Almighty – Page 8 – thetruesuperman

The Real Superman Part XXI

The Real Superman Part XXBI

By Jeff King

It has been about a month since I last wrote on the blog. I have been busy working and also with college. I have also been looking into getting CBD oil legalized here in Maryland. One of my older son’s Nicholas most recently introduced me to a young man who is an advocate for NORML in Maryland. His name is Chris Hartsell and he has asked Terri and I to go down to Annapolis Maryland to sit in on a legislation session concerning the legalization of medical marijuana, but more importantly the CBD oil that we are so desperately trying to get for Dylan. I informed him that I would definitely be interested in this, and that I would like to bring Dylan as well and perhaps share our story with the Governor, and the legislative committee concerning this matter. We definitely have a story to tell and we want these lawmakers to hear it.

Although we are not currently member of NORML and after having hearing some of the chapters leaders testify on video in Annapolis, I actually see why many of them are not taken seriously; however, I intend to change that. If I am asked to testify, I believe I bring a personal and heart-felt story to the message of why this plant should be legalized, and made available to patients that are suffering from different ailments. As I have mentioned before, I do not use marijuana, nor do I even drink alcohol. I am not condemning anyone for what they may do though.

I have personally witnessed a few people who were dying of cancer, and even one person, who was very near to me die of AIDS. These people were in constant pain and I watched as these diseases ate away at their bodies and left them former shells of themselves. The friend who died of AIDS couldn’t eat, or do anything, because he was in such miserable pain. He began to smoke marijuana for the last six months of his life. Through this plant, he was able to get back some normalcy to his life. He could cope better with the pain, he also could eat, because it helped him with the nausea that he would get from his AIDS meds. Ultimately, he still died, but at least he lived his last days with some sort of peace.

I have researched many children and adults who have suffered from epilepsy and other ailments. The medicines that are prescribed to them is nothing more than legal poisons that have vicious and debilitating side effects. For example Dylan has to take two different medications to try to control his seizures, yet even these two medicines combined together working in concert with his VNS still doesn’t keep these vampires at bay. I call them vampires, because these seizures, and the medications used to combat them have robbed Dylan of his quality of life. The side effects for Keppra in children include sleepiness, accidental injury, hostility, nervousness, and weakness and even suicidal thoughts! Wow so my 12 year old son may or may not have thoughts of injuring, or killing himself? That is frightening! The side effects of Vimpat which by the way shouldn’t even be prescribed to any patient under 17 years of age, but because Dylan has intractable epilepsy, where no medication seems to work, he was prescribed this medication. The side effects include dizziness, spinning sensation, drowsiness, blurred/double vision, nausea, vomiting, tiredness, loss of balance or coordination, difficulty walking, shakiness (tremor), headache, or memory problems. I must say, he has lost a lot of his cognitive abilities, and there are days that he cannot walk at all. We witness the tremors, so this is a great medication for people! Now I get to CBD oil, AKA, Charlotte’s Web. I have researched hundreds of cases of children and adults who suffered from uncontrollable seizures, such as Dylan has. This oil has worked miracles in all the cases I have read about. I have talked to some of the parents via email and most of them said, that they’re not even sure that their child would be alive today if it wasn’t for this oil. “CBD oil or Realm Oil) for intractable seizures in children with Dravet Syndrome. These children can suffer 40 or more seizures per day; the seizures are often prolonged in length. The oil is made a from a special strain of marijuana called “Charlotte’s Web” that has extremely low levels of tetrahydrocannabinol (THC), the psychoactive ingredient in marijuana that leads to the “high”. However, the strain has elevated levels of cannabidiol, or CBD, a non-psychoactive component that has been shown to have a number of therapeutic benefits, including those that limit seizure activity. The oil is taken in an oral liquid form, not smoked like traditional marijuana. News media has showcased several families from states that do not allow the CBD oil. These families have moved to Colorado from their home states to access the oil legally for their children who suffer from the debilitating seizures”. (http://www.drugs.com/illicit/cannabis.html). I find it hard to believe that the Governor of Maryland, who by the way I voted for, who also has cancer hasn’t considered introducing this bill into legislation. Just today, I was sent an email from my friend Chris Hartsell informing me that the Anne Arundel County Executive that I also voted for has said that he would be against any legalization of medical marijuana, or any of it derivative’s. This fool doesn’t even realize how this could help Dylan and children like him. Hell this could help thousands of ill children as well as adults. These politicians would rather get behind big pharmacy and liquor than consider really helping their contingents that he promised to help for their vote. His banner reads, “People Before Politics” What a crock of BS. Steve! I say put your money where your mouth is and do the right thing for the people of the community. By being against this you are aligning yourself with the corporate clowns, who want to continue to push their poison on the people regardless of the harm that it is doing.

