He finally got his go talk 4 the other day. Now we can work on getting him to Express himself. He didn’t want his picture taken as you can tell. At least he is smiling in the one picture. I am so happy he is finally feeling better as well.
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
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.
By Jeff King
The Real Superman Part VI
Dylan was a pretty amazing little boy. He was learning so much and could do so much, but we were learning from him as well. We learned patience, which is something I Sorely lacked. I finally understood what the meaning of unconditional love. How Dylan was and is the very meaning of that term. We were watching the brain slowly developing right before our very eyes through this slow process that was going on in Dylan. I was already a compassionate person for people with disabilities. I believed myself to be the defender of the defenseless and I can still remember until this day when I was fourteen years old and me and two of my friends were walking up the street. About fifty yards ahead of us was a man probably in his early twenties. He was intellectually challenged, or what they called at the time mentally retarded. Such an ugly hateful word. This young man was walking along going about his business, not harming anyone when three older teenage boys begin to tease him. I heard them calling him hurtful names, like Retard, Freak, Mistake from God, Gimp, Idiot, and such ugly evil words. They were yelling this at this man. I was behind them while it was going on. The more they teased and laughed at him, the angrier I became. I started screaming, “Leave him the hell alone!” They just laughed and continued to harass this poor man, but what one of them did next, was the final thing I could handle. They had hemmed the poor man up against a sticker bush and one of the punks pushed him into them. I became enraged! I felt my adrenaline pumping inside me, I heard my heart beating in my ears and in a blind rage I ran up to the older teenagers and begin to push them into the sticker bushes! I started punching them and kicking them. There were three of them and they were bigger and older than me, but I didn’t care. My only concern was for the gentleman that they had been bullying and teasing. I let go of every ounce of my anger and let all three of them have it. By the time my two friends had caught up to us I had successfully beaten every one of those assholes up. We all helped the young man up who was now crying and visibly shaken! I asked him his name and he told me that everyone called him Happy Jack. Later on I found out that Jack was indeed his first name. As I got into my house later that evening, I started to cry myself. How could anyone be so cruel to such a sweet innocent being. The world we were living in was very sick and twisted.
I added this story because, when I look at Dylan, I can see the hate that people will have towards him. I can imagine the pain that he will have to endure at the hands of evil people like these teens were. After Dylan was born and it was determined that he was indeed intellectually challenged, that incident came back to me fresh as it had just happened. My question was would Dylan have a defender if he was ever in that situation? Who would be his voice? Who would be his fist if need be? I long realized that this world is full of cruel people that would harm him. It saddens me.
I made a vow that for as long as I live and as for long that there is a beat in my heart and a breath in my lungs that I would always be Dylan’s defender. I would not be alone, because my wife feels the same way and his two siblings have also stated the same thing.
This has also been a journey for my other two children as well. Growing up with a special needs brother hasn’t been easy on them. Throughout the years they have cut ties with friends who made fun of Dylan, my daughter also is like me when it comes to people with special needs; she is a defender of the defenseless. She has stood against hatred and teasing of other children by other children that she went to school with. It hasn’t been easy on them, but, they have learned to be champions for others and I am proud of them!
This journey that was chosen for us has been an incredible one. It wasn’t a road that we chose for ourselves, but if we had the chance to do it all over, I believe in my heart that Terri and I would choose to have Dylan again. I am a firm believer that God doesn’t make mistakes and although the universe has dealt us this hand, I believe when it is all said and done, we will come out holding Aces! (To Be Continued)
By Jeff King
The Real Superman Part II
We went home and together sat at our computer, we googled triplication of chromosome 15 at that time there wasn’t anything written about it, however, a few things did come up in our search one was duplication of chromosome 15, or Isodicentric chromosome 15 syndrome. We began to read about it. For more information you can read about Idic 15 at the following websites http://www.dup15q.org/understanding-dup15q/what-is-dup15q-syndrome/
By reading this material we had a little better understanding of what Dylan was going to be like, but these were duplications of the chromosome and not a triplication. We read that 1 in 30,000 newborns are born with this. We read about the developmental delay that the children have, behavioral difficulties, mental retardation, autism, seizures and just so much more. It was truly overwhelming. We stumbled on an organization that was called Unique The Rare Chromosome Disorder Support Group. They were based in the United Kingdom. We wrote to them about what the geneticist told us about Dylan.
Several days later we received an email back from them and they informed us that they believed that Dylan had Idic 15. They signed us up with their organization and sent us a welcoming package that had names of other families who had children with rare chromosome abnormalities. There were families in the United Kingdom, and even many in the United States that had children who had Idic 15. We didn’t feel quite so alone anymore. We would identify Dylan’s disorder with Idic 15, however, he didn’t have a duplication, but a triplication of the 15th chromosome, so we still didn’t really know what to expect?
We contacted the Maryland Infant and Toddlers Program and was entered into Child Find. The sent out a team of assessors to see if Dylan qualified for this program. We shared with them all of Dylan’s health records. After the initial assessment it was determined that he qualified for help and right away they set up home visits from physical, and occupational therapist. These visits would go on once a week and they were not fun for Dylan and made us have to go outside on several occasions. The therapist would come in and ask us a slew of questions before they began to work on Dylan. This was done by twisting and pulling and contorting his little body in every way imaginable. He would scream and cry; it was heartbreaking for us as parents. They brought in a giant exercise ball and would place Dylan on it and roll him around on it. By doing this it helped to loosen up his tight muscles.
Dylan’s therapy went on for several excruciating months. He didn’t like whenever the therapists would show up, because he knew that they would make him work his body. We didn’t like to hear him crying in pain, but it was a necessary evil. I probably was the father from hell towards the therapist, because I would yell at them. They would always make me leave the room. I did start to notice that Dylan began to be able to do things that he was unable to do when before the two therapists showed up. He could now crawl, grasp items and then, he was able to sit up.
Dylan seen these two ladies twice a week for a year and the results were amazing. In the meantime, I had begun blaming everyone for the way Dylan was born. I never told her at the time, but I was sure it was my wife’s fault, perhaps it was the doctor’s fault, or even God? I then started blaming myself and beating myself up over it. It is hard to explain the darkness that some people go through when something like this happens. The tears that I cried and the anger and bitterness that was eating me drove me further away from my wife and my other two children.
I continued to angrily question God, “Why in the hell would you allow this to happen to this child? What kind of cruel God are you?” I’d scream through bitter tears. It was in one of those tear-filled rages that I looked at Dylan. He had now been able to pick himself up off the floor and navigate himself around the room using the furniture for balance. Then the words I heard echo inside of my ears and stabbed me right in my heart! “Stop feeling sorry for yourself! Look at your son, he is awesome! He is a champion. No matter how hard it has been on him he hasn’t given up. He has fallen down thousands of times, yet he still gets back up!” That day my 16 month old son taught me the most valuable lesson I have ever learned in my entire life and if I could share this with anyone this is very important. Never, ever give up! If you falter, or fail a thousand times, a million times; keep fighting the good fight! It was at that very moment in time my whole life changed! Dylan hadn’t given up on us and I would be damned if I would give up on him! (To be continued)