When reading the story of the Israelites being led through the desert, provided for at every turn by God himself, I have admittedly thought to myself, "How could they doubt with all the Presence they were blessed with?" How could they, how could THEY, how could they? It seems so implausible given the circumstances, that they could actually complain, grumble, and doubt the fact that they were being Divinely cared for. The day's manna hadn't even digested before they were doubting and grumbling again. And again. And again.
Four months ago, a doctor asked me if I wanted a chaplain to come sit with me while she and others tended to my son's medical emergency. Two words a parent never wants to hear in the same sentence...chaplain and son. She said, "This could get dicey". For about 20 minutes my little world became a monstrosity of emotions. When they came to get me from the waiting room, a flood of thankfulness overtook me as she said, "The ventilator tubing had kinked itself inside of him. We never see that." Thank God. The problem was not with my son but with the equipment and it was an easy fix. Thank God. Thank God. I wish I could say that was the first time I had seen medical staff have to perform resuscitation on my son. It wasn't. With his seizure disorder, I had seen it before. It looks the same in every doctors eyes. The first time it happened, no one had time to remove me or my mom from the room. We just sat and watched. We watched him seize for over half an hour. We watched him turn ashen gray.
All of this to say, today, he's a healthy 14 year old boy with nothing medical looming over his future. I have witnessed miracles. Huge miracles. I have been fed daily manna from my God just the same as the Israelites. I have clung to God as my world threatened to crumble around me and asked Him to just stay beside me and give me what I needed to get through that moment. And the next...and the next. Here's the kicker: I have turned right back around and grumbled. Grumbled that I didn't have enough. Grumbled that I wasn't enough. Grumbled because I couldn't feel Him. Grumbled because He wasn't fixing some problem for me. I have grumbled and complained to the very God that has spared my son's life over and over again.
Hi my name is Cynthia and I am like the Israelites. How could I? How dare I?
How quickly I can forget the tender mercies of yesterday. The miracles I have been witness to. I have personally seen God do big things! I have had some of the best seats in the house and yet, I have found myself telling God I need more, I want more, show me more. Someone said something today that got me thinking about this. I have seen such great wonders of God. The Israelites had seen such great wonders of God. What if, because they saw such huge and obvious blessings literally pour from the heavens, they became addicted to the constant shower of Presence and the rush of adrenaline God provides. What if the greatness of what they saw made everything else about life mundane and boring? Laborious and monotonous. Thus came the grumbling and complaining. What if they had seen God provide so much they wondered in their humanity when God would stop showering them with blessings and do away with them because of their lack of faith or disobedience?
I would be lying if I said I never think those things for myself. I have experienced the Presence of God in huge ways -- as if He were sitting next to me. So in between those huge experiences, I find myself asking Him why I can't feel Him. As if He has left me. Yeah right. It's my attitude that has tried to leave Him. It's the world, Satan, that has crept back in to my thoughts telling me I don't have enough, I'm not enough, I will never be enough.
So, what is enough? When has He done enough? When will I stop complaining? When I force myself back to the beginning. When I pull myself out of my stinkin' thinkin' and grab hold of my foundation again. Christ dying on the cross just for me is enough. I know that, it's huge. Yep, that's enough. But He didn't stop there for me and He doesn't stop there for you either. He's already done enough but He keeps doing. He spared my son's life multiple times when the reality is He didn't even spare His own Son's life.
I tend to read the Israelite story with disgust at how they could lose heart with God right there, providing just because they were His chosen people. And yet, I, four months out of my son's surgery found myself losing heart and becoming frustrated with life's situations. I found myself asking God where He was and why I couldn't feel Him. Once I get my heart right, I realize He's still here, still right next to me. Still doing big things, but how could I notice when I won't pull my head out of my worldly "ars" and look with my heavenly eyes? God never abandons us, but too often our perception does.
Showing posts with label miracles. Show all posts
Showing posts with label miracles. Show all posts
Tuesday, February 5, 2013
Monday, August 13, 2012
Kasey's Scoliosis Journey
My son Kasey turns 14 on December 14th. His scoliosis was discovered just after his first birthday. It was of little consequence back then compared to his other health struggles. They were giving him an entire body work-up due to uncontrollable seizures when they discovered the scoliosis and a hole the size of a quarter in his little heart. At that time, the hole was the immediate concern because it was so large and even having a bowel movement could have caused him a heart attack. That was immediately fixed and we began monitoring his back. All these years he has been in multiple body casts and braces for months at a time to try to control the curvature.
In 2002, K had a partial spinal fusion in his lumbar area. They added cadaver bone to a vertebrae that was triangular-shaped and he went into a body cast immediately after for a few months. He was given a wheelchair and we were told not to let him walk for a while. So, I would pull the wheelchair up to our basketball hoop (because b-ball was his fav!) and my other son, Noah, just a year and a half old would fetch balls for him. I believe we only made it about a week before K figured out how to wiggle out of his chair and I found him standing up playing ball WITH Noah and that was the end of keeping him down. Same with his open heart surgery. Just a few days post-op, he was standing up in his hospital crib shaking the side of it! He sure is a trooper and if you know him, he's got a wonderful attitude so I'm sure that his upcoming surgery will be no different.