Before Dylan began to take this medication, he could run and play, he could talk and sing. He was a lively and charming little boy. Now he doesn’t talk. He hardly walks. His singing is replaced by unintelligible babble. We watched as our little boy slowly and quietly faded away, and was slowly replaced by a shadow of his former self! I ask you this, “What father among you, if his son asks for a fish, will give him a serpent instead?” Matthew 7:10. My son can no longer ask me for a drink, or tell me he is hungry! The poison that he has had to ingest for the past 5 years has seen to that.

What parent would do whatever it takes to give their child a better quality of life? I know that me personally, I would tread through the flames of hell itself, if I thought I could find a cure for Dylan. There would be no mountain too high, nor a sea, or dessert to wide to cross. There’s nothing that I wouldn’t do for Dylan. This is just too important.

I am asking my friends, family, and acquaintances to please, please write, share and tell others about this important issue! I implore you! Thank you!

If you are in Maryland and can write the Governor on Dylan’s behalf, Terri and I would sure appreciate it. His email is http://governor.maryland.gov/mail/default.asp

If you’re a resident of Anne Arundel county, I am asking you to send Steve Schuh an email on Dylan’s behalf that email is Steven Schuh at exscu00@aacounty.org . We appreciate it.

These pics are before the Seizures and after the seizures

The Real Superman Part XX Follow up!

Just a follow up! I said that we have had to deal with all sorts of people that has really made our journey that much more difficult. I closed the blog talking about a little boy that came up to greet Dylan and just shared his love and acceptance of Dylan, just the way he is. That little boys’ mom should be very proud of him. She is raising him to love and not hate, to accept people with differences! Bravo to her. I also want to share an amazing and humbling event that just took place about two hours ago. This helps to restore my faith in mankind even further. As Terri, Dylan, and I were leaving Wal-Mart, I was approached by a gentleman with two young daughters. I thought he wanted my cart, which I would have gladly given to him, but that’s not what he wanted. He says to me, “Hey, I want to let you know, I understand how difficult it is raising a child with special needs. I have a daughter who is special needs herself. I want to give you this.” He said handing me something from his hand. I actually wasn’t sure what he was giving me, but, then he said, “Please have dinner on me tonight.” I thanked him as he and his two beautiful little girls walked towards the entrance of the store. I stood there in amazement for several seconds, before I looked at the bill in my hand. I was both humbled and overwhelmed. In my hand was a brand new 100.00 dollar bill. I felt the tears well up in my eyes. I continued to stand there dumbfounded for several minutes. I slowly put the bill in my pocket and got in the car. Terri noticed right away that something was wrong, so she asked me. A few hot tears began to streak down my face. I was at a loss for words. I finally said, “Give me a minute. I regained my composure and fished the 100 dollar bill from my pocket and placed it in her hand. She looked at me shocked. “Where did that come from?” she asked. I told her what had just happened and the tears began to well up inside me once again. She said that she noticed the man looking at us as we were putting Dylan into the car. We snapped a picture of his truck! This is why I continue to hold out hope. It is these type of things that restores my faith. This man was truly an Angel in every sense of the word. He didn’t know me, or my situation, but he felt compelled to help us. That is the real meaning of tithing. That is what God truly expects from us. To reach out to others to give anonymously expecting nothing back in return. There is no doubt that this man will be blessed tenfold. For the stranger that gave of himself freely, I want to say thank you and may God bless you abundantly.

The Real Superman Part XX

By Jeff King

It has been awhile since I have written. I was bogged down working at summer school and studying my last two college classes of the last semester. I just recently finished both. There has been a few things that have taken place since I last wrote The Real Superman. Dylan was scheduled to have the battery in his VNS changed today, which is 8/5/2015. It never happened, because, the surgeon’s secretary would call every few days to move the surgery further. It was originally scheduled for 7:00 AM, but she called us yesterday after calling us two previous time to reschedule and make it later. Now they wanted to schedule it for 2:00 PM, which is actually insane, because, Dylan wouldn’t have been able to eat anything after 12:00 AM this morning. That means he would have to go about 18 hours before he would be able to eat anything. I guess when you’re second class people these surgeons can reschedule you anytime they feel like it. Dylan being possibly two years old mentally, would be very angry if he was unable to eat for that long, and besides, it isn’t good for his health to go for that long. I am considering on launching a complaint against this surgeon, because, it is ridiculous to expect a child that is like Dylan to go that long without anything to eat.

