Exorcising some of my demons (read at your own risk)
In this edition of Sat’s Old As Hell Livejournal that Needs a Comeback, I am gonna possibly reduce a few of you remaining readers to tears. I really have a LOT that I need to process that I have been struggling with for so long now. When I switched over to Facebook in 2009 it was more of a convenient format for me to use at the time. I became quickly addicted to the games and apps and just found it brilliant. The more I have dealt with it over the last 7 years, the less I have liked it. With every new change I have considered leaving it more and more. With the recent edition of the “memories” feature, I have a consistent taste of bile in my mouth while the site itself insists on showing me things that I wish I could forget. So that brings me back to close to where I left off here in my last post in 2010. I am going to go back to 2008 though so as to fill everybody in on what all has happened. I will be doing this over several posts since there is a LOT of stuff to cover. In truth, this isn’t even really about updating anybody else, but it IS about my having somewhere to chronicle all of this for my future viewing when I have the will to remember and look back. So many people have told me that I need to write a book, but I have no idea where to even start, nor do I feel that anybody would want to read what would essentially be a mother crying and slobbering through what could vaguely be defined as sentences so as to tell her tale and possibly sell tissues. So without any more rambling, let us take a journey back a ways and let this sad sad mother tell her story.
In loving memory of Guinness Prescott Clark May 22, 2009- February 24, 2012
No mother ever plans to lay her child to rest. No mother ever really thinks about it unless an horrific event happens. As I sit here receiving text messages from my oldest child while she is bored in class I can’t help but think of how precious she is to me. Watching her grow up has improved me as a person and taught me so much that I could never ever have learned otherwise. We all have our funny stories of what our kids have taught us. I could tell you a whole bunch of stories of funny things my kids have done, but that isn’t my purpose in this writing. I am here to tell you about the child that never made it past the mental age of a newborn, the child that turned this family on its head and left us all with holes in our hearts that have healed in some ways, but never will in others. The child that changed me both for the better and for the worse. The child that had to die so that another child could be born.
It was two years of actively trying for a child that eventually became the boy known as Guinness Prescott. My dream was to have three children and for those two years I dreamed of this little boy with red hair and green eyes and I knew that he would come to be mine. I had no clue as to when he would make his appearance, but that he inevitably would. In September of 2008, after a single go at fertility treatments, I found out I was pregnant a few days before my husband’s 30th birthday. Most folks don’t find a stick covered in pee to be a great birthday gift, but for him it was. This is the man that was so afraid of miscarriage with our daughter that he refused to tell anybody until I was showing, but this time around he was telling anybody that would listen within minutes of our finding out.
At my six week ultrasound and blood draw, it was noted that I had lower levels of progesterone than what my doctor wanted to see, so I was placed on medication to help me for fear that I would end up dealing with yet another miscarriage after having had so many throughout the years. I was absolutely terrified of losing a baby after so long of just nothing happening. After a couple of weeks of the medication, a further blood draw and ultrasound showed that we had a beating little heart and a baby very much forming. Looking back, I have my suspicions that my body was trying to give me a huge red flag alert and take care of what would become a crushing loss for me. When you are so desperate for something though, it is often hard to see those things and intervention is the common sense choice. We don’t think too heavily on WHY our bodies do these things, so much as that they just did.
I took a lot of flack for his name that we had chosen. We had discussed having a name that was strong but relating to our heritage. We are also both enormous nerds. Guinness did indeed come from the beer. It has always been something that me and my husband have been able to enjoy together and the cake for the baby shower was in the shape of a pint of Guinness because of it. His middle name of Prescott came from an Intel code name for a computer chip. My husband is a tech through and through and when I heard the name I liked it, a lot. My grandparents hated the name. In fact, they actually asked me to reverse it to Prescott Guinness instead and I refused. I hated growing up being the fifth Amber in the hallway at school. Having grown up with that being a common thing, I decided at a very early age that I wanted all of my kids to have names that weren’t common. I didn’t have a burning need to have a child named after some family member or character from a book like so many of my relations have been. There is nothing wrong with any of those names, but they just weren’t what I wanted for my own children and my husband was onboard so why not?!
