I Have a Child With a Disability
My younger boy has been one of those extra special little guys. The day he was born he pretty much came out screaming at the top of his lungs...something every parent wants to hear. Mom's pregnancy seemed very normal as far as pregnancies go. My boy stayed cooped up inside mom a little too long and eventually labor had to be induced. When that happened, mom went into instant labor...like 'holy ****...get the doctor in here now!!' labor. The nurse had to ask my wife to hold back on pushing for about half an hour, but my boy was pretty determined that he wanted out NOW. Eventually the doctor did get there...we found out later, he wasn't even at the hospital at the time my wife was induced. My son had his umbilical cord wrapped around his neck twice, which the doctor was able to get untangled. Again, my boy came out screaming, so we didn't feel like there was anything wrong.
Fourteen days later, the day after Christmas, my son started having seizures. I wasn't at the house at the time. My wife said that she had heard some odd noises on his baby monitor and went to his crib to check on him. She found him with his eyes clenched closed and shaking horribly. She immediately called me. I told her to call emergency service and I left as quickly as I could to get back home. As fast as I could I raced home. When I rolled into my neighborhood, I had one emergency service vehicle ahead of me and an ambulance behind. For some reason, the sight of the emergency services vehicles racing into my neighborhood really put a sense of reality into me. I had to wave down the vehicles because they made a wrong turn in my neighborhood and had them follow me down to my house.
I slid my truck to a halt in my front yard and ran into my house to see my wife crying and holding my new born. Incidentally, my older boy, who was a little over two at the time, was quietly playing with some toys in the living room. To this day I'm amazed at how relaxed and well he handled all the commotion. The EMS personnel ran in behind me and quickly snatched my boy out of my wife's arms to try and ***** his state. My wife and I were both in shock. I found out later that I held up the EMS personnel for about 30 seconds, trying to get to my son, because I was blocking access to him and my wife. I barely remember any of that. They quickly determined that he needed to go to our local hospital and that only one of the parents could ride along in the ambulance. My older boy and I would have to follow them to the hospital and I was warned not to try to keep up(really?). The ambulance left with both my wife and newborn struggling in the back. They were not able to arrest his seizures entirely in the ambulance. This first seizure of his probably lasted around 45 mins to an hour.
As fast as I could, I gathered up my older boy(2yo) and got him strapped into his car seat. He is and always has been the most relaxed and easy going little man. As I finished getting him strapped into his seat, he looked at me and said...'Daddy, my shoes?'. In my haste I got him dressed in his cold weather jacket and gloves, but completely didn't notice that he had no shoes on. At that moment all my worst fears were running through my head, but my 2 year old's only concerns were focused on the fact that I forgot to put his shoes on. I've reflected on that moment hundreds of times in the years since that day...sometimes I happily laugh at his innocent comment and sometimes it makes me cry.
By the time I got to the hospital, an elderly charge nurse met me and my older boy at the ER entrance and asked if that was my boy who just got brought in with the ambulance? I told her yes and she asked me to follow her to the examination area. She told me her name...and of course it never really registered with me to remember it...and asked me for a phone number of a relative she could call to come meet us at the hospital. I guess that's one of the benefits of living in a smaller town or community. She showed me where my younger boy was being examined and where my wife was standing out of the way watching and sobbing. She also told me that she'll take my older boy to an area of the ER for children and stay with him the entire time. I immediately trusted her and let my older boy walk off, hand in hand, with her to play at a little children's nook in the hospital.
In what seemed like a very short amount of time, the ER doctors and nurses stopped my son's seizures and determined that he had suffered a brain bleed from an Arterio-Venus-Malformation(AVM) and that it had bled into his spinal fluid ventricles. The blood had made it so that his spinal fluid could not be reabsorbed into the body and the ventricles were filled up like a balloon...causing immense pressure on his brain, thus causing the seizures. They also determined that my hometown hospital was not appropriately staffed or equipped to help my infant son. They called our state police medical services to fly my son to a very prestigious hospital in a city about an hours drive from the hospital. We were not allowed to go with my son on that flight, but the flight surgeon and nurse both took my cellphone number and promised to call me with updates and status when they arrived at the other hospital. They did and my boy was rushed into the pediatric intensive care unit for evaluation.
In the mean time, my wife's parents met us at the hospital and took my older boy back to my house. My wife and I started the drive down to the other hospital. Neither of us knew exactly how to get there, but eventually found our way. When we arrived at the hospital it took us another half an hour to find where they had taken our boy. As we reached the PICU, an older doctor introduced himself as the person in charge of the unit and that he could answer our questions. They had already done a quick set of x-rays and my son was in an MRI when we arrived.
