"We've had a little set back." These are not the words you ever want to hear but ones that come all too frequently when dealing with a special needs child. Set backs come in all shapes and sizes and sometimes seem overwhelming and insurmountable. Other times they are just a matter of making an adjustment or waiting something out a week or two. We've had our share of them through the years and lately there is what seems like a very challenging one looming over us.
In the hospital after the accident, set backs were things like pneumonia from the breathing tube, a staff infection in the bloodstream, the need for high top shoes so that the muscles in the feet could readjust for walking, yanking out the feeding tube before they were really ready to survive without it and days where the brain was so agitated that it made therapy an impossible venture.
Today, set backs seem larger or it may be that I'm just tired of them so every single one looks much bigger than it really is like the shadow a mountain casts when it blocks the sun making the mountain appear three times it's real size. In my mind I know it can be overcome, but the thought of all the time and effort and probably rejection we will encounter just makes me hesitant to start the seemingly long climb it will take to surmount the problem. If only it were something medicine or a doctor could fix.
During the years since the accident, I have relied mostly on the school district for therapy and advice. Before the end of her senior year I contacted a vocational rehab service in hopes that she would be able to get employment of some kind. In the meantime, I also started the long, drawn out and extremely frustrating process of seeing if she qualifies for SSI. Mostly with SSI, I've just run around collecting information, which never seems to satisfy them. In the end, she will probably be turned down at which time we will have to secure a lawyer-just one more expense in the sea of financial obligations that we never dreamed we would be responsible for. The lack of SSI has also limited what services she can receive because some agencies expect partial payment for things that SSI would cover if she had it, which frankly we can't afford. So OVR has "referred" us to another agency and so we start the process all over again. In the meantime there is just a lot of frustration because employment is desired but can't be found. And so we flit from one agency to the next until the age of 21, which may open a few more doors than we can open now, but that's 3 years away!
In the beginning I determined that set backs would be looked at more like detours and that worked well for me. And in the back of my mind, I still see all of this as a means to an end. I guess I was just hoping that the trip would end sooner than it appears it will. Am I being selfish? Probably, a little. Secretly, I don't want to be like our neighbor who is in her 80's and still caring for a brain injured son on the weekends. Sometimes I feel torn between wanting to do things that women with "normal" children are doing at my age and wanting to do whatever I can to help my child. But I have to remind myself that the grass is not always greener on the other side of the fence. I'm like the dairy cows we had on our farm. We would spend hundreds of dollars planting something special for them to eat. We were always so excited to let them out into that pasture in the spring so they could enjoy it. After a day or two, where were they? Sticking their heads through the wire fence with their long, sticky tongues grabbing thistles and milkweed and pulling it into that nice, lush field!
Today I have to remind myself what the other side of the fence looks like in my case. If my child had died, I would be doing what women with "normal" children are doing but would it be worth the empty chair at our table, the open spot under the Christmas tree, and all the photo pages that would not be filled with heart snapshots through the years? I think not. It would be a burden far more heavy to bear than what I have now.
So, I'll step back, take a deep breath, create a plan of attack and take a run at this mountain! If I don't quite make it over, I'll slide back to the bottom, look at it from a different perspective and try again and again and again, if need be, til I reach the summit and can shout victory!
Friday, September 7, 2012
Thursday, September 6, 2012
Whose Fault Is it?
Immediately after being questioned by the police about the accident, the question of blame came up. It was a one car accident. The only thing hurt, other than my family, was the telephone pole. The cause was determined to be black ice and I was not faulted, either because I truly was innocent or the policeman figured that I had lost enough for one day.
It turns out that the accident happened on the county line. Neither county wants to send salt trucks to the line because they have to salt some of the next county's property as well, so they both avoid salting until absolutely necessary. I guess it is the same reason that they use for the absence of a guardrail on such a dangerous corner. Interestingly enough, as soon as the emergency call went out, the salt trucks were the first to arrive-from both counties. I'll give them the benefit of the doubt and believe that they were paving the way for the ambulances that would be transporting us and not trying to cover their butts, although I've heard the latter from reliable sources. But what would the purpose of suing be? It would not make my kids better or bring back my vehicle. In fact, it was a blessing that it did happen on the county line. The actual county that should have responded did not have any paramedics on their staff, only emergency medical technicians. They are not able to insert airways which is exactly what my kids needed. So when the paramedics heard of the severity of the accident and how many were involved, they trashed protocol and traveled across county lines to administer medical attention to my children. It is quite possibly what made the difference between brain injury or brain damage or brain death.
So if my misfortune was not my fault, nor the pole's fault, nor the fault of the county, then whose was it?