I truly have a problem with the way people treat children with special needs. Don’t get me wrong, it isn’t everyone that does it, but when you’re a parent of a child that has special needs, you notice all the stares and whispers. You notice how some people treat you differently. Just as I was explaining. If we were people that had top of the line health insurance and not Medicaid for Dylan, but perhaps, Blue Cross and Blue Shield; or if we were paying cash, I can bet money that this doctor wouldn’t have continued to put Dylan’s surgery off! It just peeves me! Goddamnit, we are not second class citizens. We matter too! These children matter! We ended up canceling it and rescheduling it for next Thursday. The Secretary told us that if we didn’t reschedule it for next week then we would have to wait until October before we could reschedule it, because the surgeon was going on vacation. Must be real nice? Anyhow, I guess we should be use to this sort of thing by now, since these are the things we have had to deal with since Dylan has been little.

I have written before about how people would say things, for example the woman at the mall who accused Dylan of pushing her kid off the Humpty Dumpty Sliding board. Then there was the woman who blocked the wheelchair access aisle so we couldn’t get Dylan out of the store in his wheelchair. The woman that said that I wasn’t even man enough to make a normal child. Then we went to the MVA to aquire a special parking permit in front of my house, so we can have parking right out in front. We have fought people over this issue. On occasion we have some assclown that decides to park there, but unbeknown to them it is a 500.00 fine to park there. I have actually had words with several neighbors because they parked there. I had one neighbor across from me had someone visiting from Florida parked there. We pull up it is pouring down raining and someone is parked in our spot. I didn’t know who it was. I layed on my horn, hoping someone would come out to investigate and perhaps know who the vehicle belonged to, but to no avail, so I called the police and the officer comes to write a ticket for the vehicle. The lady across the street from me pulls up and ask me what was the problem, I told her that someone parked in my spot. She then says to me, “Do you want me to go get him and make him move?” I replied that I had already called the police. The officer hadn’t arrived as of yet, but she then replies, “Well that is unneccesary!” I did’t know she knew this person, but she began to cuss me out like it was my fault that this ass hat parked in my spot! My daughter began to yell at her, and began to threaten her. That is when the clown that had parked in my spot finally came out of her house and walked across the street. He asked me what was the problem and I explained that I have a permit for the parking space and that it is a 500.00 fine to park there. He said he didn’t even see the two great big signs that read “PERMIT PARKING ONLY”, which also has a number that is affixed to my driver’s side windshield. I replied, “Can you read?” Which he took offense with me. That is when the police officer pulled up. I explained to the officer what transpired. I told the officer if he moves I am not worried about if he gives him a ticket. I just want my parking space so I could get Dylan out of the car and into the house. This is the kind of issues we have had to deal with. One time some Jack hole had parked there and I called the police. The officer that came actually asked me what I expected him to do about it. I informed him that they usually write a ticket for the violators. He told me that he wasn’t comfortable doing that and to park somewhere else. I promptly took his name and badge number and told him that I was calling for another officer. He was a real smart ass. He said, “Go right ahead, they will just send me back and I am not writing a ticket, I don’t have to.” Which really pissed me off. The woman who parked there came walking down the street and the officer asked if the car was hers and she said yes. He said, well you can’t park here. She said “Oh I am sorry, I didn’t know that?” She got in and drove off. Then the officer says to me, “all taken care of” Like he did something. I quickly replied, “Yes, but no thanks to you.” I will be in touch with your supervisor.” I called his supervisor the next day and was assured that I wouldn’t have another issue with an officer writing a ticket, because that is his job.

These are the things we have to deal with. I also explained the stares people give to Dylan. Like he is some kind of freak. He yells out, because he cannot speak. We expect children to stare, but then we have grown ass people rudely stare. We hear them whisper and occasionally laugh. One time, me, Dylan, Terri and my mom was in Wal-Mart and I was walking ahead of them. Terri was pushing Dylan in his chair and Dylan began to scream, it is an impulsive sensory thing that he does. Most people pay no mind to him, because most people no better, but as they’re walking along, Dylan is screaming. I was up ahead, because I was checking on something. Dylan let out an ear piercing squeal there was a lady directly in front of me she looked up and said, “Geese, shut that kid up!” I said, “Excuse me?” and she laughed, “I said, shut that kid up!” I was angry and I yelled at the woman, “What in the hell is wrong with you lady? That’s my child you’re talking about and he is Autistic!” She turned horribly red, “Oh I am so sorry, I didn’t know? I work with kids like him.” She replied. “I sure hope the hell not!” I said furiously “Because I sure feel sorry for them! You intensive asshole!” I added. By then Terri had overheard what was going on and she immediately reamed the woman out as well. Suddenly my 65 year old mother came careening down the aisle with a cart, “What did that bitch say about my grandson!” she yelled. I immediately calmed her down we got what we came to get and quickly left the store without further incident.

