The Real Superman Part XII

The Real Superman Part XII

By Jeff King

We began hearing a term called VNS. This procedure was supposed to be working miracles for people who suffered from intractable epilepsy. I didn’t even know what VNS was, let alone how it was done, so I began to research it. I went to the Epilepsy website and began to read about this new and innovative procedure that was helping tens of thousands of people who suffered from epilepsy. They termed this new procedure as, “the pacemaker for the brain” (Schachter, 2013). This device is placed under the skin on the left side of the chest. The wire runs to the Vagus nerve which is a part of the autonomic nervous system. This nerve controls functions of the body which are not under voluntary control. The neurologist sets the devices impulse to send a small jolt of electricity to the Vagus nerve. In theory this can stop a seizure from happening. You are also given a magnet that you can use for any onset signs of seizures, or when a seizure comes on. You placed the magnet over the stimulator outside the chest and in theory, it stops the seizure. You can learn more about it at http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns. This sounded wonderful, a very promising weapon against seizures. The more I read about it as well as testimonies from patients and parents and family members of patients the more I liked it. My wife had also checked it out and we were determined to talk to Dr. Rubenstein about it.

On Dylan’s next appointment to see him he asked us how everything had been going for Dylan, we explained how Dylan just laid around very lethargic and was continuing to have up to 40 seizures a day even on the medicine. We asked him to help us order a special wheelchair for Dylan, because, I could no longer carry him around because, he was getting so heavy, plus he was dead weight. He agreed and put a request into Medicaid. He started talking about maybe introducing a new medication into the mix. Terri and I quickly cut him off and almost in unison said that we wanted to try the VNS on Dylan. He listened patiently and then said, “I couldn’t agree more.” I am glad that you both are very pro-active in Dylan’s health and you both are well informed. I definitely believe that he is an excellent candidate for this procedure.” We talked a little more about it and he gave us all the details about what to expect and what side effects could also occur with this procedure. We all came to the agreement that Dylan would be fitted with the VNS and we began to plan the date of his procedure. His surgery was set for December 22nd, 2011. Which was about three months away.

Medicaid had approved him for his wheelchair, which was great for us, because now we were able to go to the store and take Dylan in with us. Before that I would sit in the car with him while Terri went inside to do the grocery shopping, which was okay, but I believe it was better if Dylan was able to go into the stores too. I mean his life consisted entirely of laying around having seizures. He no longer watched any TV. He was just there. It sounds cold and harsh, but that’s the best way I can describe him. I can tell you as a father, I cried many tears as I watched him slowly disappear his whole personality was vanquished. It was a very sad and horrible existence that he was living. I thought about the Metallica song “One” “Darkness imprisoning me All that I see Absolute horror I cannot live I cannot die Trapped in myself Body my holding cell” (James Hetfield Lars Ulrich, 1993).

I thought how sad, his body was his holding cell! This made me weep hot tears of sorrow ran down my face! I was sure hoping that the VNS would deliver my son from that darkened abyss that he disappeared into.

When we got his wheelchair we decided to go shopping at our local grocery store. I got the chair out of the trunk and set it up. I got him out of the back seat and placed him in his chair. We went grocery shopping. He just sat there impassively, but at least he was out and about, so that was a good thing. We finished shopping and we go outside. I was pushing Dylan and Terri was pushing the shopping cart. There was a car blocking the handicap aisle that was in front of the store. Terri yelled out, “How rude!” The driver of the vehicle pulled up out of the way, but started cussing us out. I told the lady that she didn’t want to mess with my wife and that she was illegally parked there anyway. She got out of her car, but stood inside her car door and hurled insults at us. Then she says to me, “You’re not even a real man, because you couldn’t even create a whole child!” Man I was enraged, but Terri was twice as angry. She wanted to go after this vulgar extremely evil women, but she didn’t. She just walked away! What an offensive wicked thing she had said! I am not going to lie, I cursed her and said that one day, that she would reap what she had sown. She reaped hate she will definitely sow that same hate! This was just another of the many incidents we would have along this journey. The hate and the evil that spews from the mouth of people against people with special needs, children with special needs! I never hated anyone in my entire life, but as God is my witness, if that woman would have choked to death on her hateful words, I would have begun to cheer right then and there. Don’t get me wrong, I really don’t wish those type of things on anyone, but it was very hurtful. It just made me hurt for my son and I just couldn’t believe this woman would say such an ugly thing about a child. (To be continued.)