Since 2002, it has only been body casts, braces, and frequent doctor visits to closely monitor his growth. In late 2008 we got news that it was time to address surgery. We did everything needed and even drove through a massive snow storm to Salt Lake City Shriner's for the surgery. When we met with doctors however, they said it was a no-go. And we've been on the "surgery or not" roller coaster ever since. Some of you have been on that with us and probably got tired of us getting all ready for surgery only to say it was cancelled. It was very emotionally taxing, and honestly, it will be a relief not to have this major surgery looming over us anymore. We never could totally understand why surgery kept getting cancelled. Now we plainly see it was because no one really, really knew what the best plan of action was.
Last year in December we met with K's docs to discuss recent results of his spine MRI and CT. We were told that his spine had gotten worse and was very complicated. Shriner's deal with children and although K is a child, they said his back and spinal cord had issues more commonly seen in adults. They said they would need to consult with other docs around the country to see how to proceed because the risks of doing surgery on his complicated little back were just as risky as not doing surgery. There is an issue of his own vertebrae damaging his spinal cord if left untreated but to untangle and fix the mess that his back is in, comes with the same risks including paralysis, loss of bowel and bladder control, diminished quality of life, loss of the ability to walk, etc. It was very clear to me that we had now exceeded Shriner's scope of knowledge, the docs were perplexed, and we would need to find someone who was comfortable takeing his case.
We sat in limbo until about a month ago when I contacted some local docs recommended by Shriner's. Our new doc looked at the CT/MRI results and concluded the same -- it is highly risky, but surgery needs to be done immediately. The new info he presented, however, brought all the on again/off again limbo into clearer focus. What we hadn't been told previously was that his 2002 fusion was no longer in place, that he had a tethered cord (which is that his spinal cord is being pulled on at the bottom due to an attachment called a fatty filum), and a small syrinx or outpouching in his spinal cord. We had him tested years ago specifically for tethering and syringomyelia at the recommendation of our chiropractor. The results came back negative. You can imagine our shock last month to find out that those complications actually did exist and had existed all along. The issue is that someone might have overlooked these things because they were so small and hard to see. The on again/off again kept happening because in light of all the extra issues, surgery is risky and there is no guarantee it will makes things better and not worse. There is no manual, no story that is identical to what we are dealing with and hindsight will be our only guide as to whether we made the right decision or not. The awesome praise about that visit is that the doctor said he is so much more flexible that he should be (I think it's because our awesome Chiropractor worked on him nearly weekly since we found the scoli) and that kiddos with Kasey's degree of curvature have usually had multiple surgeries due to internal organ compromise...his organs are healthy and happy :)
So, a few weeks ago we met with a neurosurgeon to discuss spinal cord, tethering issues that would need to be addressed in their own surgery prior to the fusion surgery. She also met us with some perplexity. I should be used to this with K at this point because nothing in his life has been cut and dry. One doc years ago used him as a case study because of his complexities. The neuro said she would ask other neuro's and see what their opinions are because spinal cord surgery may be necessary but it may not be. Well, today her call came. He needs to have surgery for his tethering but originally we were told it would require two surgeries, now they are going to do the fusion and tethering in one. August 29th. That's our day. Tomorrow we go in for a pre-op appointment where we will learn more about what's to come. I've stalked these docs online and learned all I can about them and their reputations and I feel 100% comfortable with them doing it. Where I lose it is in the risks and the amount of pain they tell us Kasey will have post-op.
The expected outcome for him is that after 6 mos of recouperating, he will be able to join right back in to all the sports he loves! He should be able to walk further distances, and his daily back pain should become little to nothing. He should be straighter which will lighten the load on his organs, it could possibly cure his migraines as thethering of the cord can cause them. And it could give him enough height to slam dunk a basketball! (Well...almost!)
We are fully placing our faith in God and this hasn't come without lots of prayer. We feel peace about moving forward with surgery but we know there's no turning back once the decision is made. There is no way to know what the future holds. We feel it holds peace, health, prosperity, and long life for our son and we are holding tightly to that.
The neurosurgeon will go in and cut the attachment that is causing the tethering of his cord. The biggest risk with her is that she could cut a nerve root and it could cause numbness in a certain area. Her part is self admittedly easy compared to the other two docs'. The spinal fusion will be from neck to pelvis. It will be an 8-12 hour surgery with docs who have done many of these surgeries in third world countries with much less technology and even by candlelight. God led us to these doctors, of that I am sure. In the link below, you can learn about the fusion surgery as told by one of Kasey's actual doctors.
We know the power of God and resiliency of our kiddo so we ask you to join with us in praying for Kasey, our docs, and our family as we face this last foreseeable hurdle in Kasey's journey to wellness. I am not beyond begging for your prayers and in advance, thank you, because you will never know how much those mean to us.
I am planning on using this blog to regularly post updates to family and friends so feel free to subscribe if you want to stay in the loop. Any who know me, know I am not good at making/answering phone calls so this will be a good spot to get info.