These are the things that saddens me. I often wonder is how Dylan will be treated when we’re no longer around and sometimes I feel hopeless; however, there remains a glimmer of hope. We were out at a mall yesterday and me and Dylan sat on a bench waiting for Terri to finish in Torrid. This little boy escaped from his mother and came running over to wear we were sitting. I was on the bench, but Dylan was in his wheelchair. The little boy bean to rub Dylan’s hand and say hi. His mom came over and said, “Did you tell the little boy hi?” they both smiled at us the young woman said hi to me and asked me how I was doing? I told her good thanks. She smiled and walked away. It is these type of things that gives me hope. We have people hating one another because of race issues. We have people hating people because of religion and politics. It seems as if the world is seriously going to hell and we are all on a one way dead end road towards doomsday, but there is yet hope. The little boy that came up to Dylan was probably about three-years old and an African American. He didn’t notice Dylan’s skin color, or his disability, he noticed that Dylan was a kid, just like him. That is truly love and that’s the kind of love that produces hope. (To be continued.)

The Real Superman Part XVIII

By Jeff King

Charlotte is a little girl that suffered the same intractable seizures that Dylan has, but quite possibly worse than what Dylan has. She was having up to 300 seizures in a week, and she was incapable of doing anything, but having seizures. Her parent’s the Figis tried everything possible to give their little girl a chance at a normal life. They even tried the ketogenic diet, which actually was spear-headed by Dylan’s neurologist, Dr. James Rubenstein. We actually considered this diet for Dylan, but Dr. Rubenstein didn’t think Dylan could benefit from it, since Dylan loves to eat. That is one thing that he loves to do. His favorite food has got to be egg salad, but he loves any bread, therefore, the diet would be very hard and expensive to implement, and we just don’t have the finances to incorporate it into Dylan’s diet. That being said, the Figis tried this diet, but it didn’t work for poor Charlotte, then they discovered a something that seemed to prove very promising to them. Charlotte’s parents found out that there was a boy being treated for Dravet syndrome (Intractable epilepsy) with a form of Cannabis oil that was low in tetrahydrocannabinol, but high in cannabidiol. This was actually working for this child and it had reduced his seizures by half. Charlotte’s parents found a dispensary in Denver and paid for a high strain of Marijuana and employed a friend to extract the oil for them. They tried it on Charlotte and immediately they began to see results. Charlotte went several hours without any seizures and then several days went by; still no seizures. They had discovered a medical miracle. Charlotte’s life was forever changed. She is able to walk, talk, and do all the things a normal child is able to do. To read more about Charlotte’s amazing story please go to this link http://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/. Upon reading little Charlotte’s story I was so overwhelmed with joy. For the first time, I felt like there is certainly hope for Dylan. I shared the story with Terri.

We both did more research and found hundreds of cases like Charlotte where this CBD oil was working wonders on people with intractable seizures. Where other medications wouldn’t work, this stuff was working, and without all the negative side effects that these man-made poisons were causing in our children. There is only one problem, medical marijuana isn’t legal in the state of Maryland, at least not at the time that we were researching it. They have since legalized medical marijuana in our state, but, the oil is still not legal.

We even considered selling our house and moving to a state where it was legal, however, I am a permanent substitute teacher and I only make 22, 200 dollars a year. Terri doesn’t work, because someone has to be home at all times in case Dylan gets sick and needs to stay home. We do get about 650.00 a month in social security for Dylan, but that is based on my income. The more I make, the less that they give him. It is a vicious cycle and they have put us through the wringer at least once a year since we have started getting it for him. The actually act like the money is coming out of their pockets. The social security administration is the worst government entity that I have ever had to deal with. I will explain that in a later post though.

Anyway, we decided that it just wasn’t feasible to sell our house, which our mortgage is only 650.00 per month, because it is a town house that I bought as an estate sale. We bought what we knew we could afford at the time. We only had two children then and this is the only house that Dylan has ever known, unlike our other two children, but anyhow, my two other children were in high school, so we really didn’t want to pull up roots and move them somewhere else; let alone another state.

My daughter Destiny graduated with honors this year and wants to be an early education teacher, which she decided since she has had to learn to help take care of Dylan at an early age, so she feels drawn into the education field. We are very proud of her. Our son Dacota will be a senior when school starts again in August. He is thinking about taking up graphic art and design. He is actually good at this already. We are also very proud of him. These two children have grown up knowing what it is like to love and care for a person that has special needs. It has helped them to develop real compassion and ultimate character traits. We sure didn’t want to move, because it just wouldn’t have been fair to them. So for now, we have been writing letters to state and local legislators trying to convince them to champion our cause to get this Charlotte’s Web oil legalized here in Maryland. I am even thinking about including a poll on the blog and asking people to vote, so we can present it to our congressman.