The only explanation would be to look to a higher power. Many, I know, blame God when something inexplicably terrible happens. And although I wanted an explanation from God as to why He ALLOWED this, I was not willing to BLAME Him. It's just stupid to blame the only source of power and help that you have. The doctors had exhausted all they could do, so now the lives of two of my children just hung in the balance, drifting in and out of this world and the next. For 72 hours, we waited to know if the little ones would live. And we prayed. And we worshipped. God had already been at work, but we needed Him to continue working.
According to the doctor overseeing our cases, ours was the longest list of injuries he had ever had to review with parents. (It tickled me that his last name was Cilley, pronounced "silly". He was the most somber person I had ever met and a complete dichotomy with his name.) There were bruised lungs, broken ribs, a broken ankle, a broken arm, a broken collar bone, broken orbital bones in both of the babies, a lacerated spleen that might require removal, multiple facial wounds, and two traumatic brain injuries. Not to mention a severe concussion and bruising on the left side of my body as well.
Frankly, I still don't understand it all, but I don't have to in order to survive and continue and progress and grow. I had learned from previous experiences that we can't help what hand life deals us, but we can decide how we're going to play it. I chose to play the hand with God as the biggest factor in the equation. It would be the only way that I could possibly survive what lay ahead of me as a mother and a caregiver of my children. It would only be through supernatural means that I could possibly come through this ordeal without permanent scars emotionally and spiritually. It would only be through GOD that I would come through this even better, happier, and more assured in my faith than I was before as well.
The determination of fault would come later along with a totally rational spiritual understanding, but at first I just had to rely on what I had known and experienced of God in the past. In every situation leading up to this day, I had trusted Him and He had never failed to come through. I don't understand everything in the Bible, but what I did understand and had tested God in had always resulted in God answering with faithfulness, compassion, love and exactly how it said He would. So now that I was facing something I just couldn't wrap my brain around, I knew that I could trust Him in this as well because He had been so faithful in what I did know. Never once had He failed me. Besides what other options did I have?
Figuring out whose fault it is is often important to us because it allows us the hope that some of the personal responsibility will be shifted from us onto something else. In my case, all the blame lay squarely on my shoulders for a variety of reasons. I was the one driving. In hindsight, I now realize that God did try to warn me that something was coming but I was so occupied with the packing and preparations, I didn't take the time to listen or explore what God might have said to me. Perhaps if I had, it could have prayed out of the way, I don't know. That's water under the bridge. Ultimately anything bad that happens to us or because of us is because of the evil present in this world. God is not evil. He is good.
To be honest, I don't need to know who's fault it was. It is what it is. I'm still left with the same results, with the same life challenges, and with the same heartaches. So that is where I start. Trying to drag who or what is at fault is only extra baggage I would have to carry with this already large load! So I choose to forgive and forget and to trust that God is helping me through each and every day because that's what He does. That's who He is!
It turns out that the accident happened on the county line. Neither county wants to send salt trucks to the line because they have to salt some of the next county's property as well, so they both avoid salting until absolutely necessary. I guess it is the same reason that they use for the absence of a guardrail on such a dangerous corner. Interestingly enough, as soon as the emergency call went out, the salt trucks were the first to arrive-from both counties. I'll give them the benefit of the doubt and believe that they were paving the way for the ambulances that would be transporting us and not trying to cover their butts, although I've heard the latter from reliable sources. But what would the purpose of suing be? It would not make my kids better or bring back my vehicle. In fact, it was a blessing that it did happen on the county line. The actual county that should have responded did not have any paramedics on their staff, only emergency medical technicians. They are not able to insert airways which is exactly what my kids needed. So when the paramedics heard of the severity of the accident and how many were involved, they trashed protocol and traveled across county lines to administer medical attention to my children. It is quite possibly what made the difference between brain injury or brain damage or brain death.
So if my misfortune was not my fault, nor the pole's fault, nor the fault of the county, then whose was it?
The only explanation would be to look to a higher power. Many, I know, blame God when something inexplicably terrible happens. And although I wanted an explanation from God as to why He ALLOWED this, I was not willing to BLAME Him. It's just stupid to blame the only source of power and help that you have. The doctors had exhausted all they could do, so now the lives of two of my children just hung in the balance, drifting in and out of this world and the next. For 72 hours, we waited to know if the little ones would live. And we prayed. And we worshipped. God had already been at work, but we needed Him to continue working.
According to the doctor overseeing our cases, ours was the longest list of injuries he had ever had to review with parents. (It tickled me that his last name was Cilley, pronounced "silly". He was the most somber person I had ever met and a complete dichotomy with his name.) There were bruised lungs, broken ribs, a broken ankle, a broken arm, a broken collar bone, broken orbital bones in both of the babies, a lacerated spleen that might require removal, multiple facial wounds, and two traumatic brain injuries. Not to mention a severe concussion and bruising on the left side of my body as well.