Having had a prior c-section for my first child, I was scheduled for a second one for this child even if I decided to attempt a standard delivery. Four days before that scheduled date, I landed in the hospital at 7:30am after having spent the previous four hours rolling around screaming from what I assumed was the most horrific case of heartburn ever. I ate the antacids, drank water, drank pop, all of my tricks to stop it failed and the burn just kept intensifying until I felt like my entire chest was on fire. My husband was the one that made the call that I was going to the hospital no matter what. When I got there, my blood was drawn and they found that my liver enzymes were through the roof and I was written up as having preeclampsia. With all of that being noted, they took me for an emergency section after finding the baby was breech; feet down.
An entire team of women delivered my son. I even joked with the anesthesiology student that was giving me my spinal block to “not screw up!” Everybody was feeling excited and when I heard the cry come from my son upon his birth I felt a whole host of emotions from pride to happiness to fear. Every single child is different. Would I go on to watch this child grow up to be something great? Would he talk early like his sister had? Would he be up and walking before he was a year old? All of those fluffy mom thoughts were on my mind heavily. It all became real when they brought him to me a short while later after his getting a bath and I saw his auburn hair that I had already seen for three years in my dreams.
Those first few weeks were blissful. I didn’t suffer from the severe exhaustion and post partum depression I had with my daughter. (I opted to be medicated immediately after birth due to the severe PPD I had suffered with my first child. I do not regret that decision at all.) I didn’t suffer from the fear and anxiety of what to do when the baby wakes up in the middle of the night crying and inconsolable. It all felt right and familiar and I greeted it with a smile. In fact, when I had to have my gall bladder removed two weeks after his birth (the cause of that “heartburn” was gall stones), I was more miserable with having to be in the hospital, because I couldn’t be with my kids, than I was with the pain I was experiencing. I begged my husband to bring them up to the family room just for me to see them and my dedication was such that when he took our daughter to the food court, I ended up pushing an IV pole in one hand while holding a baby, a bottle, and formula in the other so as to feed my crying son. Crazy mom that I was, I didn’t care that I was technically sick.
At four weeks of age, my hopes, dreams, and positive attitude shattered. We weren’t even a full month out from his birth when we took the kids to get their pictures taken. I was with my grandmother that day and within just about two hours we witnessed my son acting strangely. He would turn really red in the face and breathe really heavily and be unable to respond. His little body would pull off to the side and act like he was stuck there no matter what either of us did. These would go on for anywhere from a minute to about five minutes and then he would release and just be sleepy. My grandmother, not having completed high school and prone to taking old wive’s tales as gospel, told me that he was having “facial spasms”. Whatever the hell that is. I had my own suspicions that I took home to the internet and some other mom friends of mine.
Having sent a few text messages out to other moms as well as asking them about it when I took my daughter to dance class that evening, they recommended seeing if I could get it on video. What I ended up getting on video was even more horrific as I watched my son twitch from opposite sides of his body as I sat there filming what I knew full well was a seizure. As I held still, the tears rolled down my face knowing that I couldn’t help him and terrified for what this meant for him and his future. Knowing that two other parents I knew had children that suffered epilepsy, I knew that they could “outgrow” it and that it wasn’t uncommon in childhood. The internet did little but scare the crap right out of me after stumbling upon a thread on a forum with a mom talking about her son soon going in for a full hemispherectomy. For those that don’t know that term, it is a removal of half of the brain. (There are some more intricate things involved as well, but for simplicity of the matter, I am sticking with this simple definition. If you wish to discuss it further, you know where to find me.) I did immediately call his pediatrician and schedule an emergency appointment for the next day. And you can be damn sure I didn’t sleep at all that night as I watched him have a few more episodes and just felt my mind and life spiraling into some pit of exhausted despair.
I took my camera with me to the doctor’s office and when the doctor viewed the video, she left the room in tears. She couldn’t even say anything to me after viewing it. (The video is rough for me to see even to this day and I have seen just about everything at this point.) What she did do was immediately call a neurologist not far from the office and when she reappeared in the room she told me that what I had caught on film was most definitely a seizure and that they were expecting me at the neurologist’s office immediately. I wasn’t even charged for the visit to the office as she made sure to write on the chart “no charge”. I guess it shocked her as well and that she wasn’t used to seeing these things. I don’t really know and I was too off kilter to ask.