I recently became concerned with another issue that we were facing with Dylan. He is a growing boy and he is very solid. The last time he was weighed he already weighed 95 pounds. This may not seem like a big deal, but our room is upstairs, and yes, he still sleeps with us, because as I said in an earlier post, that we became concerned that he may stop breathing in his sleep, so Terri and I decided that it would be best for him to sleep with us, so that we can monitor him through the night. Parents shouldn’t have to worry about these sort of thing, but, it is what it is. I have been obese for the past two years and hadn’t been really strong enough to continue to lift Dylan up to take him up to bed when he fell asleep downstairs, so in February of this year, I began a diet and exercise program in which I have lost over 30 pounds. I have gained more muscle. I have recently contacted some companies to see if they wanted to exchange products for a review on my blog, so I will be adding those reviews whenever I receive these companies’ products. I figured I needed to get stronger and healthier so that I can do everything in my power to be around for Dylan as long as I can possibly be. As I stated in a previous post. I made a promise to him, that as long as I had a breath in my body and a beat in my heart, I would never place Dylan in a healthcare facility. I will continue to keep everyone updated about the Charlotte’s Web oil and these companies’ products. I am also interested in other things which could be helpful for Dylan and would appreciate any ideas, or feedback that anyone may have! Thank You! Please continue this journey with us and as always we appreciate your comments and feedback. (The Real Superman will as always be continued.)

The Real Superman Part XVII

By Jeff King

Whenever Dylan gets sick, he usually has increase seizure activity. That is one way we know that something is wrong with him. Since he can no longer speak we’re unable to know how he is feeling. He cannot tell us if his tummy aches or his head is hurting, or he has an earache. We’re always worried if something major happens, how we are going to know what’s wrong with him. For example, my appendix burst and I had to be rushed to the hospital and have an emergency Appendectomy. I knew something was wrong because my right side was in excruciating pain, and I was running a fever, but sometimes when Dylan is sick, we don’t even know it, because he never cries. He had quite a few ear infections where he ran a slight fever, but he didn’t really show any indication that he was in pain. He started having an increase in seizures, so we decided to take him to the doctors. When his pediatrician examined him, he discovered that he had an ear infection and prescribed antibiotics to clear it up. This has happened around twenty or more times when he was a little younger. We tried to have tubes put in his ears, but the hospital that we took him to refused to do it until he was seizure free for a month. This is impossible, he hasn’t been seizure free longer than a few weeks, and that was right after he started taking Vimpat, which was probably do to a combination of the Vimpat, Keppra, and the VNS. We thought that the Vimpat was going to be the magical cure for Dylan’s seizures, but, as usual once his body was used to the medicine, the seizures returned. Anyway, Dylan slept for about 12 hours one day. We knew something was wrong and we checked him out. He had a fever and we decided to take him to a local clinic to get him checked out.

We arrived at the clinic and checked him in. We waited about half an hour until he was called back to be examined by the on call physician that day. She checked him over and afterwards informed us that Dylan had an ear infection. She prescribed Bactrim which is a sulfur type antibiotic. We took him home and began to give it to him. The next morning Dylan was on fire his temperature was 103 and he had hives all over his face and body. We took him back to the clinic to see what was going on with him. The physician on call was a different one than the previous day. He looked at Dylan and said that they were going to call an ambulance and have Dylan transferred to the emergency room to the hospital where my wife had her surgery, where the doctor butchered her. I yelled at the physician, “Hell no, I am not taking my son to the butcher shop! I wouldn’t take my enemy there, or even a dog!” He looked surprised and asked if I was refusing to have him transferred there? I told him, “Hell yeah, I am!” and grabbed Dylan off the examining table hoisted him over my shoulder and carried him out to the car. I buckled him into his seatbelt and he, Terri, and I drove up to John Hopkins Emergency children’s center. They quickly took him into an examining room and immediately a doctor came in to examine him. She took one look at Dylan and said, “He looks like he has Stephen Johnson Syndrome and he would need to be admitted right away. A nurse came in and started an IV drip which had an antibiotic in it.

Dylan was hospitalized for a week and we were told he did indeed have Stephen Johnson Syndrome which was caused by the Bactrim. The time Dylan was in the hospital he lost some weight, because he had lost his appetite. This all took place right before Christmas, and Terri had to stay with him for the week while I worked and had to be home to take care of my other two children. I contacted the clinic and told them that they nearly killed my son and that I was going to put in a complaint against them. We had told them that Dylan had some allergies to certain medicine’s and the doctor at John Hopkins told us since Dylan was allergic to Trileptal then the doctor at the clinic should have known that Dylan would have been allergic to the Bactrim, because it had a similar chemical compound.

Dylan always seems to get some kind of sickness around the Christmas holiday. I mean I know he doesn’t intentionally make himself sick, it just seems like that is the times he is most likely to get sick. The worst thing for us is the fact that he can’t come up to us and say, “Mom, Dad, I am not feeling well.” The fact is most of the time when he does get sick, we don’t know he is. This little boy can be sick, or even have a fever and the majority of the time, he will still be running around between the living room and the dining room playing with his toys. We have to have great discernment skills to find out when he’s sick. As I said before, one way we know something is wrong with him, is he often has more seizures, but what we would give to have Dylan become seizure free. There is some hope we feel available and it is called Charlotte’s Web. (To be continued.)