They confirmed that he had a grade IV bleed and that it was causing great pressure on his brain. They started a process to relive the pressure by sticking a very long needle into his ventricles, through his fontanel. Amazingly gruesome, but they were able to relive the pressure on his brain. But, that wasn't enough. I guess a good amount of damage was already done at this point. My son 'crashed' multiple times that night and had to be resuscitated. At one point that same doctor who was in charge of the unit pulled me aside and very calmly stated that he didn't believe my boy was going to live through the night and that I should focus more on my wife's needs than my son. I believe that woman are instantly in love with and bonded to their children from the moment they are born and that same bond takes much longer to develop between a man and his child. Needing those experiences together to develop a strong attachment. I immediately changed my focus to her and quietly feared and anticipated the moment they would come out and tell us he had died. We were not allowed to stay in the PICU, but were allowed to come in and out as often as we liked to check on my boy.
Well, he did live through that night, but he has been through a nightmare of surgeries and hospitals and set backs. Because of his brain bleed into the spinal fluid ventricles, he developed hydrocephalus and has required multiple surgeries to place sets of tubing into his brain to allow the fluid to drain down into his abdomen. That tubing has twice now needed to be replaced, requiring more hospitals and surgeries. His seizures have never gone away. He has been on numerous different types of anti-epileptic drugs to help quiet the seizures but eventually the seizures always seem to win. He has been clinically diagnosed with a syndrome called LGS...Lennox-Gastaut Syndrome. He's pretty severely mentally disabled and on the autism spectrum(PDD-NOS). My wife and I have struggled to come to grips with his abilities and inabilities. Its really hard to face the fact that your son, your beautiful little man, will never be able to strive in life and develop normally. One doctor said it best.....do your best to keep him healthy and happy and comfortable, but get a grip on your expectations. I was mad at him at the time, but I have to admit, he was was doing me a favor by helping me reset my expectations.
He turns 9 this year. I'm only now starting to learn to enjoy time with him. Its a different kind of interaction, difficult to describe. Letting go of my beliefs that he and I can beat this infliction has been very difficult. It hurts so bad to see him struggle with the most simple tasks or concepts. He can speak somewhat clearly, but you can't hold a conversation with him or have him follow simple tasks or directions...he can only echo words and phrases that he hears, no understanding. Potty training is a daily chore/fight. So far, we aren't winning that battle.
"His Story" is really about my older boy. His childhood has been sitting in hospitals and rarely having two parents to focus on his his needs, desires, and great moments. He is greatly loved and is very genuine little man. I hope he can one day understand why we haven't always been able to completely focus on him and his problems or victories. He is a great big brother and I'm always so proud of him.
Fourteen days later, the day after Christmas, my son started having seizures. I wasn't at the house at the time. My wife said that she had heard some odd noises on his baby monitor and went to his crib to check on him. She found him with his eyes clenched closed and shaking horribly. She immediately called me. I told her to call emergency service and I left as quickly as I could to get back home. As fast as I could I raced home. When I rolled into my neighborhood, I had one emergency service vehicle ahead of me and an ambulance behind. For some reason, the sight of the emergency services vehicles racing into my neighborhood really put a sense of reality into me. I had to wave down the vehicles because they made a wrong turn in my neighborhood and had them follow me down to my house.
I slid my truck to a halt in my front yard and ran into my house to see my wife crying and holding my new born. Incidentally, my older boy, who was a little over two at the time, was quietly playing with some toys in the living room. To this day I'm amazed at how relaxed and well he handled all the commotion. The EMS personnel ran in behind me and quickly snatched my boy out of my wife's arms to try and ***** his state. My wife and I were both in shock. I found out later that I held up the EMS personnel for about 30 seconds, trying to get to my son, because I was blocking access to him and my wife. I barely remember any of that. They quickly determined that he needed to go to our local hospital and that only one of the parents could ride along in the ambulance. My older boy and I would have to follow them to the hospital and I was warned not to try to keep up(really?). The ambulance left with both my wife and newborn struggling in the back. They were not able to arrest his seizures entirely in the ambulance. This first seizure of his probably lasted around 45 mins to an hour.
As fast as I could, I gathered up my older boy(2yo) and got him strapped into his car seat. He is and always has been the most relaxed and easy going little man. As I finished getting him strapped into his seat, he looked at me and said...'Daddy, my shoes?'. In my haste I got him dressed in his cold weather jacket and gloves, but completely didn't notice that he had no shoes on. At that moment all my worst fears were running through my head, but my 2 year old's only concerns were focused on the fact that I forgot to put his shoes on. I've reflected on that moment hundreds of times in the years since that day...sometimes I happily laugh at his innocent comment and sometimes it makes me cry.