We proceeded to that office and met what would come to be the worst doctor I have ever known in my life. I have met a whole host of doctors, I have threatened shitty doctors with physical harm, I have even come near to punching a doctor in his arrogant face, but this one took the cake and earned the title of World’s Biggest Asshole Ever! He came in, did his exam of my infant son, then sat down to flip through a notebook several times, write a few more things, and then handed me a prescription. His words were “Your son is having focal seizures.” That was all he said before he walked from the room. No comfort, no prognosis, no nothing! He walked away from a mother who was confused and in tears as if she was just another nuisance and waste of his time. Thankfully the nurse that followed him was much better at bedside manner. As I was packing my son up into his carseat and crying, she came in and gave me a big hug and told me further details and gave me some actual information, including scheduling an MRI of my son’s brain.
We never made it to that MRI appointment. In fact, we barely made it two weeks. We gave him his meds religiously, but we were still seeing several seizures per day and they seemed to cluster. Not only were we seeing multiple seizures, but we were seeing multiple TYPES of seizures. Most people think of just your standard tonic clonic (former Grand Mal) seizure if they have never experienced epilepsy first hand. There are so many different types of seizures though and I had to learn all of this within just a couple of days. I was beyond thankful that I live in the age of a resource like the internet. Within a few hours time of just reading anything I could get my eyes onto, I had learned so much and knew what to look for in my son. Sometimes though, knowledge can lead to pain, because once I knew what to look for, I saw that he was seizing quite often. Something was very clearly wrong with my child that I had dreamed of for so long.
When he suffered 20 seizures in just a few hours time, my grandmother told me that I needed to take him to the Emergency Room immediately. I put in a call to his doctor and while I waited and waited for him to call back, Guinness suffered another five seizures. Enough as enough and we headed to the ER. My grandmother drove me while my husband met me there. Once there they paged his neurologist who didn’t immediately call back. In fact, he didn’t call back until over two hours later when they called him again and he finally felt we were worthy of his time. By then, my son had suffered a terrible generalized seizure that left him stuck on his side making this shrill and strange cry that we had never heard. As the doctors and nurses came running and were literally screaming for Ativan to stop the seizure, my legs went out from under me and for the first time in many years, I accepted prayer from the chaplain. In that moment, even if I felt nothing as he poured out his belief in his god, it was something familiar and when everything felt so foreign, that dose of familiarity was what I needed.
I am gonna stop here for the day. I have a LOT more to tell, but I need to stop here due to no longer being able to see my screen through the tears. Right now I need a cigarette and possibly a stiff drink. I knew this would be a painful process. I didn’t go into it thinking it would be easy. What I can say is that it does feel good to get it out. Grief is a long and painful process that I have struggled with for several years now. I just need to keep going when I am next ready. Feel free to comment if you want to, but don’t feel required. I know only a few people read this now and I know that those that do mostly know what happened. This is for ME though. I need this as part of my healing process. Feeling like I have plateaued for too long, I am gonna continue to try to progress once again. Take care of you readers. I will post again soon with the next part of this sad reality that I have lived.
In loving memory of Guinness Prescott Clark May 22, 2009- February 24, 2012
No mother ever plans to lay her child to rest. No mother ever really thinks about it unless an horrific event happens. As I sit here receiving text messages from my oldest child while she is bored in class I can’t help but think of how precious she is to me. Watching her grow up has improved me as a person and taught me so much that I could never ever have learned otherwise. We all have our funny stories of what our kids have taught us. I could tell you a whole bunch of stories of funny things my kids have done, but that isn’t my purpose in this writing. I am here to tell you about the child that never made it past the mental age of a newborn, the child that turned this family on its head and left us all with holes in our hearts that have healed in some ways, but never will in others. The child that changed me both for the better and for the worse. The child that had to die so that another child could be born.
It was two years of actively trying for a child that eventually became the boy known as Guinness Prescott. My dream was to have three children and for those two years I dreamed of this little boy with red hair and green eyes and I knew that he would come to be mine. I had no clue as to when he would make his appearance, but that he inevitably would. In September of 2008, after a single go at fertility treatments, I found out I was pregnant a few days before my husband’s 30th birthday. Most folks don’t find a stick covered in pee to be a great birthday gift, but for him it was. This is the man that was so afraid of miscarriage with our daughter that he refused to tell anybody until I was showing, but this time around he was telling anybody that would listen within minutes of our finding out.