The Real Superman Part XVI

By Jeff King

For a while Dylan did improve. He wasn’t having a lot of seizures and whenever he had them they were quick and he recovered pretty quickly, as if nothing even happened. We were able to successfully get him to where his helmet, but it was a hell of a fight to get him to do it. Every time we would put it on him, he would rip it off and throw it across the room. Most of the time he would smile about it. He knew what he was doing. In the end our perseverance won out and Dylan still wears a helmet today, but, man the struggle was real!

One early September day in 2014; right before school; Terri had just given Dylan a bath when a very freak accident occurred. Terri had a whole collection of brass and ceramic unicorns that she had collected since she was a child. Terri had just finished bathing him and put his helmet on. She was preparing to get him dressed. He had been running around the room like a Wildman, which by the way was normal for him when all of a sudden it happened. Dylan had an absence seizure and fell backwards hitting the shelf that housed all of Terri’s fine collectable unicorns. She called for me I was downstairs getting ready for work and I hear her scream my name, so I go flying up the stairs like a bat out of hell. There was blood everywhere. We lifted Dylan up off the floor and sure enough he was bleeding, but we weren’t sure from where. I quickly removed his helmet to examine him. That’s when we noticed that he had a small puncture wound in the back of his head, “But how?” we asked ourselves. He had his helmet on. Terri looked over at the shelf to examine the damage when she noticed a particular ceramic unicorn which was intact all except for the fact it was missing its horn. I picked up Dylan’s helmet off of the floor to reexamine it. It was then that I found the unicorns horn, it was wedged in a small hole that was created when Dylan fell on it. We cleaned him up and the mess and he stayed home from school that day.

Dylan has always found a way of destroying things; sometimes they were accident, while other times he would purposely destroy things. Here is a list of things that he has destroyed: Our semi new flat screen HD TV that we only had for a year. We had just finished paying the credit card off that we used to purchase it with. Dylan had an absence seizure and fell head first into it. We had to borrow a small TV from my sister-in-law until we were able to buy a new one. He has broken 4 sets of lamps, by just pushing them off the end tables. It takes him several times of knocking them off, but eventually he is successful. We always try to correct him, but he just doesn’t seem to understand. He has torn up several sets of living room and dining room furniture as well. He just ripped the fabric off one of our sets of living room furniture. We bought nice leather furniture and he was good with it. He never once tried to tear that set up, but over the years from wear and tear it eventually wore out, so we waited until tax time 2014 and bought this furniture with cash. It cost us about 1300 dollars. It wasn’t made very well and for some reason Dylan decided that he wanted to tear it up. It was fake leather and Dylan had it destroyed in less than 4 months. We just bought another leather set on credit and he seems just fine with it. We purchased a dining room set a few years ago. The table was very nicely made and we still have it today, but we have went through three sets of chairs. Dylan would go out in the dining room and knock the chairs over. He reminds me of the Tasmanian Devil from the Warner Brothers cartoons. He has destroyed pictures, which some he has stood on the furniture and ripped them off the walls. He ripped Terri’s dream catchers up. We caught him several times with the feathers still in his mouth. Like a cat that just ate the canary found with the evidence still in his mouth. It sounds funny, but at the time that he is doing these things, we don’t find it very funny. We have tried to stop him several times, but he is like a tornado going through a room, or a bull in a china shop. No matter how many times we stop him and sit him down and tell him no, he will wait until an opportunity arises and he will go tear things up.

He has torn up our plants several times. Just recently he was playing in his toy box and I was watching TV when he came out into the living room and his face and hands were covered in dirt. He had been into Terri’s plants. I had to clean him up as well as the mess he left for me. He came in and looked at me to show me how proud he was of himself. He has ripped up my other children’s homework, my college papers. My niece gave him the name the Ripper, because when we were visiting them one day he had gotten into her room and ripped up one of her books. She came running into the living room crying “Dylan is tearing my book up! He is the ripper!”

Whenever we have told people about this they usually tell us things like, “Buy a gate to keep him out of places.” We actually have done that we have several gates put in place; one at the bottom of the stairs so Dylan cannot go up the stairs for fear that he will have a seizure and fall down them and the other blocks him from the kitchen, so he can’t get into the kitchen to pull the stove over on himself; which he has actually done several times before we got the gate. The gate guarding the kitchen has been compromised several times. Dylan has fell on it shattering it twice, both times Terri has had to glue it back together, because the gate was specially ordered on line and we can’t find any like it at any of the stores. (To be continued.)

