Today

Today was a rather tough day for me personally. The morning was going smoothly, and it was time for me to take a fast shower. My two boys, E and D, were playing nicely together. After a 15-20 minute shower, E entered my room and fell on my bed. He was crying and hyperventilating. When I got him to calm down, he explained to me what D had done. Meanwhile, D entered my room and started screaming over E. What I gathered was that E decided he was done playing with the toys he and D had been playing with when I went to shower. Now, these are E's toys; he even paid for them with his own money. D asked if he could continue playing with them. (To be fair, E usually would say 'yes' here, but D has destroyed some of E's toys or lost them). Obviously, E said 'no'. What happened after was just a mess. D started screaming at him, calling him names, and saying some horrible things to him, like: "I wish you'd never been born", "you're the worst brother I ever had", or "I wish you died in the surgery". He then proceeded to pick up a wood sword and strike E with it repeatedly. E, in turn, took the sword out of D's hands, giving him a slight scrape. I asked D if this was all true. He said it was, but all of it was E's fault because E had started it by saying 'no'. D's exact words were that he was 'exacting revenge'. I tried to talk to D about how wrong his behavior was, and he began demanding that I punish E for 'hurting' him when he took the sword out of D's hands. I tried to explain that D's injury would not have happened had D not been hitting E with the sword to begin with. But, D just started screaming that this proves that I love E more and that I hate him. I tried to reason with him, but of course, there wasn't much I could do. He was beside himself with rage. Tomorrow is our first Psychology appointment. The first one is just for my husband and I to discuss things that have been happening. Next week, they will meet and examine D. I pray that this series of appointments can give us some answers.

Psychology

Psychology did call the next day. The man informed me that there were forms we needed to fill out. He wanted one to be filled out by us, the parents, and one to be filled out by his teacher. Since we homeschool, he suggested that my husband fill out the parent form and that I fill out the teacher form. These forms were exhaustive, to say the least. They took about four hours to complete! As we answered the questions, we realized D had many symptoms that we didn't even realize. Forgive me, but it's been two months since we filled out these forms, and I don't remember all the details of these questions. But, trust me when I say that I was shocked how many times I answered 'yes' to those questions. There were some scary questions too. Those I remember. Some of them were whether our son had ever vandalized property or sexually assaulted another child. Let me tell you, those were frightening questions. It makes you wonder: if you don't get help, is this the road you're on? Our appointment with Psychology is on August 6. First, they'll meet my husband and I. The following week, they'll meet D, and then the third week, they'll meet my husband and I again to discuss what they think is going on. I think that about catches you up on what's been happening in our lives since December 2012. I hope for this blog to be sort of a journal for me to discuss the things going on daily in our life. Life with D has not been easy since we filled out this form. I have struggled greatly with my feelings toward him. On a level, his behavior and our lack of knowledge on how to help has caused stress between my husband and I and our relationship with our other children. I feel at a loss most days. I'm not depressed; I function quite well. I exercise most days, run my errands, and take care of my kids. It just feels like my heart's not in it. Emotionally, I do not know how to connect with D anymore, and I want that back desperately. With Psychology, I'm not looking for an easy answer. I'm a little hesitant of drugs. I'm not afraid to work hard with my son, but what we're doing is not helping. My hope with Psychology is that they can give us better tools to help our son. I do know that he struggles almost daily with Chiari headaches, and I'm very aware that that could be a big source behind his anger and aggression. We're just looking for some help.

May 22

May 22 arrived and we headed up to our local Children's Hospital. The neurosurgeon was four (!) hours late! They did take us to an exam room after an hour, and we waited there for three hours. D was understandably full of nervous energy. He had a few angry outbursts in the exam room. I had brought cards, the iPad, books, snacks, and drinks. Those helped for a bit, but three hours is an awful long time for an eight year old to wait! The nurse kept coming in offering us food and drink, but she never could give us an update on the surgeon. After three hours in the exam room, he showed up. This is the same neurosurgeon that operated on E, and we really like him. He examined D thoroughly and then took me into a separate room. H showed me D's MRI and explained that his Chiari was 11mm, but he pointed out that D did not have a syrinx. So, it was not as severe as E's. He did not want to perform surgery on him at this time. I talked to him about D's behavior concerns. He told me that that was nothing new to him. Most Chiari patients had other disorders (such as: ADD/ADHD, Bipolar, Depression, Autism, ODD, etc.) He also told me that there was some talk about whether Chiari caused mental disorders because so many Chiari patients were diagnosed with them, too. He referred us to the Psychology department at the hospital. Concerning the Chiari, the neurosurgeon said that D was young to be diagnosed, and obviously, he has a lot of brain growth left, so they'll have to keep an eye on it. It may get worse like E's, there's a slight chance it could get better, or it may stay the same. He wanted to wait a full year to repeat D's MRI, so he will have a repeat in February 2014. The neurosurgeon told me that someone from Psychology would call us the next day.

