My Hero

     I look in many places to find inspiration for my writing, including my own life. One day, thanks to a friend’s email “forward”, it dawned on me that I should write one of the most heroic stories I know.  I know it well because I played a part in it as well. It is the story of my son.
     Now maybe you will not find him very heroic in the common sense of the word, but I ask you to think about everything he faced. Think about what the odds said would likely become of him and then maybe you can see the hero I have long known him to be. Even he doesn’t see himself as a hero, but then don’t most true heroes feel that way?
     Labor with my son came about in a strange way, although via nature, in a sense. I was stung by a scorpion and that induced my labor. The delivery was hard and over long and ended in an emergency C-section; his heart rate had dropped dangerously low. Once born, though, he was seemingly healthy. We named him Steven James for my father and my brother (who was named for an uncle we never had the pleasure of meeting)
     Then, at 5 – ½ months, he developed a severe case of otitis media (inner ear infection). Before he could even get the medicine in his system, he was in grand mal convulsions. For those that have never seen them, they are very scary involving the body going rigid and shaking from head to toe with the eyes rolling in the back of the head. When it happens to your own child it is even scarier; when that child is so young it is terrifying.
     He was rushed to the hospital 20 minutes away by ambulance, convulsing the whole way. The first seizure finally stopped once there, but was soon followed by another, then another. In all he spent over two hours in grand mal seizures. The doctor, his face grim, came out and told us that he could not go on this way much longer and they just could not stop the seizures. He suggested that we call whomever we needed and then come in and sit with him. There were unspoken words between that doctor and I; they were “until the end”.
     I called my parents and then I called our pastor. He promised to start the calls to everyone else necessary. Then my husband Charles and I went in to sit with our son and say our good-byes. I was amazingly calm as I took Steve’s hand in mine. His wonderfully round and cheerful face was drawn and pale, his eyes glazed over. He looked as deathly ill as they said he was.
     He had another terrifying seizure right after we got in the room. I saw the heart monitor and could see what the doctor meant. I could not imagine a full grown adult withstanding that torturous episode, much less a tiny little infant such as Steve.
     Then a miracle, the first of many in his life occurred: that was the last one he had, at least at that time. We watched and we waited. The doctor’s and nurses started to look in cautious awe at him. They finally decided, guardedly, that the crisis had passed and put him in ICU. We discovered that he had lost 5 ounces that night. It may not seem like much but to an infant at that age it is an enormous amount: a dangerously enormous amount in fact. So much so that when the lab made an error and came to take his blood yet again… I refused them until I talked to the doctor. He agreed to let Steve gain some of his strength back. Eventually he recovered and the doctors felt there was no sign of permanent damage or even that he was epileptic. The seizures seemed to stem from either the medicine or even maybe the illness itself. He had one more grand mal seizure when he was a year old, although that one was determined to be febrile, (caused by a high fever).


