The Real Superman Part XX

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.)

IMG_9491Snapchat-7187430480249789027Snapchat-8319462153212821135IMG_8439

The Real Superman Part XIX

The Real Superman Part XIX

By Jeffrey King

Dylan is 12 years old and as I have explained in previous blog posts he still wears diapers. We were putting out a lot of money on diapers, wipes, etc. We were actually thrilled when we discovered that Medicare would pay for his diaper supplies. It has saved us thousands of dollars over the years. Without that help there is no way we could afford to keep him in diapers. Before he began to have seizures Terri and I and his teachers at school all were trying to potty- train him. We were having some positive results, until he begin to have the seizures, which have robbed him of so much cognitive abilities. He has regressed so much that everything that he once learned or knew has long since disappeared.

I know that there are plenty of special needs parents out there who experience the same things that we have to experience on a daily basis. It never fails when we’re out and about, Dylan has to go in his diaper. We have a small Hyundai Sonata and there are many times that we have to find a parking lot to change him. I usually pull into the back of a parking lot away from any parked cars. I pop the trunk, which I leave it opened to actually block the back window. I grab Dylan’s Superman Backpack and take out a diaper, some wipes, a plastic bag and some hand sanitizer. If it has been hot out, the wipes are usually hot, so, I usually keep a bottle of water up front with me to cool down the wipes, and of course in the winter the wipes are cold and quite often frozen, therefore, as you can imagine, not a pleasant feeling. Regardless this is a necessary evil that has to be taken care of, because we don’t like to let Dylan sit in a dirty Diaper. One afternoon while we were out Dylan done his business and I pulled into a Wal-Mart parking lot. I drove to the back lot by some trailers. I popped the trunk retrieved the materials that I needed to change him. As I was changing him, suddenly a car pulled up; of course it was a police car. The officer got out and approached our car. Terri rolled down the window to greet the officer. He immediately asked her if everything was okay. She explained that I was changing my son and explained to him our situation. He was very kind and told us to have a nice day. I knew one day that this would probably happen. We have had other people ride up on us. I guess they are trying to be nosey. It is a shame that even though most malls and department stores have family restrooms where you can change your child; the changing tables are only for infants and small toddlers. Companies really don’t take into consideration families that have special needs children, or family members that they need to care for; that includes toiletry needs. It is my hope that one day this will change and companies will begin to take into consideration these people.

Two years ago we took the family to a theme park. I will not disclose the name of that park, but I will say one of its roller coasters has the name of this titled post. We had Dylan in his Wheelchair/ stroller and we were going to the rides. I have to say I was impressed how they accommodated Dylan and all special needs individuals when it comes to their amusement rides. They allow people with disabilities and handicaps to get on the rides first and let them come through the exits, so as they do not have to wait in line with the crowds. We were having such a good time and we decided to visit their water park. I took Dylan in the bathroom to change him, but was shocked to find out that they didn’t have any family restrooms with any changing tables. I had to take out a sheet that we keep folded in his diaper bag and had to lay it on the floor right by the sinks, because there wasn’t any room in the stalls to change him. Luckily there wasn’t anyone in the restroom at the time and one of the security guards came in. He kept everybody out until I had finished changing Dylan. What a great person he was and I thanked him several times.

After we finished at the water park, we decided to go to one of the shows that the put on in their outside theater. This particular show was a Wild West stunt show. We entered into the arena, which had posted on the outside on a sign “No Strollers allowed in the seating area” I didn’t think anything of it, because Dylan’s chair was actually a wheelchair. Anyway while we were headed to the handicap seating area a security worker came up to us and said, “I am sorry sir, but you cannot bring the stroller in here, it has to be left outside.” I was furious I immediately left and went to find the customer service building to complain about this policy. I got there and told them that this policy was wrong and that this chair is considered a wheelchair. The manager agreed with me and gave me a coupon book with free food coupons. He apologized and called the theater. They sent the security worker up who promptly apologized to me and took me and Dylan back to the show. They brought us up front and we watched the show and all the stunt actors came up after the show to personally greet Dylan and my two other children. They made good on a mistake and I was very pleased with their handling of this situation. I did an online survey about the incident. On the form they had a place where you could enter a comment. I entered this. “I was pleased how your organization handled this situation. I really have only one concern. I would wish that you would consider installing special needs bathrooms for people with special needs.” I added some other things, but that was the most important thing I felt needed addressing.

AS I said before I know there are plenty of families that know our experiences. There are also others that don’t have to consider what we have to actually deal with on a daily basis. It is my hope to bring awareness for parents and families that have children, or family members with special needs that have to deal with these type of issues. I know many companies have stepped up their game to accommodate us folks, and we surely appreciate it, but there is still work to do. We still have other issues that have to be addressed. You see on the daily news about people being brave and standing up for issues that they believe in.  We are hoping that people will stand up for people like Dylan and others like him. We have to be their voice, because many of them don’t have one. We have to be their advocates. Please stand up with us! Thanks! AS always, the Real Superman will continue! Until Next time!

The Real Superman Part XV

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 XII

The Real Superman Part XII

By Jeff King

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

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

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

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

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

The Real Superman Part X

The Real Superman Part X

By Jeff King

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

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

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

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

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

The Real Superman Part VIIII

The Real Superman Part VIIII

By Jeff King

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

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

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

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

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

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

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

The Real Superman Part VII

The Real Superman Part VII

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

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

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

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

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

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