Johnny Ray Ryder Jr
A mighty wind blew night and day
It stole the oak tree's leaves away
Then snapped its boughs and pulled its bark
Until the oak was tired and stark
But still the oak tree held its ground
While other trees fell all around
The weary wind gave up and spoke.
How can you still be standing Oak?
The oak tree said, I know that you
Can break each branch of mine in two
Carry every leaf away
Shake my limbs, and make me sway
But I have roots stretched in the earth
Growing stronger since my birth
You'll never touch them, for you see
They are the deepest part of me
Until today, I wasn't sure
Of just how much I could endure
But now I've found, with thanks to you
I'm stronger than I ever knew
There are days I feel that and days I don't... Just being honest. My last post I didn't, today I do. Mostly. We had another pain clinic appointment for my daughter today. Once a month we drive three hours one way to do these. It gets exhausting. Yet blessings are in our trips too. Our famous view of Little Rock.
We were also the customer of the day at the Chick-Fil-A we always stop at once in our trips. I know half of them by name in there and most of them know who we are. Yet the day in and day out of many days is tiring. Though my children are sooooo worth it.
A friend and advocate tagged me in a post tonight on Facebook. I will share the link but here is an excerpt.
"How do you accept the fact that , although normal is a very ambiguous term, in the mainstream way of thinking she will never be normal. Most kids get a last minute-invite to a sleepover and their biggest concern is whether or not the host has a spare toothbrush for them to use. Well, at least the parents worry about that. Not my kid . . . or yours. Toothbrush? Check. List of restricted foods? Check. Vitamins and supplements separated into individual baggies with dosing times/instructions? Check. Nebulizer? Check. Compression vest? Check.
“Oh wait! In the rare event you are actually invited, you can’t sleep at anyone else’s house, because we chelate every three hours around the clock on weekends. Oops. Sorry honey.”
She might just be onto something when she wishes for normalcy. This would allow her to experience and enjoy all the daily events that most take for granted. I could watch with pride, instead of worry and panic. Most days I have accepted that this is the path we were meant to take. I just have to wonder, was it really necessary?
Another day, another loss."
Yet for us, being on the road brings thoughts. The hours driving, music playing and yet thoughts flow like a river. my mind wasn't going all over on the way to Children's more so as it was on the way home. Though while at Chick-Fil-A, I was reminded how sometimes a certain smell will bring much back. For me and I'm sure most of you, different sounds, smells or other things will bring back memories. Certain beeps, smells and other sounds bring different times of this medical journey into my head. Today it was a smell that reminded me of the Ronald McDonald House in Dallas. Medicinal smell. Yet in a way, it's comforting yet all too familiar. A familiarity that is fast approaching as we soon go back to Dallas, this time for both of my children. Time away from their friends and this summer as families go on vacations or children hang out with their friends, I will be watching my young son face his first surgery and his sister, who has been there twice just for this type, will for the first time be on this side of it. I am not looking forward to that whole thing at all..... Yet it has to be done.
Our losses may not be necessary, at least how WE see it but it could be worse. A lot worse. So worse that there are two special needs families who will say goodbye to their children this coming week as they are laid to rest. Something my daughter has seen herself. Loss. There are families we have met over the years on our journey that were torn apart because of loss, not always death either.
Yet no matter how dark it really does get, light is there. Salvation is there. We just have to hang in there and hope for the best..... "Fear can sometimes creep into my heart and steal my focus away from having faith. I'm learning the first step to stop fear is to acknowledge it. Then overpower fear with prayer and God's Truth." ~ Lysa TerKeurst ~
Listened to this the last hour on the way home today. I feel like I drive that on autopilot now, especially when pain clinic sees little miss once a month..... I often get songs stuck in my head and this one officially is now.
Salvation by Skillet
All alone, lost in this abyss
Crawling in the dark
Nothing to wet my longing lips
And I wonder where you are
Are you far?
Will you come to my rescue?
Am I left to die?