     We returned home and resumed our normal routines. For Steve this meant, sadly, being exposed to a father that abused his mother: physically, mentally, emotionally, and even sexually. I did everything I could to protect him and felt that the worst he had faced was to be exposed to that, bad as that was. When he was 18 months old, his father threatened to belt him, which I refused to allow. He was determined, but I covered him with my own body to prevent it and received a belting so bad I had welts from head to toe. From that time to the end of that chapter in our life, I never knew Charles to attempt to strike him, but if he did wrong I got beat even more than usual.
     One time Charles got very mad at me during the course of an argument and informed me that he was unable to conceive children any more. I was astounded. After doing some math, I determined that meant that Steve was born a month late, in fact. His conception was at a time when Charles and I were not together. Naturally, as is the want of all abusing cowards, it was one more excuse to mistreat me further, regardless the circumstance.
Finally, after reading many self help books on the subject, I learned to stand up to Charles. I realized that it was past time for me to get out. I was then and still am now a very deep pacifist. I realized that I had started to have serious thoughts of killing him, and there was only one thing that was stopping me. That one thing was not fear of pain, death, or even jail: I was afraid that if I failed, he would get custody of Steven, and that terrified me beyond all reason.
     I won’t go into all the details how, but after realizing that I was trying to break from him, Charles played a card from his hand I never expected. He made it so that HRS, as it was called then, took Steven from me. The reasons were valid, but Charles was the culprit. I begged them to take me away as well and was told that they did not care what happened to me, they were only there to take my child away.
     Steve remained in the system for a year and a half. The report of abuse was found to have insufficient evidence, and neither of us was listed on the abuse registry. The case worker at that time told me that while it was evident there was abuse; they could not determine who had done it. Complicated by the fact that we had separated and each blamed the other.
     During that time, I had managed to get out on my own. Well, sort of on my own. I was terrified of Charles so I had a friend, Willie, stay with me. We eventually developed a romantic relationship, and had a son together, but that comes later.
      I started meeting all the requirements to get my son back, even before they were formally requested, and added a few more things to boot. I made sure to keep every visitation I was given with Steven, although they were supervised. Even that had an upside as it meant that Charles had to have them supervised as well.
     Steve had been in the process of some testing right before he was removed. Testing that was continued in foster care and through it was diagnosed with ADHD, Attention Deficit Hyperactive Disorder. He was also diagnosed, later in that time frame as having asthma and RAD…Reactive Attachment Disorder. This means that he had a hard time forming attachments to people and would often act out violently. He was all of four years old
The day after Christmas the following year I got my real gift, for I was given temporary partial custody. In other words, he would live with me, but HRS still retained the right to stop custody at any time they saw fit. Unfortunately it also meant that Charles and his new girlfriend also got to continue visitations, and they were no longer supervised, although both households were subject to surprise visits and intense scrutiny. Charles used this time to call in several false reports of neglect and abuse against me. Although none of them could be proven, it made things difficult and created doubt with Susan, the case worker we had at the time.
     I followed Susan’s suggestion and began to keep a very detailed journal of what we did, especially where Steven was listed by time and day. It was fortunate for me that I followed this and found out later that Susan had told me this because her doubts about me, while present, were offset by stronger doubts about Charles.
     One day, Charles unknowingly turned the tables in my favor. He had called in to the police saying that was sitting there watching his son playing in the median of the very busy road that our apartment complex sat on, although we were set well back from it, and more so in the particular building we were in. The police asked him why he didn’t at least take the child out of harms way, to which he replied that, he didn’t want to be accused of trying to take the child, given the legal circumstances. They sent out an officer and called Susan.  When they both knocked on my door and I was told what was reported, I was initially afraid that Charles might have finally succeeded in robbing me of custody. It dawned on me later that I was not told at that time WHEN this was purported to have occurred. Susan asked me if I was still keeping the journal, which I was. She asked me for it and I turned it over to her with what I am sure was a sad and worried face. She wore no expression, but I saw something in her eyes that gave me encouragement. Maybe she would believe me even in this serious plight. She looked through it a little and then complimented me on its thoroughness. I thanked her weakly, not convinced it would hold much weight. She turned to her address/ date book and my heart sank. I was sure that she was gonna take Steve away again, and was looking for the phone numbers to call to generate it. She stopped and then smiled. She showed the officer both my journal and her appointment book. He asked if she felt that was sufficient for her and she said yes and he left.
     I sat there astounded as she explained that the time Charles had called saying that he was watching Steve play in the road was smack dab in the middle of a visit by her. There was no way he could have seen Steve anywhere at that time. Susan was my rock tight alibi and convinced her once and for all that Charles was lying to get custody. She still had to remain as neutral as possible, but she no longer discussed the possibility of Charles getting Steve.
     Soon after this we went into court and HRS supervision was ended. After court, I asked Susan if I could stop Charles’s visitations as nothing had been established in a court and I had full custody, albeit temporary. (The divorce court would determine permanent status, barring any further HRS involvement). She told me that I was correct but that she had to, by her position, suggest that I continue to allow it until the courts determined otherwise. I did not follow her suggestion and I think she knew I would not. The look on Charles’ face as I informed him, the following Friday, was absolutely priceless. I am not one for getting revenge, but it certainly felt good to be the one to make him despondent and angry and not in control about something