At my six week ultrasound and blood draw, it was noted that I had lower levels of progesterone than what my doctor wanted to see, so I was placed on medication to help me for fear that I would end up dealing with yet another miscarriage after having had so many throughout the years. I was absolutely terrified of losing a baby after so long of just nothing happening. After a couple of weeks of the medication, a further blood draw and ultrasound showed that we had a beating little heart and a baby very much forming. Looking back, I have my suspicions that my body was trying to give me a huge red flag alert and take care of what would become a crushing loss for me. When you are so desperate for something though, it is often hard to see those things and intervention is the common sense choice. We don’t think too heavily on WHY our bodies do these things, so much as that they just did.
I took a lot of flack for his name that we had chosen. We had discussed having a name that was strong but relating to our heritage. We are also both enormous nerds. Guinness did indeed come from the beer. It has always been something that me and my husband have been able to enjoy together and the cake for the baby shower was in the shape of a pint of Guinness because of it. His middle name of Prescott came from an Intel code name for a computer chip. My husband is a tech through and through and when I heard the name I liked it, a lot. My grandparents hated the name. In fact, they actually asked me to reverse it to Prescott Guinness instead and I refused. I hated growing up being the fifth Amber in the hallway at school. Having grown up with that being a common thing, I decided at a very early age that I wanted all of my kids to have names that weren’t common. I didn’t have a burning need to have a child named after some family member or character from a book like so many of my relations have been. There is nothing wrong with any of those names, but they just weren’t what I wanted for my own children and my husband was onboard so why not?!
Having had a prior c-section for my first child, I was scheduled for a second one for this child even if I decided to attempt a standard delivery. Four days before that scheduled date, I landed in the hospital at 7:30am after having spent the previous four hours rolling around screaming from what I assumed was the most horrific case of heartburn ever. I ate the antacids, drank water, drank pop, all of my tricks to stop it failed and the burn just kept intensifying until I felt like my entire chest was on fire. My husband was the one that made the call that I was going to the hospital no matter what. When I got there, my blood was drawn and they found that my liver enzymes were through the roof and I was written up as having preeclampsia. With all of that being noted, they took me for an emergency section after finding the baby was breech; feet down.
An entire team of women delivered my son. I even joked with the anesthesiology student that was giving me my spinal block to “not screw up!” Everybody was feeling excited and when I heard the cry come from my son upon his birth I felt a whole host of emotions from pride to happiness to fear. Every single child is different. Would I go on to watch this child grow up to be something great? Would he talk early like his sister had? Would he be up and walking before he was a year old? All of those fluffy mom thoughts were on my mind heavily. It all became real when they brought him to me a short while later after his getting a bath and I saw his auburn hair that I had already seen for three years in my dreams.
Those first few weeks were blissful. I didn’t suffer from the severe exhaustion and post partum depression I had with my daughter. (I opted to be medicated immediately after birth due to the severe PPD I had suffered with my first child. I do not regret that decision at all.) I didn’t suffer from the fear and anxiety of what to do when the baby wakes up in the middle of the night crying and inconsolable. It all felt right and familiar and I greeted it with a smile. In fact, when I had to have my gall bladder removed two weeks after his birth (the cause of that “heartburn” was gall stones), I was more miserable with having to be in the hospital, because I couldn’t be with my kids, than I was with the pain I was experiencing. I begged my husband to bring them up to the family room just for me to see them and my dedication was such that when he took our daughter to the food court, I ended up pushing an IV pole in one hand while holding a baby, a bottle, and formula in the other so as to feed my crying son. Crazy mom that I was, I didn’t care that I was technically sick.
At four weeks of age, my hopes, dreams, and positive attitude shattered. We weren’t even a full month out from his birth when we took the kids to get their pictures taken. I was with my grandmother that day and within just about two hours we witnessed my son acting strangely. He would turn really red in the face and breathe really heavily and be unable to respond. His little body would pull off to the side and act like he was stuck there no matter what either of us did. These would go on for anywhere from a minute to about five minutes and then he would release and just be sleepy. My grandmother, not having completed high school and prone to taking old wive’s tales as gospel, told me that he was having “facial spasms”. Whatever the hell that is. I had my own suspicions that I took home to the internet and some other mom friends of mine.