But I can’t give up on you
I feel you keeping me alive
You are my salvation
Touch you, taste you, feel you here
Oh oh, yeah yeah
I feel you keeping me alive
You are my salvation
Hold me, heal me, keep me near
Oh oh, yeah yeah
My heart will burn for you
It’s all I can do
Salvation
Salvation
(Keeping me alive)
Salvation
(You’re keeping me)
Salvation
(You’re keeping me alive)
Been out from under who I am
And who I want to be
Held you tightly in my hands
Why are we unraveling?
Was it me?
Will you come to my rescue
Or did I push to far
When I turned my back on you?
I feel you keeping me alive
You are my salvation
Touch you, taste you, feel you here
Oh oh, yeah yeah
I feel you keeping me alive
You are my salvation
Hold me, heal me, keep me near
Oh oh, yeah yeah
My heart will burn for you
It’s all I can do
Salvation
Salvation
(Keeping me alive)
Salvation
Touch you, taste you, feel you, need you
Give it all just to find you
Hold me, heal me
I will find you
Keeping me alive
You are my salvation
Touch you, taste you, feel you here
Oh oh, yeah yeah
Our love will never die
You are my salvation
Hold me, heal me, keep me near
Oh oh, yeah yeah
My heart will burn for you
It’s all I can do
Salvation
Salvation
Touch you, taste you, feel you, need you
Salvation
Driving down I-40, there is an area where above a cliff, at night you see a cross illuminated. Driving home today it was already totally dark, yet that cross could be clearly seen. White as snow in a black sky. As much as late appointments annoy me, if I wasn't driving home in the dark, I would not see that as a reminder to always keep the faith, no matter how hard or how dark it sometimes gets. I often wonder why God chose for my two children to deal with what they do yet I think they both will be stronger for it and yet will always know they have the other one to understand. At least if they were both having to face this journey, I pray that they never feel alone in it..... Yet a part of me wonders if the child I had miscarried was here, what journey would he/she be on?
kaydat.deviantart.com
I'm exhausted so I'm calling it a night.
Cheers!
~ Special Momma ~
While other trees fell all around
The weary wind gave up and spoke.
How can you still be standing Oak?
The oak tree said, I know that you
Can break each branch of mine in two
Carry every leaf away
Shake my limbs, and make me sway
But I have roots stretched in the earth
Growing stronger since my birth
You'll never touch them, for you see
They are the deepest part of me
Until today, I wasn't sure
Of just how much I could endure
But now I've found, with thanks to you
I'm stronger than I ever knew
There are days I feel that and days I don't... Just being honest. My last post I didn't, today I do. Mostly. We had another pain clinic appointment for my daughter today. Once a month we drive three hours one way to do these. It gets exhausting. Yet blessings are in our trips too. Our famous view of Little Rock.
We were also the customer of the day at the Chick-Fil-A we always stop at once in our trips. I know half of them by name in there and most of them know who we are. Yet the day in and day out of many days is tiring. Though my children are sooooo worth it.
A friend and advocate tagged me in a post tonight on Facebook. I will share the link but here is an excerpt.
"How do you accept the fact that , although normal is a very ambiguous term, in the mainstream way of thinking she will never be normal. Most kids get a last minute-invite to a sleepover and their biggest concern is whether or not the host has a spare toothbrush for them to use. Well, at least the parents worry about that. Not my kid . . . or yours. Toothbrush? Check. List of restricted foods? Check. Vitamins and supplements separated into individual baggies with dosing times/instructions? Check. Nebulizer? Check. Compression vest? Check.
“Oh wait! In the rare event you are actually invited, you can’t sleep at anyone else’s house, because we chelate every three hours around the clock on weekends. Oops. Sorry honey.”
She might just be onto something when she wishes for normalcy. This would allow her to experience and enjoy all the daily events that most take for granted. I could watch with pride, instead of worry and panic. Most days I have accepted that this is the path we were meant to take. I just have to wonder, was it really necessary?