The Real Superman Part X

The Real Superman Part X

By Jeff King

Over the next several month’s Dylan continued to have seizures he had Grand Mal, Absence, Myoclonic, Clonic, Tonic, atonic. You name it, he had it. The seizure activity was so frequent, my wife and I often wondered how long can Dylan survive like this. These dark, demonic beast had taken control over my son’s body and mind. Between the Clonazepam, and the seizures, this little boy was absolutely fried. I remember crying leave him the hell alone! After he would shake and violently convulse. I felt like Father Damien Karras in the Exorcists when Regan was convulsing and being distorted by the demon that had possessed her! I to screamed out “Take me! Come into me!” Leave him the hell alone!  He doesn’t deserve this! He hasn’t done one thing to deserve this! He is an innocent child! This demon was slowly consuming my baby and I felt powerless. I couldn’t do a damn thing to help him. What a dark feeling. I felt like the Devil himself had come to dwell in our household. This sinister being that held my son hostage had made me realize that this was indeed a dire situation. I started remembering the scriptures “Jesus I know, and Paul I know; but who are you?” Acts 19:15 I felt just like one of the Seven Sons of Sceva, because this beast didn’t know me, but it sure was very acquainted with my son and this demon wasn’t going anywhere. I remember the words that Jesus had spoken in Matthew 17:21 “However, this kind goes not out but by prayer and fasting.” I had prayed, I had fasted I had done everything that I could possibly think of doing, but this one wasn’t going a damn place. It sure wasn’t going back to the hell that it came from, but it did bring hell with it and it was unleashing every dark power it could unto my son and all we could do is watch helplessly! “My God, My God, why have you forsaken me?” I cried those very words. It stung my heart. The feeling of helplessness and hopelessness had taken control of me and my wife. We weren’t just walking through the valley of the shadow of death we were neck deep in the mire of it!

We went back to the neurologist who now prescribed another medication that was supposed to be great for seizures. It was called Keppra and it isn’t a good drug either.  Some of the side effects are horrible and Dylan was becoming more and more non-verbal so he didn’t have a voice to tell us how he was feeling, or what this poison was doing to him. Just some of the side effects were: Hallucinations, unusual thoughts or behavior, suicidal thoughts, bruising, severe tingling, numbness, pain, muscle weakness; feeling very weak or tired, fever, chills, body aches, flu symptoms, sores in your mouth and throat, problems with walking or movement

Imagine your child taking a medication approved by the FDA that can cause hallucinations or suicidal thoughts and your child cannot tell you how he’s feeling? Over the first several weeks on this poison Dylan began to bruise more easily every time we turned around Dylan had a new bruise on another part of his body. This certainly wasn’t the worst of it though. Dylan became weak and very lethargic. He would simply lay on the couch and didn’t do anything. He didn’t even enjoy watching any of his cartoons anymore. The little boy who was once so happy and lively had become a shell of his former self. I cried often. As a man society seems to believe that if you cry then it is a sign of weakness. I didn’t give a damn about what society thought about me. My son who once was filled with such joy and love was now this empty being that was now impassive and cold. His beautiful voice was now gone and would never return. The singing had stopped, the laughter had stopped the joy ceased to exist. We were left with memories of a different Dylan. A Dylan that used to run and play and joke and sing and talk and laugh. These demons had robbed his very soul. Between the poisons we were pumping into his body and the seizures which still had control over him, my little boy was gone! Terri and I went through the 5 phases of grief all over again; only this time it seemed much worse.

This had an effect on the entire family. The kids stopped playing with Dylan, because, he wasn’t interested in playing or really doing anything. He would just lay around. At school he regressed and no longer did anything that he used to. The teachers let him sleep most of the time, because the seizure activity was so bad that he would seize sometimes up to fifty times a day and that was with the two medications that he was on. We now had gotten him a wheel chair, because he could no longer walk. Just a few short years ago, Dylan ran in the Special Olympics. This child couldn’t even crawl, let alone walk!

This was indeed one of the darkest times in our lives. The journey we were on had driven us across an arid desolate wilderness. There were no oasis in site and we were getting ready to climb the highest mountain facing the toughest terrain that we would have to encounter yet. If there were a light at the end of this tunnel we had not spotted it yet. We were left forsaken and alone, but we had to continue to trudge on.