Frankly, I still don't understand it all, but I don't have to in order to survive and continue and progress and grow. I had learned from previous experiences that we can't help what hand life deals us, but we can decide how we're going to play it. I chose to play the hand with God as the biggest factor in the equation. It would be the only way that I could possibly survive what lay ahead of me as a mother and a caregiver of my children. It would only be through supernatural means that I could possibly come through this ordeal without permanent scars emotionally and spiritually. It would only be through GOD that I would come through this even better, happier, and more assured in my faith than I was before as well.
The determination of fault would come later along with a totally rational spiritual understanding, but at first I just had to rely on what I had known and experienced of God in the past. In every situation leading up to this day, I had trusted Him and He had never failed to come through. I don't understand everything in the Bible, but what I did understand and had tested God in had always resulted in God answering with faithfulness, compassion, love and exactly how it said He would. So now that I was facing something I just couldn't wrap my brain around, I knew that I could trust Him in this as well because He had been so faithful in what I did know. Never once had He failed me. Besides what other options did I have?
Figuring out whose fault it is is often important to us because it allows us the hope that some of the personal responsibility will be shifted from us onto something else. In my case, all the blame lay squarely on my shoulders for a variety of reasons. I was the one driving. In hindsight, I now realize that God did try to warn me that something was coming but I was so occupied with the packing and preparations, I didn't take the time to listen or explore what God might have said to me. Perhaps if I had, it could have prayed out of the way, I don't know. That's water under the bridge. Ultimately anything bad that happens to us or because of us is because of the evil present in this world. God is not evil. He is good.
To be honest, I don't need to know who's fault it was. It is what it is. I'm still left with the same results, with the same life challenges, and with the same heartaches. So that is where I start. Trying to drag who or what is at fault is only extra baggage I would have to carry with this already large load! So I choose to forgive and forget and to trust that God is helping me through each and every day because that's what He does. That's who He is!
Saturday, June 30, 2012
Spiritually Speaking
I cannot tell this story without speaking to it from every angle. In the future I will be posting things of a more practical nature like:-Hospital Helps
-Things I would say....to doctors, teachers, friends, strangers, etc.
-When we're tempted to give up or give in
-What to say to hurtful jerks!
-Special needs people are not special
-Where special needs people fit into political correctness and diversity
For now though, I want to establish that this has been as much, if not more of, a spiritual journey for me than a natural or emotional one. So to write without mentioning the spiritual experiences would be to neglect the most important factor in all the other things I will write about.
Some have said "attitude is everything". I have found that to be so true. And having a solid foundation of faith in Jesus Christ before this happened is what sustained me through it. I found myself put in the position where I was forced to determine what I believed and to put that belief into action. It was all that I had.
I can honestly say that if I could go back and change what happened if I would give up all that I saw God do, all that I learned about God, how He revealed Himself to me and worked in my situation, I couldn't do it. Part of this is because "life gave me lemons...so I made lemonade." I could only do this because of what I already knew and had experienced with God. My attitude, my outlook and my hope for the future were all in Him and He did not disappoint. In fact, He wowed the socks right off me!
Some of what I might share will sound foreign to some Christians and certainly to those without any religious training or leanings. Some of it might make you mad because I may say the exact opposite of what you've been taught or what you have believed in order to survive where you are as a mom with a disabled child, but it's what I believe and it's worked well for me. Furthermore, it's based on scripture and actually when thought about makes perfect sense. Understanding brings peace, hope, security and a proper perspective that helps this life that has chosen us make sense.
Monday, June 18, 2012
When The Rubber Leaves The Road
It was a typical March morning. Breezy, chilly, but sunny. The beginning of a week long holiday. My children (then ages 2, 3,5 and 13) would be vacationing with Grandma. My husband and I would be driving two days west with his staff to attend a conference. Even though technically it was a "working" vacation, a week away from the diapers, the potty training, the crying, the interrupted nights, and a budding teenager seemed like a vacation to me. I packed the kids in the van and started out on my way to leave the kids and the van with my mother-in-law. My husband followed a half hour behind in the car we would be taking to the conference.
Half an hour away from Grandma's house, the car began to sputter-water in the gas tank? Even with the gas pedal all the way to floor, the speedometer topped out at 35mph. Because we were on a small state highway, barely more than a country lane, there were no gas stations or even places to pull over. In front of me loomed one of the highest mountain peaks in PA and I wondered how we would make it over. From the sky the first evidence of a snow storm began to flutter to the earth and that made me a little more nervous because the road over the mountain was not much wider than the one we presently traveling. We rounded a corner that began the descent into a small village that lay right at the base of the mountain. As I looked out the driver's side window it seemed that the back of the van was now somehow beside the van and I realized that we were sliding. I briefly saw a telephone pole right on the berm of the road and quickly prayed that we wouldn't hit it. It was too late.