Having sent a few text messages out to other moms as well as asking them about it when I took my daughter to dance class that evening, they recommended seeing if I could get it on video. What I ended up getting on video was even more horrific as I watched my son twitch from opposite sides of his body as I sat there filming what I knew full well was a seizure. As I held still, the tears rolled down my face knowing that I couldn’t help him and terrified for what this meant for him and his future. Knowing that two other parents I knew had children that suffered epilepsy, I knew that they could “outgrow” it and that it wasn’t uncommon in childhood. The internet did little but scare the crap right out of me after stumbling upon a thread on a forum with a mom talking about her son soon going in for a full hemispherectomy. For those that don’t know that term, it is a removal of half of the brain. (There are some more intricate things involved as well, but for simplicity of the matter, I am sticking with this simple definition. If you wish to discuss it further, you know where to find me.) I did immediately call his pediatrician and schedule an emergency appointment for the next day. And you can be damn sure I didn’t sleep at all that night as I watched him have a few more episodes and just felt my mind and life spiraling into some pit of exhausted despair.
I took my camera with me to the doctor’s office and when the doctor viewed the video, she left the room in tears. She couldn’t even say anything to me after viewing it. (The video is rough for me to see even to this day and I have seen just about everything at this point.) What she did do was immediately call a neurologist not far from the office and when she reappeared in the room she told me that what I had caught on film was most definitely a seizure and that they were expecting me at the neurologist’s office immediately. I wasn’t even charged for the visit to the office as she made sure to write on the chart “no charge”. I guess it shocked her as well and that she wasn’t used to seeing these things. I don’t really know and I was too off kilter to ask.
We proceeded to that office and met what would come to be the worst doctor I have ever known in my life. I have met a whole host of doctors, I have threatened shitty doctors with physical harm, I have even come near to punching a doctor in his arrogant face, but this one took the cake and earned the title of World’s Biggest Asshole Ever! He came in, did his exam of my infant son, then sat down to flip through a notebook several times, write a few more things, and then handed me a prescription. His words were “Your son is having focal seizures.” That was all he said before he walked from the room. No comfort, no prognosis, no nothing! He walked away from a mother who was confused and in tears as if she was just another nuisance and waste of his time. Thankfully the nurse that followed him was much better at bedside manner. As I was packing my son up into his carseat and crying, she came in and gave me a big hug and told me further details and gave me some actual information, including scheduling an MRI of my son’s brain.
We never made it to that MRI appointment. In fact, we barely made it two weeks. We gave him his meds religiously, but we were still seeing several seizures per day and they seemed to cluster. Not only were we seeing multiple seizures, but we were seeing multiple TYPES of seizures. Most people think of just your standard tonic clonic (former Grand Mal) seizure if they have never experienced epilepsy first hand. There are so many different types of seizures though and I had to learn all of this within just a couple of days. I was beyond thankful that I live in the age of a resource like the internet. Within a few hours time of just reading anything I could get my eyes onto, I had learned so much and knew what to look for in my son. Sometimes though, knowledge can lead to pain, because once I knew what to look for, I saw that he was seizing quite often. Something was very clearly wrong with my child that I had dreamed of for so long.
When he suffered 20 seizures in just a few hours time, my grandmother told me that I needed to take him to the Emergency Room immediately. I put in a call to his doctor and while I waited and waited for him to call back, Guinness suffered another five seizures. Enough as enough and we headed to the ER. My grandmother drove me while my husband met me there. Once there they paged his neurologist who didn’t immediately call back. In fact, he didn’t call back until over two hours later when they called him again and he finally felt we were worthy of his time. By then, my son had suffered a terrible generalized seizure that left him stuck on his side making this shrill and strange cry that we had never heard. As the doctors and nurses came running and were literally screaming for Ativan to stop the seizure, my legs went out from under me and for the first time in many years, I accepted prayer from the chaplain. In that moment, even if I felt nothing as he poured out his belief in his god, it was something familiar and when everything felt so foreign, that dose of familiarity was what I needed.
I am gonna stop here for the day. I have a LOT more to tell, but I need to stop here due to no longer being able to see my screen through the tears. Right now I need a cigarette and possibly a stiff drink. I knew this would be a painful process. I didn’t go into it thinking it would be easy. What I can say is that it does feel good to get it out. Grief is a long and painful process that I have struggled with for several years now. I just need to keep going when I am next ready. Feel free to comment if you want to, but don’t feel required. I know only a few people read this now and I know that those that do mostly know what happened. This is for ME though. I need this as part of my healing process. Feeling like I have plateaued for too long, I am gonna continue to try to progress once again. Take care of you readers. I will post again soon with the next part of this sad reality that I have lived.