The Real Superman Part VIIII

The Real Superman Part VIIII

By Jeff King

We made an appointment to see a Neurologist at Sinai hospital in Baltimore city. The Neurologist was supposedly one of the best around. We met him and he had all of Dylan’s hospital records from the previous seven years. Our first impression was a good one of this gentleman. He seemed very knowledgeable and genuinely caring. He played with Dylan and made us feel at ease. He talked about a treatment program that we should start and the first medicine he prescribed for Dylan was a seizure medication known as Lamictal. Lamictal would have the least effect on Dylan’s cognitive skills, so the neurologist explained. We began to give him this new medicine and right away, the seizures stopped. He was doing so well on this medication. We felt like the seizure activity that he had been experiencing was just a little hic up in his overall health, but now with this new medication, he would be back on track.

He continued to make progress and the seizures hadn’t effected his cognitive skills as of yet. He was loving on a new show Yo Gabba Gabba and his favorite character on this program was a little fuzzy monster-like dude named Broobie. Dylan quickly learned the songs on this show and began to sing them. His favorite was called “Party in my Tummy” I still remember Dylan saying, “Does the green beans want to go to the party in my tummy?” He would wait several seconds before answering that question, “Yeah” then he’d break into the song, “There’s a party in my tummy, so yummy, so ,yummy, there’s a party in my tummy!” You get the gist of it.

We weren’t really concerned about Dylan’s cognitive skills. He continued to learn how to say words and use sentences. We understood that most of his language was mimicking what he heard, but, he did know and understand so much. Maybe we should have been more concerned, but at the time there was no indication that he would regress and become nonverbal.

After about two weeks of taking the Lamictal Terri noticed a slight rash around his mouth. We weren’t sure what it was so she called the neurologist to voice our concerns. He asked us to watch him overnight and see if the rash got worse. He never told us to stop giving Dylan the Lamictal. The next day the rash had spread all over his body and he was covered in big blotches. His skin looked as if he had an extreme sunburn. We called the neurologist and he told us to bring him into his office right away. We took him into his office and he said, “I was hoping that this wasn’t going to happen? He’s having an allergic reaction to the medication. He then prescribed some antibiotics to begin giving to Dylan right away. He told us to discontinue the Lamictal. We took him home and gave him the antibiotic. It was about a week before he was better. The neurologist then prescribed Clonazepam tablets to begin giving him. These things would begin to have Dylan spacing out. He slowly began his dark decent into an abysmal place where we weren’t sure if we could ever get him back from.

We had gone through some very tough times before Dylan began to have these seizures. I have already mentioned how Terri went into the hospital to have surgery to remove her gallbladder. It was supposed to be a very quick and easy procedure; a same day procedure. It would be done with the doctor using endoscopic surgery. This minimally invasive surgery was supposed to be an easier and safer way for Terri to have her gallbladder removed, however, the surgeon ended up cutting a bile duct and bile from her liver began draining into her stomach. She nearly died and she had to be transferred to John Hopkins Hospital where a well renowned surgeon who had invented the surgery to fix her practiced at. He saved her life. I touched on this just a little, because about three years after Dylan was born, Terri developed a pretty big hernia, most likely from carrying around Dylan. She had to schedule another surgery with the doctor who had created a new bile duct using part of her large intestine to do it. He would perform the hernia operation, because, we didn’t trust any other hospital or doctor around. She had complications and ended up in the hospital for two weeks. She was so upset, because she kept thinking Dylan would forget who she was. He slept with me on the couch for those two weeks, which was a binding experience for the both of us.

When Terri was released from the hospital, I tried to take some time off the job I had been working for the last ten months, but, because I hadn’t been there for the entire year, I was told by their HR department that I could not do it. I had no choice to resign to take care of Terri and the children. It was a tough dark time in our lives. I can’t mention the name of the company I was working for at the time, because they may sue me if I was to, but let’s just say that they were an up and coming Baltimore Clothing company that has ties to the NFL and whose clothes can now be seen in movies, and even other sports franchises. They were not very family friendly and it is sad that the owner got rich off the backs of his workers and didn’t care if those workers had families or more important things to attend to. I could say Karma is well you know. I know I am being so cliché. Anyway, it is my sincerest hope that the owner will one day reap what he has sown!