Anger

During those two months, I seriously struggled with my own anger over how our life was going. My son continued in his aggression and anger. He was tearing up my home and my things. He was screaming things at me like "I hate you!" or "You're the worst thing that has happened to me!" or "I never loved you!" I know these are the ramblings of an 8 year old, but they still hurt. He'd never been like this before. He would also scream those at his brother, E. I wish I could say I handled it all perfectly, but you would see right through that. I have 4 friends who know the details of how bad it is on a daily scale. But, I wouldn't even reach out to them. I just wanted to lock my doors and close the curtains and let no one in. D would also punch my husband and scream at him. No one was immune to his angry outbursts, not even our family dog, at times. One day, I was driving my kids home from a party, and D asked me a question. My answer was "No", but I prepared myself for the fact that he was going to react angrily, and he didn't disappoint! He started screaming and kicking my chair violently. Then, he actually unbuckled, stood up, reached through the bars in my headrest, scratched the back of my neck, and pulled my hair. I pulled over. I was unnaturally calm. I turned around and asked him with a firm voice to not hurt me. He replied that he "hated me so much" and he wanted me "to feel how much he hated me." I told him that we could be in an accident, and he said that he "hoped we were". He did finally sit back down and buckle up. We resumed our drive home. My other kids and I were quiet, but occasionally E would speak, and when he did D would either scream "you're stupid" to him, or he would scream "blah, blah, blah..." So that we couldn't hear E anymore. E eventually gave up trying to tell me his story. This marked a scary moment for me. I'd been hurt before by D, but it was usually because I'd stepped in the middle of an angry outburst. His hurting me was never intentional - before now. I struggled with my feelings for D. May 22 was drawing closer, and I couldn't wait. I was hoping for some answers - and help.

After the Diagnosis

Let me just begin by naming my boys, as this is getting confusing for me! :) My son that had surgery is named E (for the sake of this blog), and my son recently diagnosed is named D (for the sake of this blog.) After the initial diagnosis, D would go to his room for about an hour every day and cry. I would try to comfort him, but he would beg me to leave him alone, so I did. So very heartbreaking. After the first week or so, his sadness turned to anger. He began by screaming. Pretty much whenever he didn't get his way. And, these screams could last for HOURS! We tried to talk to him and to discipline him, and he would just get more aggressive with the screams. He did that for about a week or so. Then, he escalated to throwing things. Little things. He didn't give up screaming either. He would pick up pens, pencils, shoes, clothing, etc. and pitch them across the room. At first, I was shocked and didn't know what to do. I would get angry, which he was able to match easily. I would send him to his room, and I would clean up his mess. Then, I realized that I should make him do it. So, I would watch him throw things and calmly tell him that when he was done, he was going to have to clean them up. It was so painful to step over these items until he was done throwing a fit. Bear in mind, he couldn't do anything else (like play video games, play outside, watch tv, etc.) until he cleaned up his mess. He always would, but it would usually be a few hours after he created the mess. After a week or so of that, he began pushing over furniture! He would push over kitchen chairs, living room chairs, a side table, etc. Physically, I was no match for him. With the adrenaline pumping through him, I actually would get hurt stepping in. During this time, he also blamed his brother, E, for "bringing Chiari into our family". So, he would 'attack him'. He would try to hit, push, kick, etc. I would definitely engage then, usually resulting in an injury. At this point, I called the pediatrician for help. I sobbed while on the phone with her about what was happening in my home. And, I didn't hold back; I told her everything you just read here. She said to bring him in in two days, and she would discuss anger control issues with him. Yeah, help...finally!! But, the following day, her nurse called me and told me that since D had a "documented, diagnosed brain condition, there was no need to bring him in because there was nothing they could do until neurosurgery cleared him." I was shocked and started crying on the phone and asked her to explain. She said that it wasn't like D was "homicidal or suicidal", so it really wasn't that bad. I told her that at times D would say that he wished he was dead, and the nurse told me that that wasn't suicidal. I hung up, sat on the floor, and cried. D's appointment with neurosurgery wasn't until May 22, so I prepared for my next two months with my angry, aggressive child.