In 2002, K had a partial spinal fusion in his lumbar area. They added cadaver bone to a vertebrae that was triangular-shaped and he went into a body cast immediately after for a few months. He was given a wheelchair and we were told not to let him walk for a while. So, I would pull the wheelchair up to our basketball hoop (because b-ball was his fav!) and my other son, Noah, just a year and a half old would fetch balls for him. I believe we only made it about a week before K figured out how to wiggle out of his chair and I found him standing up playing ball WITH Noah and that was the end of keeping him down. Same with his open heart surgery. Just a few days post-op, he was standing up in his hospital crib shaking the side of it! He sure is a trooper and if you know him, he's got a wonderful attitude so I'm sure that his upcoming surgery will be no different.
Since 2002, it has only been body casts, braces, and frequent doctor visits to closely monitor his growth. In late 2008 we got news that it was time to address surgery. We did everything needed and even drove through a massive snow storm to Salt Lake City Shriner's for the surgery. When we met with doctors however, they said it was a no-go. And we've been on the "surgery or not" roller coaster ever since. Some of you have been on that with us and probably got tired of us getting all ready for surgery only to say it was cancelled. It was very emotionally taxing, and honestly, it will be a relief not to have this major surgery looming over us anymore. We never could totally understand why surgery kept getting cancelled. Now we plainly see it was because no one really, really knew what the best plan of action was.
Last year in December we met with K's docs to discuss recent results of his spine MRI and CT. We were told that his spine had gotten worse and was very complicated. Shriner's deal with children and although K is a child, they said his back and spinal cord had issues more commonly seen in adults. They said they would need to consult with other docs around the country to see how to proceed because the risks of doing surgery on his complicated little back were just as risky as not doing surgery. There is an issue of his own vertebrae damaging his spinal cord if left untreated but to untangle and fix the mess that his back is in, comes with the same risks including paralysis, loss of bowel and bladder control, diminished quality of life, loss of the ability to walk, etc. It was very clear to me that we had now exceeded Shriner's scope of knowledge, the docs were perplexed, and we would need to find someone who was comfortable takeing his case.
We sat in limbo until about a month ago when I contacted some local docs recommended by Shriner's. Our new doc looked at the CT/MRI results and concluded the same -- it is highly risky, but surgery needs to be done immediately. The new info he presented, however, brought all the on again/off again limbo into clearer focus. What we hadn't been told previously was that his 2002 fusion was no longer in place, that he had a tethered cord (which is that his spinal cord is being pulled on at the bottom due to an attachment called a fatty filum), and a small syrinx or outpouching in his spinal cord. We had him tested years ago specifically for tethering and syringomyelia at the recommendation of our chiropractor. The results came back negative. You can imagine our shock last month to find out that those complications actually did exist and had existed all along. The issue is that someone might have overlooked these things because they were so small and hard to see. The on again/off again kept happening because in light of all the extra issues, surgery is risky and there is no guarantee it will makes things better and not worse. There is no manual, no story that is identical to what we are dealing with and hindsight will be our only guide as to whether we made the right decision or not. The awesome praise about that visit is that the doctor said he is so much more flexible that he should be (I think it's because our awesome Chiropractor worked on him nearly weekly since we found the scoli) and that kiddos with Kasey's degree of curvature have usually had multiple surgeries due to internal organ compromise...his organs are healthy and happy :)
So, a few weeks ago we met with a neurosurgeon to discuss spinal cord, tethering issues that would need to be addressed in their own surgery prior to the fusion surgery. She also met us with some perplexity. I should be used to this with K at this point because nothing in his life has been cut and dry. One doc years ago used him as a case study because of his complexities. The neuro said she would ask other neuro's and see what their opinions are because spinal cord surgery may be necessary but it may not be. Well, today her call came. He needs to have surgery for his tethering but originally we were told it would require two surgeries, now they are going to do the fusion and tethering in one. August 29th. That's our day. Tomorrow we go in for a pre-op appointment where we will learn more about what's to come. I've stalked these docs online and learned all I can about them and their reputations and I feel 100% comfortable with them doing it. Where I lose it is in the risks and the amount of pain they tell us Kasey will have post-op.
The expected outcome for him is that after 6 mos of recouperating, he will be able to join right back in to all the sports he loves! He should be able to walk further distances, and his daily back pain should become little to nothing. He should be straighter which will lighten the load on his organs, it could possibly cure his migraines as thethering of the cord can cause them. And it could give him enough height to slam dunk a basketball! (Well...almost!)
We are fully placing our faith in God and this hasn't come without lots of prayer. We feel peace about moving forward with surgery but we know there's no turning back once the decision is made. There is no way to know what the future holds. We feel it holds peace, health, prosperity, and long life for our son and we are holding tightly to that.
We know the power of God and resiliency of our kiddo so we ask you to join with us in praying for Kasey, our docs, and our family as we face this last foreseeable hurdle in Kasey's journey to wellness. I am not beyond begging for your prayers and in advance, thank you, because you will never know how much those mean to us.
I am planning on using this blog to regularly post updates to family and friends so feel free to subscribe if you want to stay in the loop. Any who know me, know I am not good at making/answering phone calls so this will be a good spot to get info.
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