The driver's side rear quarter panel and the side of my daughter's head slammed into the telephone pole. The van bounced off the pole and off the road, rolling down the 15 foot bank on the side of the road and dragging my 5 year old's head on the bare ground. We came to a stop at the bottom, resting on the driver's side.
All was quiet. All but one of us was unconscious. He dangled from his car seat still buckled into the passenger side seat as he gazed at his Mamma who was not moving or talking. When I was awakened by the annoying smell of smelling salts, the van was empty except for my dangling son. They removed him, totally unharmed. to a home across the road and two firemen dragged me from the vehicle. Outside of the van, scattered all over a small field, lay all of our personal belongings. It looked as if a bomb had exploded and had thrown their toys, bed rolls, pillows, potty chairs and clothing all over the ground surrounding where we had come to rest. As I surveyed the carnage, my eyes fell on three of my children laying on the ground side by side. It reminded me of a mini-version of the scene from Gone With The Wind where the thousands of wounded are laying in rows. The two babies were still and pale, lips blue, blood stained. I heard a man telling two paramedics that the two little ones had no vital signs and for a few moments what he said didn't really register. I was still taking in the snow, the field, the fire trucks, the ambulances, the medical personnel, and the tow trucks.
My oldest daughter was now conscious and looked over at me with tear filled eyes. All she said was "Mamma, you need to pray!" And I did. It was like no prayer I had ever prayed in my life. Turns out it was probably the shortest, most effective prayer I have ever prayed. When I was finished, an oxygen mask was slapped on my face and the paramedic said, "take deep breaths, Mam." (I think the prayer scared him. Honestly, it surprised me too!)
So many thoughts crossed through my mind as I stood on the side of the road and then as they walked me across the road to the house where my dangling son had been taken. It's funny to me how foggy, yet how clear your thoughts can come in those instances.
Eventually my husband appeared in the doorway of the house as the paramedics came in to take me to the hospital. I didn't realize that they had moved me away from the young children because they were pretty sure that they were dead and they didn't want me to know. In the ambulance, I started to thaw out. The snow storm had come quickly over the mountain after the crash and we had almost froze to death, which turned out to be a blessing for my youngest ones because it slowed the bleeding in their brains. As they threw warmed blankets on my body and heated IV liquids into my bloodstream, I clung to the hand of the paramedic asking over and over again "How are my babies? Are they okay? Where are they taking them?" The driver, not wanting me to hear, turned down the radio.
We arrived at the nearest medical center which looked more like a veterinary clinic. They really weren't equipped to handle an accident or injuries of this magnitude. After some conversation with my husband in the waiting room they decided to transfer the whole lot of us to the nearest trauma center which happened to be in Hershey, PA. Hershey was soon to become my second home and would become much sweeter to me than the chocolate they make there.
Welcome to Didn't Sign Up For This
I never signed up to have disabled children. I guess most women don't -except for those unique families who see it as a calling or ministry. I dreamed of having a house full of healthy, happy children-perfect and normal in every way. And that's exactly what I got. Until we had a devastating car accident.
In a matter of one second I went from being a mother of 4 healthy children to the mother of 4 children, two of which were now severely brain injured. Funny how quickly and completely life can change.
Caring for disabled children was one of those things I neither felt graced to do or ever wanted to do. All that I had heard from other mothers who had disabled children just sounded too hard and I quickly came to the conclusion that I was not cut out to do it.
Funny how quickly our perspective can change.
Funny how quickly our priorities can get re-adjusted.
Funny how when the rubber hits the road, you find yourself willing and wanting to do things you never imagined. You may leave skid marks along the way. There may be times when the rubber leaves the road again and times when the stench from the burnt rubber is almost unbearable. But eventually we will all reach our destination.
This blog is a collection of the thoughts, trials, victories and revelations I have had as a mother of two brain injured children. It is a blatantly honest, sometimes raw re-telling of where I've been and where I am and where I hope to be in the future.
In a matter of one second I went from being a mother of 4 healthy children to the mother of 4 children, two of which were now severely brain injured. Funny how quickly and completely life can change.
Caring for disabled children was one of those things I neither felt graced to do or ever wanted to do. All that I had heard from other mothers who had disabled children just sounded too hard and I quickly came to the conclusion that I was not cut out to do it.
Funny how quickly our perspective can change.
Funny how quickly our priorities can get re-adjusted.
Funny how when the rubber hits the road, you find yourself willing and wanting to do things you never imagined. You may leave skid marks along the way. There may be times when the rubber leaves the road again and times when the stench from the burnt rubber is almost unbearable. But eventually we will all reach our destination.
This blog is a collection of the thoughts, trials, victories and revelations I have had as a mother of two brain injured children. It is a blatantly honest, sometimes raw re-telling of where I've been and where I am and where I hope to be in the future.
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