Here We Go Again

A few weeks later, my ten year old had an appointment with his neurosurgeon. We were told that my son's Chiari had comepletely healed, and the fluid in his spinal cord had decreased by half. He was no longer in danger of paralysis. The neuro told us that tackle sports (hockey, lacrosse, football (that one hurt), and any others) were out for life, but he said that roller coasters were ok as long as my son didn't keep doing them if they were hurting him. Good enough. I mentioned my eight year old son to the neuro and asked what he thought. He told me that my other children were at a high risk because they believed Chiari was genetic. So, he told me that I knew the symptoms, and I was to keep an eye on it and get him in to our pediatrician if symptoms continued. As you probably guessed, the symptoms continued for my eight year old. He complained of a headache roughly five days per week, so by the fourth week of complaint, I took him to our pediatrician. The doctor talked to my youngest and examined him and then told me there was "no way' he had Chiari because he was too coordinated. He had my son walk the grout line between the tiles in the exam room. He had to walk heel to toe. My son was able to do this without any swaying or falling, so he told me it wasn't possible. However, I mentioned that my ten year old could've done it as well before his surgery, so to me, that wasn't good enough. He also told me that even though my son felt headaches at the back of his head (where Chiari headaches happen), it was more likely tension headaches, and when they proved that my son didn't have Chiari, he would need therapy to find out why an eight year old boy would get tension headaches. He didn't feel we really needed an expensive MRI, but with our family history, he was willing to order one. Needless to say, I wasn't happy leaving his office. A few days later, my son had his MRI at the Children's hospital. About a week later, the doctor called and said that my son did in fact have a Chiari Malformation, and it measured 11mm. He was shocked and apologized to me. Our Chiari journey continues...

Surgery

As 12/12/12 approached, I read everything I could get my hands on about Chiari and about how my son would be feeling. I read Conquer Chiari: A Patient's Guide to the Chiari Malformation by Rick Labuda. My parents came up two days before my son's surgery to help care for my other two children during his surgery and recovery. My son was not even nervous, at least outwardly. He seemed so calm. The night before, he even put on a magic show for all of us. I will treasure the memory of those days leading up to the surgery in my heart. On the morning of December 12, we had to arrive at the hospital at 7 a.m. The surgery was to begin at 9. There were a lot of pre op things to get done, and we were given time to visit and pray with our son before he was led to the OR. That was tough - watching them wheel him into the OR and having to stay behind. In the waiting room, a close group of friends waited with us, prayed with us, and visited with us. We are dearly loved, and I will never forget it. The operation was to take 4-5 hours, but I believe he was done in a little less than 4 hours. When we met with the neurosurgeon, he told us that there were no complications, and our son did well. He performed a craniectomy and a duraplasty. He also found that our son's arachnoid was enlarged, so he also removed a portion of that. To top it off, a stent was placed at the opening of our son's spinal cord to keep it open and the fluid flowing. After all that news, we were taken to our son's room. He looked so peaceful sleeping. He pretty much slept for two days, only opening his eyes to vomit. After that, he started to wake up, and boy was he in pain! He vomited a lot. He had physical therapy to ensure that he would be steady on his feet. Because of the constant vomiting, they wouldn't discharge us from the hospital. They finally discharged us on our eighth day there. Our son had lost a lot of weight from the vomiting and not being able to eat, but it was so great to be home. His recovery was long, slow, and painful for him, but by mid February, he had turned a significant corner and started to heal at a much faster rate. Also in February, I noticed that my other son (8 years old) complained of headaches for several days in a row. They didn't seem to stop him from enjoying life, so I didn't ask questions, but by the fourth day in a row of mentioning a headache, I finally asked him where it was. He pointed right at the back of his head, where the back of his skull ends. My ten year old says to me, "Mom, that's where mine are." I cried.