The Real Superman Part XIV

By Jeff King

About four months went by and Dylan was doing so well with the VNS. He had become very vocal, but still didn’t talk. We had to go up to his neurologist every two weeks to have his VNS adjusted. Right after his 4th adjustment Dylan began to have some real bad acid reflux. This became a big concern when the majority of the time he was spitting up bile. It began to take a toll on his teeth and the acid from his stomach began to eat away at the enamel. We voiced our concern to both his neurologist and his pediatrician. We also became quite concerned that this reflux would damage his esophagus.

We made an appointment with his neurologist and talked to him about our concerns. He set us up an appointment with a gastroenterologist from John Hopkins. She did several test on him and prescribed a medication that we would end up using for about 9 months. It was erythromycin. This was a small dosage that they used and in theory it was supposed to help empty the intestines and protect the esophagus from any damage that could be caused by the acid reflux. This really didn’t seem to work that well with Dylan and we had to now by bibs for him to wear, because his clothes were getting ruined because he would reflux all day. The teachers at his school brought in oversized buttoned up shirts that they would put on him to keep him from staining his clothing. This was a terrible time in Dylan’s life, because he couldn’t really eat much and we started giving him ensures and baby food to try to get him to eat without spitting everything up. Terri and I were sure that this was a side effect of the VNS, but Dr. Rubenstein continued to disagree with us, even after we had found some literature stating that fact. Dylan’s teeth had gotten so bad and although Terri would brush them daily, it didn’t really matter. They were all rotting out, because the acid from his stomach had just eaten through them.

We made an appointment at the University Of Maryland Dental Department. They would have to put Dylan asleep so that they could pull out his rotten teeth, which at least were still all of his baby teeth and they would try to treat him with some things that would prevent further damage to them, but they informed us that it wasn’t guaranteed and that we would definitely have to try to brush his teeth at least twice a day, but they recommended three times a day for him. This was almost physically impossible to do, because Dylan absolutely hated having his teeth brushed, or his mouth messed with at all. Dylan was very strong and he would fight hard to stop you from carrying out any plans to brush his teeth. It sometimes took the two of us just to hold him down to brush his teeth one a day and now they really wanted us to try to brush them three times a day.

The anesthesiologist put Dylan out and a team of Dental surgeons began to work on Dylan’s mouth. It took them about an hour and a half before they were done. They took him into recovery and sent for us. We went into his room and tried to wake him up. He wouldn’t budge. We waited about a half an hour and began to try to wake him again, but for the second time we were unsuccessful. He was out cold. We tried this several times for the next hour and a half. The nurse was in several times and tried to wake him too, but she too was unsuccessful. She checked his vitals and everything was fine, he just wasn’t ready to wake up yet. Terri and I did become concerned that maybe the anesthesiologist gave him too much anesthesia? We thought.

After several more unsuccessful attempts the nurse contacted the anesthesiologist who then decided that it was in Dylan’s best interest to stay at least overnight for observation. Terri stayed with him while I went home to attend my other children.

The next day he was released and was just fine. This was the first time that he had a hard time coming out of the anesthesia even though he had been put to sleep several times in the past.

Dylan continued to have the reflux and now the gastroenterologist advised us to consider letting her put in a feeding tube. She said that this would most likely stop the reflux. We left her office upset, because we didn’t want to put Dylan through anymore surgical procedures. We decided that we would have this procedure done, because Dylan had lost so much weight, he began to look like a skeleton with skin. He looked very sickly. Thank God our insurance dragged their asses to approve this procedure. We took Dylan to Dr. Rubinstein who wanted to make another adjustment to the VNS, but we told him NO! He was still having seizures, but we knew that the VNS was definitely the cause of his reflux, because he didn’t have it before the VNS. We finally got approved for the feeding tube and were making preparations to have the gastroenterologist do the surgery, but she happened to be on vacation, so it would be at least another 2 months before we could schedule the surgery. Within that two months something miraculous happened; the reflux, which had come on so suddenly after all the adjustments with the VNS seem to vanish after we stopped his neurologist from adjusting the damned thing. We decided to postpone the feeding tube indefinitely!

For the next several months Dylan continued to gain weight. He started looking healthy again. He no longer looked sickly. He was having seizures, but not like he had before the VNS. He was having more absence seizures where he would just fall out and hit his head and face. We decided to contact Dr. Rubinstein about ordering a helmet for Dylan. (To be continued.)

The Real Superman Part XIII

By Jeff King

December 22nd, 2011 was finally here. We took Dylan to his surgery appointment early that morning at Johns Hopkins Children’s Center. We had to be there by 6:00 AM to get him prepared for the VNS. My wife and I was quite nervous about this procedure. We had researched it and we knew that he was at the top hospital in the world. With the top neurological surgeon for children, George Jallo. Who is also the Clinical Director of Pediatric Neurosurgery and a Professor of Neurosurgery. This guy is the best in this field and he has the credentials to prove it. We were still very worried. We prayed and waited with Dylan until the anesthesiologist showed up. He had his own team that he brought with him. They assured us that Dylan was in good hands. Of course we were concerned after what Terri had went through, but this was the hospital that I had taken her to. This was where the surgeon who had put her back together once practiced at. He had moved on to another hospital, but he had designed the surgery that saved my wife’s life Dr. Charles Yeo was a miracle worker and we were sure that Dr. Jallo was cut from the same cloth. He worked at the same hospital. The hospital that people from all over the world come to when they want to get well! Dylan was in good hands indeed.