Another day, another loss."
Yet for us, being on the road brings thoughts. The hours driving, music playing and yet thoughts flow like a river. my mind wasn't going all over on the way to Children's more so as it was on the way home. Though while at Chick-Fil-A, I was reminded how sometimes a certain smell will bring much back. For me and I'm sure most of you, different sounds, smells or other things will bring back memories. Certain beeps, smells and other sounds bring different times of this medical journey into my head. Today it was a smell that reminded me of the Ronald McDonald House in Dallas. Medicinal smell. Yet in a way, it's comforting yet all too familiar. A familiarity that is fast approaching as we soon go back to Dallas, this time for both of my children. Time away from their friends and this summer as families go on vacations or children hang out with their friends, I will be watching my young son face his first surgery and his sister, who has been there twice just for this type, will for the first time be on this side of it. I am not looking forward to that whole thing at all..... Yet it has to be done.
Our losses may not be necessary, at least how WE see it but it could be worse. A lot worse. So worse that there are two special needs families who will say goodbye to their children this coming week as they are laid to rest. Something my daughter has seen herself. Loss. There are families we have met over the years on our journey that were torn apart because of loss, not always death either.
Yet no matter how dark it really does get, light is there. Salvation is there. We just have to hang in there and hope for the best..... "Fear can sometimes creep into my heart and steal my focus away from having faith. I'm learning the first step to stop fear is to acknowledge it. Then overpower fear with prayer and God's Truth." ~ Lysa TerKeurst ~
Listened to this the last hour on the way home today. I feel like I drive that on autopilot now, especially when pain clinic sees little miss once a month..... I often get songs stuck in my head and this one officially is now.
Salvation by Skillet
Isaiah 53:5-6
All alone, lost in this abyss
Crawling in the dark
Nothing to wet my longing lips
And I wonder where you are
Are you far?
Will you come to my rescue?
Am I left to die?
But I can’t give up on you
I feel you keeping me alive
You are my salvation
Touch you, taste you, feel you here
Oh oh, yeah yeah
I feel you keeping me alive
You are my salvation
Hold me, heal me, keep me near
Oh oh, yeah yeah
My heart will burn for you
It’s all I can do
Salvation
Salvation
(Keeping me alive)
Salvation
(You’re keeping me)
Salvation
(You’re keeping me alive)
Been out from under who I am
And who I want to be
Held you tightly in my hands
Why are we unraveling?
Was it me?
Will you come to my rescue
Or did I push to far
When I turned my back on you?
I feel you keeping me alive
You are my salvation
Touch you, taste you, feel you here
Oh oh, yeah yeah
I feel you keeping me alive
You are my salvation
Hold me, heal me, keep me near
Oh oh, yeah yeah
My heart will burn for you
It’s all I can do
Salvation
Salvation
(Keeping me alive)
Salvation
Touch you, taste you, feel you, need you
Give it all just to find you
Hold me, heal me
I will find you
Keeping me alive
You are my salvation
Touch you, taste you, feel you here
Oh oh, yeah yeah
Our love will never die
You are my salvation
Hold me, heal me, keep me near
Oh oh, yeah yeah
My heart will burn for you
It’s all I can do
Salvation
Salvation
Touch you, taste you, feel you, need you
Salvation
Driving down I-40, there is an area where above a cliff, at night you see a cross illuminated. Driving home today it was already totally dark, yet that cross could be clearly seen. White as snow in a black sky. As much as late appointments annoy me, if I wasn't driving home in the dark, I would not see that as a reminder to always keep the faith, no matter how hard or how dark it sometimes gets. I often wonder why God chose for my two children to deal with what they do yet I think they both will be stronger for it and yet will always know they have the other one to understand. At least if they were both having to face this journey, I pray that they never feel alone in it..... Yet a part of me wonders if the child I had miscarried was here, what journey would he/she be on?
kaydat.deviantart.com
I'm exhausted so I'm calling it a night.
Cheers!
~ Special Momma ~
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