I mention these things only because it sets the events in the story of what troubles we would have to face next. We as a family had continuously walked through the shadows, but each and every time we came out holding tight to the light of a promise. A promise of a new and brighter day. Little did we know that this struggle was just getting started. (To be continued.)

The Real Superman Part VII

The Real Superman Part VII

As a parent with a child who has special needs it is sometimes a very difficult journey. When you find out for the first time there is a process that you go through. As psychologist like to call the 5 phases of grief. At first, there is denial. You just don’t want to believe it. I liken it to losing a loved one. You just can’t believe that your child has something wrong with them. All the hopes and dreams that you had for them seem to vanish. I know that I kept playing every scenario over in my head. He wouldn’t play any sports, I could envision him playing football, or baseball, but then suddenly the reality came crashing in. Dylan would not be able to play any of those sports. As a family, we all are very sarcastic and have very dry senses of humor, but that shared sarcastic humor would be lost on him. What was also hard for me to come to grips with was Dylan and I probably wouldn’t share in those coveted father and son talks or those father and son moments that every father looks to share in with their son; those rite of passage moments wouldn’t come for us. It saddened me to think about those things. I also thought about the fact that he would never experience his first kiss, marriage, or children, or any of those things parents look forward to from their children. I was left with a feeling of despair and actually felt alone, like no one could know the depth of my despair. What a cold hard lonely feeling.

It didn’t take long before the feeling of denial and isolation turned to bitterness and anger. This was the time that I would blame my wife, myself and my God! Those were the times when anger and frustration crept in and darkened my thoughts. I asked myself, “what in the hell did I do for Dylan to turn out this way, had pissed God off, did I commit such a dark sin that this was my retribution for it?” “Maybe this was my wife’s fault, maybe something was wrong with her?” Those thoughts were soon replaced by blaming God. “It was all his fault!” I told myself. “God has caused this!” “What father would impose this sentence on one of his own children?” I continued to ask. I was angry at God and I was going to let him know just how angry I was! I felt like Job, I wanted to question him; hell I wanted him to come down in the flesh so that I could personally confront him. I would fight him man to man. I issued that very challenge to him.

The tears of sorrow that I cried, were soon followed by tears of anger and frustration. I was bitter! I was mad as hell at the world, at myself and at God and wanted everyone to know it.

I soon started trying to bargain with God, “God if you would please help my son to be able to walk and talk and understand. I will do anything.” I also thought that maybe if we only knew sooner that something was wrong with Dylan, maybe there would have been something that we could have done, or tried? I was definitely trying to bargain with God.

Then slowly depression came creeping in and I don’t know what my wife felt, but I truly felt like the weight of the world had been cast upon my shoulders. The dark abyss of despair heavily surrounded my soul and my very heart felt as if it was going to break. I began to feel sorry for myself, “How am I going to raise this child?” I stammered. “I am not worthy of this task. It will be incredibly too hard for me. I started feeling sorry for Dylan. “He is going to have such a hard life, other people will make fun of him. What are we going to do?” All these feeling of doubts begin to invade my mind and cloud my thinking. I would lie awake at night and ponder all of these questions.

Then finally a peace came over me when I saw Dylan doing his daily struggling trying to sit up, or to crawl, or to grasp a toy, or to stand. Watching him fall continuously, but never giving up. Always getting up and trying it again. He would fall, then up again. I thought, “My God I probably would have given up by now?” He didn’t. He wouldn’t. It wasn’t in him to. I was witnessing firsthand what a true fighter; a champion was made of. In a moment of selfish reflection I saw all the struggles in life that I had went through thus far, growing up in a poor neighborhood. Raised by a single mother who had to take on menial jobs to try to supplement the welfare and food stamps we received. The struggles I had to endure in the projects of Baltimore. I didn’t have a father around to teach me or to share in those father and son moments. I had to struggle to get up out of the poverty. I couldn’t quit. Failure was not an option. I had forgotten that. Dylan taught me that lesson that day. He showed me what it was like to be a warrior! I was humbled. God had used my little man to teach me such a powerful life lesson and I felt humbled that Almighty God would chose Terri and I to be the parents of this Real Life Super Hero! I had finally accepted the fact that we were chosen for such a special task. That was the day I stopped feeling sorry for myself and for Dylan and saw things for what they really were. (To be continued)