Saturday, January 2, 2010

The Beginning Part III

I was thinking about all of these "Beginning" post and I started laughing cause they are so long. I think as you read on you'll see why I post these as "The Beginning", there has been so much that has happened now, and I really feel like we just started "The Middle". I don't really like that title, so I'll have to come up with something better. Anyway, here we go.....

Tuesday the 17th of March 2009, it was 6:35am, Sarah and I were both sleeping in the living room, on the lovesac, when we heard X fussing. Sarah then said she could hear him having a seizure and I remember her yelling "Dan!!!" When she entered his room he was lying in his bed with his right arm bent and shaking. Xanders eyes and mouth were open and Sarah had picked him up and walked into the living room. He fussed for a couple of seconds then became quiet, aside from the occasional moan. He was still having a seizure, and about 2 minutes into it he wet himself. The seizure continued for about another 10 minutes.

I remember watching Sarah hold my little boy in her arms, she was stroking his hair and gently talking to him in only a way that a mother could. I can recall her saying "Dan, he's not snapping out of it" I stood above them for a few seconds and said a quick prayer, "God, please don't take my baby from me, please". I had never felt so helpless, so scared, or so numb. I took a knee next to them and prayed over him and just talked to him, telling him it was OK and that we were right there by him. I refused to allow my emotions to overwhelm me, and I shut out all fear, tears, and thoughts. For me one of the worst parts of this whole ordeal was hearing Xander try to talk. You could hear his moan and could tell he was trying to tell us something. Gurgles, I remember gurgles, in my line of work, gurgles are either a slight sign of life, or a really bad thing, usually the later. Just a side note Xander would tell us later that during this whole time he was telling us that he was OK.

After the seizure X was still unresponsive for about another 10 mins. he was looking around, but with a complete blank stare, like the life had been taken out of him. His mouth was open, and he was drooling; Sarah would later say it was like he was a child with severe autism. Sarah handed X over to me, and called a neighbor, asking them to watch our twins while we rushed to the hospital. They graciously offered to help, and watched the house while we rushed to the hospital. While she did this I changed X; I know some may ask why I changed him, I did it because there was time, and I didn't want him to be embarrassed, and I didn't want him to know he lost control like that. If you call it silly, or a waste of time, I understand, but to me it was something little that I could do for him until we arrived at the hospital. I didn't call 911 because it would have taken them longer for them to get to our house than for us to drive there.

By the time the neighbor arrived, we had him in the truck and ready to go, by now he was starting to come back to. We arrived at the hospital and it was the same routine as last time. It was super frustrating thinking that we were going to go back home one more time, with no more answers than what we already had.It was 7:10 before he said a word to us, and then he began complaining of a headache over his left eye. X threw up in the room 2 times, and had a hand "Wiggle" at 10:23am. Finally they decided to keep him overnight, at last we would get some more answers, so we thought.

After being placed in our room, we waited for the neurologist, we had other doctors and nurses come in and we would have to tell them the same story, over and over again. When the neurologist finally arrived we were extremely disappointed, they (there were 2 neurologist doing rounds today)told us they THOUGHT he may have simple partial seizures and wanted to put him on meds. Sarah had already researched the meds. he could be on, and did not like it. It was Trileptal, a fairly new drug, with side affects we were not comfortable with. It was hard for us to take this since they were making an educated guess, and telling us that the soonest they could get us in would be three months from now. I was thinking "What the Hell do you mean three months from now. You want us to put our kid on meds. that may not even be right for him". I understand that they are smart people, being neurologist and all, but what if it was something more than just seizures. I was pissed to say the least, and I felt like we were being blown off. Three freakin months before he could be seen was ridiculous, what if something went wrong before then.

Our Pediatrician came in to see X, and gave us the name of what she and other local pediatricians considered the best neurologist in the city. She told us that the Dr. we had seen was good, but she thought this one was better. There was other stuff said as well that made us reconsider our options. After all was said and done we were able to leave that same day. I felt it pointless to stay overnight if they were not going to run anymore test, and it was more of a sleepover than an effort to figure out what was wrong. We left, and I was so irritated, for a number of reasons.

What I am about to say is my thoughts only, I am not saying this is the way it is, or "gospel". I have talked to numerous men about this topic and have experienced so much in this area that I feel the need to speak on it. Maybe its so a wife or girlfriend may have a better understanding, or maybe I just want to talk about it.

As a Man, and Father, I feel an ingrained sense of duty to protect my family, and to lead them through "Storms" the best way possible. This was not the best way possible. I was mad because I couldn't "Fix" my son, and I couldn't make it easier for my wife. I was mad because I had to watch my son go through things I would never wish upon anyone. I was mad that I was so helpless, and useless, and I felt that I bared the sole responsibility for this. What had I done to cause this? Was this some sort of test I was being put through, and if so why? In the months that would pass I would on a regular basis pray and Beg God to give this to me instead of my sweet Xander. I was upset I was not smarter, maybe if I was smarter I could help him more. I was mad I was not wealthy, maybe if I was rich, I could pay for the best, and this would all be fixed. I felt like, for whatever reason my family was getting the short end of the stick, and it was not fair. They deserve the best, and I can't give it to them. Lucky for me I have a great God, wife, extended family, friends, and Christian family to help me through this. I still struggle with a lot of these emotions, but I am grown, and much wiser than I was before, so I can handle them.

The next post will begin our journey with the Mayo Clinic, stay tuned, it's coming in the next day or two.


  1. Dan, thank you so much for sharing from your "father" and "husband" heart, and letting us in on your thoughts and feelings as you walk this path. You will probably never have a reason, at least not an adequate one, for why you and your family are experiencing all of this. So many painful things in this life don't come with answers attached. I'm not sure whether or not this is helpful, but I want you to know that God is using you and your writing to encourage and strengthen our walk with Him, and to help us know how to better pray for you and your family. We love Xander so much, and will continue to pray for him until God heals him completely.

  2. Dan & Sarah,
    I am moved beyond words as I read through these posts. I find myself choking back the tears as I read about your struggles & triumphs. My heart aches as I read about the challenges you have faced as parents. You are an inspiration to us all. I don't mean that to sound cheesy, but those are the best words...You inspire me. Thank you so much for sharing this with us. I love you guys, Erica