     My happiness and freedom from him was, however, a temporary respite. After some time, I had come across a couple that had been friends to me while I had been with Charles, but with whom I had lost touch when I left him. After a short time I determined that they had not talked to Charles and didn’t know all the events that had passed. I brought them up to date and began spending time with them again. One evening I was in a position that I needed to have a babysitter so that I could go to work and my regular and my back up ones were both unavailable. I could not afford to call off of work, so I asked my friends and they gladly agreed.
     After a long hard shift, I returned to their house to get him and found that they had betrayed me. They had called Charles and let him come and take Steven. I called the police but they considered it a strictly civil matter and refused to do anything. I called my lawyer the next day and we tried to get things established through the courts. Charles was allowed to keep him for three weeks and then would receive regular visitation.
     He also secretly contacted social security and was given his check, although he was still not Steven’s primary caretaker. It took me three months to get that straightened out and I was not able to get any other benefits for him in the meantime and was not able to make Charles reimburse me for it at all. I came close to losing Steven because I could no longer pay the bills. I am, however, a survivor and managed to find help in other directions.
     Steve started to show up with little bruises and marks but Charles always seemed to have an apparently logical excuse. He was given permission to take Steve on a vacation to various places including the Grand Canyon. Charles called me with a very weak story about an incident, saying he didn’t want him to come home with a mark and claim I didn’t tell him. I called HRS and told them I suspected it was a lie and that Steve was in danger, but as I could not give them an exact location on them, there was nothing anyone could do. (This was in a time before cell phones so I was at the mercy of an itinerary which he had already deviated from and his calls from locations that, I determined later, he was lying about anyway)
When he returned home, I tried again to have intervention by HRS but they could not determine for certain that the story was truth or not, especially as his wife supported the story he had given me.

     I started another journal, documenting as best as possible any marks that he received on his visits. I tried to talk to Steve about it but he was reticent to discuss it at all and I had concerns about Charles manipulating him through the abuse.
     Steven had several incidents of violence in school and at home including an incidence of kicking a pregnant teacher in the abdomen and culminating in a time when he carved an area into his mattress in an outline around his younger brother, Matt. Matt was about 3 and was on the mattress while Steve was using the utility knife. I went to his doctor in tears about what to do. I asked about help for Steve and the doctor suggested doing a “Baker Act”: an involuntary commitment to a pediatric mental health facility. He was seven years old. My heart ached, but I agreed. He was in there for about 10 days. Between that time and the age of 9 he would go in two more times. We learned that the violence and the fire setting were a part of the RAD. This was further evidence that Steven was likely still being abused.

     Steven, in the meantime, had developed several other problems. After having several tests, it was discovered that he had epilepsy, although not the kind that are more well known that involved grand mal or petit mal seizures. Steve had complex partial seizures. The brain is still having a seizure, but there are very few outward symptoms. It usually entailed him getting glassy-eyed and unable to answer simple basic question, such as his name or the date or where he was. He was put on medicines for it and placed in a special clinic that would monitor his progress and medications.
     He also had a serious problem with maintaining a sufficient weight, mostly from the ADHD medicines he was on. I was constantly discussing the problem with the doctor. Steve’s weight fell below the acceptable level and he was determined to be “failing to thrive”. We went through a nutrionist and even tried using the adult supplement called “Ensure”. (Pediasure, a similar product developed for children was still a decade or so away, sadly). It helped but he still struggled with the problem, so much so that the school contacted HRS and again I had to deal with them. Fortunately, my persistent communication with the doctors about it and the additional measures I tried as well helped. There was further assurance from the doctor that it was mostly the result of side effects from his medicine, and that no; taking him off those meds was not a viable option for him at the time.
     We also learned that he had congenital cataracts. The one in the left eye was small and appeared stable, for the time being. However, the one on the right was very large and was causing a severe vision problem. The pediatric ophthalmologist had us try various methods including contact lens, medicine and patching, but nothing improved the problem. He finally suggested that he have the surgery to remove the right lens. We did so and he had the surgery just before his 6th birthday. He told us that he could not insert an artificial lens as his eye was still growing, but that he could use a contact lens to see if we could help the vision even a little.
      After the first year, we moved to another city and went to a new doctor. After telling her what we had been doing and her examination, she sent Steve out to the waiting room and brought me to her office to talk. She asked if the surgeon had told us that the eye stops growing at age 7 and that we could have waited that year to be able to utilize the internal lens. I was surprised and told her no, he hadn’t. She asked if the doctor had told me that, as there had been virtually no improvement with the contact/meds/patching after the surgery that by 6 months and definitely by one year there was no hope to be had to save the vision in that eye. I was stunned. The left eye had good vision and the cataract in it had remained small and stable. She suggested that we fit him with poly carb glasses, as a precaution to help prevent damage to the one remaining good eye.