The surgery took about three hours and the Doctors assistant kept us informed throughout the surgery. This is definitely a first class hospital and they deserve every award they receive.

After about three hours the Doctor came out and told us himself that everything went well and that they were getting ready to transfer Dylan into recovery. It took about a half an hour before a nurse came out and got us and took us to Dylan. He was out like a light and we examined is tiny body. He had a scar that ran up the left side of his chest to just under his chin. It looked like someone had cut his throat. It was a little disturbing looking to us. Dylan was out for about an hour before he finally woke from his drug induced slumber. We thought he would wake up crying or screaming, but, no, he didn’t. Like some sort of Friday the 13th movie Dylan sat up like Jason Voorhees. He was ready to get up and go. We gave him some juice and he drank it down like it was nothing.

Almost immediately we noticed a difference in Dylan. The first few weeks we almost had the old Dylan back. He was more alert and for the first time in over a year he was seizure free! Our thoughts were, “finally, we have found the magic bullet. This would surely be the golden cure that we were looking for. We took him to Dr. Rubenstein over the next several weeks so that he could adjust the stimulator. He was amazed how well the surgery went and how well Dylan was doing. He witnessed Dylan trying to communicate again. He wasn’t talking yet, but he was definitely more vocal and we truly believed that soon, he would talk once again. Finally our son had returned. How I missed that boy.

Dylan was more animated than he had been in over a year. He was walking around and moving at will. He began to play with some of the toys that had been lying dormant for the past year. We were definitely witnessing our second miracle; the first one being the day he started running. What we didn’t know that this too was only a temporary fix and that the seizures would be back with a fiery vengeance in about 4 months. (To be continued.)

A Journey of Next

When you’re on the journey of God’s next. The road is not always easy. You see God will take you through the wilderness where you’ll encounter all types of hardships. We quite often want to stay in the bondage of the old, because it is hard, but at least we know what we have. Many stay where they’re content, because it’s just easier that way. Most people are afraid to start a new journey, because they are afraid of the unknown, they’re afraid of the struggle before them. Many who do partake on a new journey is often met with what they believe to be unsurmountable odds. They cry out for food and water and safety, because at least where they were offered that to them. Where they’re headed is an unseen land and often the road is narrow and dark. We quite often travel through barren wastelands where there seems to be no promise of a new and brighter day. Quite often we climb hazardous mountains on our journey to the next; forging our way through the roughest terrain that we could ever imagine. We want it easy, but no greatness comes so cheaply. Greatness cost us everything. We want to learn our lessons without sacrifice without hardship, without going through the darkness. We want to sit atop of the apex and look out over the valley to see what awaits us on God’s journey of next. God knows that we can never learn what He is trying to teach us if we stay atop the mountain. He knows that the valleys and the deepest shadows are where we learn the most. We learn to trust, to wait, to hope to endure, through our deepest and darkest moments in our lives. A wise man knows that the journey through life is just that a journey. We were never meant to become content with where we are at, but look forward with hope to the next part of our journey. When life for me here has ended, I do not believe that my journey will end at death, but it will be the next leg of this journey that we are all on. We cannot see that side of eternity, but we look on with expectant hope that our journey to God’s next awaits us there. Sometimes the journey is thrust upon us. We are taken out of our comfort zone and are forced to begin a new journey; not a journey we would have chosen for ourselves. 12 years ago Terri and I were forced upon a journey that I am sure that we would have never chosen for ourselves. We were young and inexperienced when Dylan was born. We were parents, but could have never imagined the journey that awaited us with Dylan. He has been our guide through this journey. We have learned so much along the way. I decided to go into special education, because of Dylan. I am no longer content with just teaching children with special needs. I now want to be able to do more for my son, other children and adults that have special needs. I want to be their voice, their advocate. I want to be a defender of the defenseless! I want to be able to fight for their rights. See the thing is when you’re on a journey, you get hungry. You need sustenance. You look forward to crawling and scraping through the wilderness, you know that shadows and darkness awaits you, but you also know that shadows cannot exist without light. That light is what keeps you going. You know when you reach the top of that mountain you have a meeting with the Almighty and he is giving you another set of marching orders to carry out! Then it’ll be onto the next journey! A wise man once said that a journey of a thousand miles begins with a single step. I say enjoy the journey.

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.