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 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 XV
By Jeff King
Dylan was doing so well. He no longer was laying around like a lump. He was back! He was all over the place. We had gotten his helmet and tried several times to make him wear it, but we were unsuccessful. Every time we placed it on his head he would rip it off and toss it. We got so tired of fighting with him, we just decided not to try to force him to wear it.
We went to the mall and Dylan would run right to the elevator to watch it go up and down. We were so happy, because the light had returned to his eyes and life had returned to his body once again. This was so amazing. We went everywhere. We even decided to take his chair out of the trunk, because he didn’t have a need for it anymore. I took him to another mall where he enjoyed riding on the little carrousel that was there. He rode it several times and then I took him off of it to walk down to meet Terri and the children where they were getting their hair cut. Dylan took off. He began to run. He ran just like he used to. I was so happy to see him running once again. My man was back and he had proved once again that he was indeed Superman, and those seizures, which are his kryptonite was not going to defeat him. I gave chase, because I still was unsure about him running. I kept thinking, “God please don’t let him have a seizure”, because the floor was concrete and then suddenly he dropped to the floor head first. He lay there in a heap, flailing around uncontrollably. I ran to retrieve him off of the floor and there were several mall kiosk employees who ran to help us. One gentleman grabbed a slew of paper towels and some ice to put on Dylan’s forehead, which he had slightly busted open, but fortunately it was not bad. He did have a goose egg protruding from his forehead, but he was fine. He never cried or screamed or anything. We continued to walk to meet my family, but by now I had firmly taken his hand and made sure he walked beside me.
He begin to have several of these seizures where he would just drop to the floor, ground, etc. They were the most frightening ones, because you never knew when they were going to happen. I had recently been hired as a permanent part time teacher’s assistant at the school I worked for. I started out a one on one temporary employee. I worked with two students who had autism and behavioral issues. I was told that I did so well with them that the school wanted to hire me permanent part time and as soon as a fulltime positon became available then it was mine. School was scheduled to begin on August 26th 2013. The day before school was to begin. I was upstairs when Terri screamed for me to come downstairs. I ran downstairs. I was greeted by a scene that looked straight out of a crime scene. Blood was everywhere and Dylan was laying on the living room floor in a pool of blood convulsing violently. He had an absence seizure and had fallen and busted his head on the corner of the entertainment center. I had just recently taken a first aid and a CPR course in the summer. I grabbed Dylan up and told my daughter Destiny to grab me something that I could pack his wound with. She grabbed a bunch of paper towels and I reluctantly used them to pack his head to try to stop the bleeding. I told her to call 911 which she did. I examined the gash in his head and it was bad. It was as deep as it was wide. We waited for the paramedics to arrive and they took over. Dylan was sitting on the floor like nothing had even happened to him. He didn’t cry or give any indication that he was ever in any pain. The ambulance took him and my wife to the ER and I followed in the car while Destiny and my son Dacota cleaned up the mess.
I arrived at the hospital several minutes after the ambulance. Once inside the immediately took Dylan into a room where a nurse attended to his wound until a doctor could see him. The doctor came in and examined Dylan and determined that he would either need several stitches or staples. We actually opted for the staples because they would leave less scarring and thank God we had recently taken him to get his hair cut so it was easier for the doctor to clean him up and staple the wound closed. It was on the top of his head, which was another blessing so whenever he grew his hair back the scar would be almost unnoticeable. The doctor put 8 staples into Dylan’s head and once again he never cried or screamed out. His threshold for pain is very high. The only time he cried was whenever we were holding him down, but other than that this little guy is amazing. This is indeed the Real Superman and he was amazing. (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.)
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 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.)