By the time I got to the hospital, an elderly charge nurse met me and my older boy at the ER entrance and asked if that was my boy who just got brought in with the ambulance? I told her yes and she asked me to follow her to the examination area. She told me her name...and of course it never really registered with me to remember it...and asked me for a phone number of a relative she could call to come meet us at the hospital. I guess that's one of the benefits of living in a smaller town or community. She showed me where my younger boy was being examined and where my wife was standing out of the way watching and sobbing. She also told me that she'll take my older boy to an area of the ER for children and stay with him the entire time. I immediately trusted her and let my older boy walk off, hand in hand, with her to play at a little children's nook in the hospital.
In what seemed like a very short amount of time, the ER doctors and nurses stopped my son's seizures and determined that he had suffered a brain bleed from an Arterio-Venus-Malformation(AVM) and that it had bled into his spinal fluid ventricles. The blood had made it so that his spinal fluid could not be reabsorbed into the body and the ventricles were filled up like a balloon...causing immense pressure on his brain, thus causing the seizures. They also determined that my hometown hospital was not appropriately staffed or equipped to help my infant son. They called our state police medical services to fly my son to a very prestigious hospital in a city about an hours drive from the hospital. We were not allowed to go with my son on that flight, but the flight surgeon and nurse both took my cellphone number and promised to call me with updates and status when they arrived at the other hospital. They did and my boy was rushed into the pediatric intensive care unit for evaluation.
In the mean time, my wife's parents met us at the hospital and took my older boy back to my house. My wife and I started the drive down to the other hospital. Neither of us knew exactly how to get there, but eventually found our way. When we arrived at the hospital it took us another half an hour to find where they had taken our boy. As we reached the PICU, an older doctor introduced himself as the person in charge of the unit and that he could answer our questions. They had already done a quick set of x-rays and my son was in an MRI when we arrived.
They confirmed that he had a grade IV bleed and that it was causing great pressure on his brain. They started a process to relive the pressure by sticking a very long needle into his ventricles, through his fontanel. Amazingly gruesome, but they were able to relive the pressure on his brain. But, that wasn't enough. I guess a good amount of damage was already done at this point. My son 'crashed' multiple times that night and had to be resuscitated. At one point that same doctor who was in charge of the unit pulled me aside and very calmly stated that he didn't believe my boy was going to live through the night and that I should focus more on my wife's needs than my son. I believe that woman are instantly in love with and bonded to their children from the moment they are born and that same bond takes much longer to develop between a man and his child. Needing those experiences together to develop a strong attachment. I immediately changed my focus to her and quietly feared and anticipated the moment they would come out and tell us he had died. We were not allowed to stay in the PICU, but were allowed to come in and out as often as we liked to check on my boy.
Well, he did live through that night, but he has been through a nightmare of surgeries and hospitals and set backs. Because of his brain bleed into the spinal fluid ventricles, he developed hydrocephalus and has required multiple surgeries to place sets of tubing into his brain to allow the fluid to drain down into his abdomen. That tubing has twice now needed to be replaced, requiring more hospitals and surgeries. His seizures have never gone away. He has been on numerous different types of anti-epileptic drugs to help quiet the seizures but eventually the seizures always seem to win. He has been clinically diagnosed with a syndrome called LGS...Lennox-Gastaut Syndrome. He's pretty severely mentally disabled and on the autism spectrum(PDD-NOS). My wife and I have struggled to come to grips with his abilities and inabilities. Its really hard to face the fact that your son, your beautiful little man, will never be able to strive in life and develop normally. One doctor said it best.....do your best to keep him healthy and happy and comfortable, but get a grip on your expectations. I was mad at him at the time, but I have to admit, he was was doing me a favor by helping me reset my expectations.
He turns 9 this year. I'm only now starting to learn to enjoy time with him. Its a different kind of interaction, difficult to describe. Letting go of my beliefs that he and I can beat this infliction has been very difficult. It hurts so bad to see him struggle with the most simple tasks or concepts. He can speak somewhat clearly, but you can't hold a conversation with him or have him follow simple tasks or directions...he can only echo words and phrases that he hears, no understanding. Potty training is a daily chore/fight. So far, we aren't winning that battle.
"His Story" is really about my older boy. His childhood has been sitting in hospitals and rarely having two parents to focus on his his needs, desires, and great moments. He is greatly loved and is very genuine little man. I hope he can one day understand why we haven't always been able to completely focus on him and his problems or victories. He is a great big brother and I'm always so proud of him.
By:
Grubsknif
Age:
41-45
