemnation and stereotypes in any faction of life?
I have also been in what's called Celebrate Recovery. It's not just for chemical dependency. It's for any hurts, habits and hangups. I go because first I was there for just anger..... In the year I have been there, I have seen there's more to it. Anger, anxiety and co-dependency and it all intertwines with me. I feel most at home when I am there. I can share anything and know that it is safe to share and I will not be judged for what I share and say. After stuff is over then I have had sometimes where 1 or 2 would approach me and we talk about things, we listen to each other. I get ideas, improvements, help..... We will always fail because we are not perfect but through GRACE and MERCY, we are saved through Christ. And we are then commanded to love others this way. Love doesn't mean doormat, it means to treat others with love and compassion, even if we don't agree with what they do or say. GUIDE others who are doing wrong, help them, don't beat them down but pick them up and offer to help them through it. It's easier to just beat people down and tell them how bad, evil or whatever they are. This world is good enough at doing that, why don't we stand out and make a difference instead.
I truly believe this is how we bring others to Christ. Teach the Bible, teach the "rules" and all of that. Teach how Christ changes us. But also teach grace, compassion and mercy. Show yourself to be that way too, even if dealing with someone or something is hard. Don't talk if you aren't going to walk it. We all mess up, let's all pick each other up despite our messes and help each other walk the right way instead of beating the "bad" ones to a pulp and walking along with pride figuring "We aren't like that person so I'm fine". Let's all be humble. None of us are "fine"
Why can't we always be like this? I know I still have much to learn so maybe I'm just ignorant...... We look around at others and think they have the good life, God has cursed us because we have this or that going on type thing. So easy to do.... I have gotten caught up in that.... Even Job got asked if he was cursed or what he did to cause all that was done to him. Yet look how many millions have been changed because of Job's story. God got glorified through Job's suffering. God can be glorified by our stories too. God has always been the victor even if in the moment we don't see it. Looking back, I can't explain many victories otherwise.
Coming back from the sleep study, I noticed this grasshopper on my side mirror as I was leaving Little Rock. It was still there but moved a little by the time I was almost home.
Here I was, going 70 down the highway and this grasshopper was holding on for dear life. Later on, it moved even in the wind to inside the plastic area under the mirror itself. I kept watching it off and on. Then a thought occurred to me. Through the wind, the storm, the darkness, the flood, God watches us too to make sure we are still hanging on. This insect, what most would see as worthless, hung on for dear life for well over two hours. What a feat that was!
The Sunday night before the sleep study we had a night of worship with several local churches. Choirs and instrumentalists including me, we all played. I kept watching a young man I presume was Autistic or Asperger was so into the music. The last song, he got up before anyone, he started raising his hands to the music, swaying with it and finally jumping for joy in the latter half of it. By this time, everyone else was standing but most were just standing, not singing or anything, just listening. Yet this young man, had the outward joy in his heart. I went up to his mom right after we got done and told her how much that touched me. I told her it is those with special needs who will conquer the world. It will be them, the ones that so many see as different, insignificant, worthless, whatever, WILL conquer the world. She got tears in her eyes and I almost lost it too..... Just like this insect hung on for dear life, so shall we.... Yet to see our children have joy no matter their trial, should serve as a lesson to us too.......
Don't get so caught up in the little stuff, all the legalism, politics, political correctness, etc to the point that you miss what truly matters.
God Himself!
~ Special Momma ~