     One day, a Thursday, Matthew developed a serious sinus infection; Serious enough to warrant hospitalization. Matthew was terrified of being in the hospital and I felt he needed me with him the full time. Charles was due to pick Steven up on Friday afternoon for his regular weekend and I simply asked him if he could pick Steve up on Thursday that week instead of Friday. He jumped at the chance and called me Thursday night to verify that he had indeed picked him up.
      Friday morning I received a call at Matthew’s bedside. It was HRS calling from Steven’s school. My heart dropped. They wanted to verify Stevens statement that he had spent the night at Charles’ and the reason for his doing so. They then proceeded to tell me Steven was ok but that I needed to come to school immediately. I called Willie and, when he arrived to care for Matthew, I rushed to the school.
     At the school, I was first ushered into a room in the office. In there was a worker from HRS, the school principal, a counselor, and a police officer. I was suddenly scared. The HRS worker asked me again about where Steven had been and when and why. I asked to see him, before I said anything. The worker hesitated and looked at the counselor. He leaned towards me and said that I needed to know that Steven may look bad but that, essentially, he was ok and would be just fine.
     That made me more afraid and I asked for Steven again. The HRS worker nodded to the officer, who went into an adjoining room. A moment later, he returned with Steven. I suddenly understood why they felt the need to prepare me: Stevens face was covered with bruises. I hugged Steven, struggling to maintain my composure, for his sake and careful not to hurt him. He flinched as I touched his back and I looked to the HRS worker. She nodded and asked Steven to come to her. She lifted his shirt and turned his back to me. Across his back were several ugly welts that were clearly from a belt. She asked Steven to pull down just his pants to show me his leg. He did so, although with a quiet and somber look. Right below his buttocks was a giant welt several inches wide and covering the back of both legs. I must have looked alarmed at that, as the worker asked Steven to go ahead and get dressed and would he mind if mom and her talked alone again for just a few more minutes. He walked silently to the room he had come from. The officer moved to close the door but the worker said that it could be left open, so that I could watch Steve.
      She told me that they suspected that it was from a board struck across the back of the legs She said that the bruises were called fingerprint bruises and that they came from applying hard pressure from the fingers to the area. The back looked like it was from a belt.
I know I turned white from the idea, and then red in anger. For the second time in my life I wanted to do violence to someone, and it was the same person: Charles. She said they felt that they had a pretty strong case against Charles and would do everything that they could to convict him this time. At the very least, they promised he would be listed on the abuse registry.
      We went through the process together from the complete exam by the doctor (who told us that all the injuries were superficial and he could find no other injuries but that there continued to be signs of mental and emotional abuse and it seemed to stem from Charles). I recall thinking that, for once, I was glad HRS was there so I wouldn’t have the opportunity to murder Charles. 
     We went through the courts again. I got a restraining order preventing Charles from any contact with either of us and severing any and all parental ties and rights he may have had with Steven. . His name was on the abuse registry, but no charges were ever brought against him. My lawyer talked me into dropping the financial requests of my divorce so that we could end it more quickly. By that time I no longer cared and just wanted it over with. Charles tried a few more times to contact Steve, but the school was instrumental in preventing it and informing me of each incident.






     By now, all of the doctors and specialists had told me that Steven was likely never to be able to be mainstreamed, (a term used to for the process of placing special kids slowly back into the regular school system) and that he would most likely be in at least special classes if not special schools.
     Steven was put into a school that was designed to help kids like him, and he thrived. Unfortunately, it was 60 miles away and the bus trips to and from took a lot out of him and shortened our time together at home. We considered putting him into a residential program where he would stay throughout the week at a home with specially trained people and other kids like him and come home on the weekends. I decided that Steve and I had been through enough separation. I was thrilled when they told me that they were opening a similar school in the small town next to ours.

     I got him set up to start there the following school year. I gave them all his vital information and emphasized what Stevens’s seizures were like and what to look for. One day I was called in to school as Steven had an incident and had to be segregated. When I arrived there, I found that he was in a small room not much bigger than a walk-in closet with a small window and a very large security guard outside of it. I peeked in and found him sitting quietly and staring. I told the guard to let me in immediately. He said he couldn’t do that. I told him that he better or I would call the police, as I needed to determine if he was having a seizure. The guard said no, he had not seen any shaking. I told him that Steve’s seizures were not usually visible that way and I would not ask him again to open the door. He refused and I went down the hall and barged into the principal’s office. I quickly told her that the guard was refusing to allow me to check to see if Steven was having a seizure or not. She followed me out the door and told the guard to let me in.
     After determining that Steve was ok, just tired, I walked him into the principal’s office. She started to object and I raised my hand and said “Stop, I am not leaving him anywhere here away from me. If you wish to discuss this with me then he will remain with me, otherwise we will both leave here for good and I will start any possible legal proceedings against you that I can”. She sat down and motioned us to sit in chairs across from her. She proceeded to tell me that what they had done to Steve was a standard and approved method of discipline with kids of this nature. She also informed me that, although a school, their main objective was to get the children to behave and that education was secondary. After a very short discussion on the matter in which I informed her that children like this were still guaranteed the right to an education and that I was even more determined to see it enforced and her methods challenged, I left. I learned that there was no way to sue them and that the only recourse was through the school board. I tried to get them to change the methods and priority in that school, but to no avail.
     That was when I decided that I had had enough and chose to move across to the other side of the state. There he was placed in a similar school but this one had a strong priority on education. They considered learning discipline as going hand-in-hand with education. I still closely monitored the situation but was satisfied that they were indeed following the principles that they were supposed to concerning special needs schools. Steven thrived and started getting very good grades.
     The school also had physically challenged children there and the teachers found that Steven worked well with them, especially those that had speech impediments. Steve had gotten very good at understanding his brother Matthew, who had CAPD, (Central Auditory Processing Disorder). This is a disorder that occurs usually in children that have frequent ear infections during the time they are learning to speak. What they hear is similar to what you or I might hear under water. They carry that way of hearing into their speech and, in severe cases like Matt, can be very difficult to understand. It doesn’t mean they have hearing loss just that they need to be retrained in speech. Steve carried this in to his dealings with the other speech impaired kids and was even able to help the teachers.
     He went on to the High School there and entered a program that would help him learn what it would be like to be in a work environment. He worked in the maintenance department of a nearby hospital. The kids didn’t get paid or even get school credit, but they learned about how to function in that environment, and Steven loved it.
     At this time in my life, things had come about that I had decided that it would be a good idea to leave the state. My best friend and I discussed it and we chose to move to New England. There I learned that they didn’t have programs that were similar to the ones he had been in and the only special needs programs were for those that were severely mentally challenged and which were not appropriate for Steven. They put him in regular, albeit lower level, classes and continued to monitor him and help with his special needs; He was allowed to sit in the front and received special assistance with his work. His GPA was not high, but it was passing. 

     Then came the day…. graduation. The proudest day of my life was the day he walked on stage to receive his regular diploma from a regular school in which he had attended regular classes, despite all he had been through and all the prognoses to the contrary. That is what makes my son my hero.