Thoughts

So its officially Christmas eve, I just returned from my second trip from wal mart . I get so confused with this time of year. I always wonder why people don't celebrate friends and family but once a year . Why is Christmas the only time we have baking festivals and way to many social activities to actually attend? I'm not a scrooge, I love Christmas time. I just wish people would make it a point to show gratitude and humility throughout the year. Seems strange to me to see all the people out in the stores milling around for something, anything . They almost seem desperate , not happy and downright miserable. I don't ever want to reach that point . Even though this last month and majority of the last year has been a test to my sanity, I want to be sure that I don't forget the reason for the season the rest of the year. Very cliche , but that's whats on my mind this Christmas eve.

Feeling Strange

I'm sure I should have a better word then strange. I don't . Its been a strange week. I've been sleepless, restless, spiritless. I've jumped at every sound, every movement, every peculiar thing. Stalking the unpredictable seizure & the neurologist that's out of town. I shouldn't complain, the doctors office called every day to check on Alex until he was back in the office today. The result was reprogramming his VNS implant, and adjusting meds, getting rid of one of the culprits that may have left the "big one" slip through. We also got a fresh script for Diastat ( the rectal gel that stops seizures ) we did not have any this time around since it had been 10 years . So ... I rest a smidge easier knowing I have that in the house.
Meanwhile, Andy and Aaron have returned from their trip to St Louis with my mom and dad, Aaron seems to have caught quite a cough. Hmmm... so now I wonder ... should I be worried about that?! I feel guilty, as if I have given all my energy to Alex and left the younger boys in limbo. I can't win this conversation with myself.
As for tomorrow, Alex is returning to public school, online-homeschooling just isn't for him. He will have a modified schedule with a late start written into his IEP so it allows for any medical issues. I'm uneasy about setting him loose again. I enjoyed having him under my wing the last few months, but at this point I have to accept that I am not the answer to his learning disabilities. I can't be sure public school is the answer, but I know the only private school in this area is 3,000.00 a year and the money fairy hasn't been visiting lately. Admitting defeat is a tough pill to swallow.
I'm looking forward to getting back into the swing of things. We are still scheduled to have Christmas on the Outer Banks. It will be good for all of us to get away and find some solitude and rest for a few days.
There is so much more going on but I suppose I will save that for another post. Just felt like writing tonight. So there ya have it. Strangeness!

It was not such a good day a few days ago

There are certain days that are burned into our minds forever . Last Thursday was one of them. On a normal day I take the younger boys to school and Alex to my mom for the first half of the day. As ironic as it is, Doug happened to have a flat tire when he left for work, he ended up taking my explorer to work. This meant that I called on my mom to take the younger boys to school and then come back to get Alex and I (her small truck won't hold all of us). After stopping to get us we noticed Alex had started a series of myoclonic jerks, which is completely not unusual for mornings. He generally works through them in 10-15 minutes. We stopped and picked up Orange Juice hoping it would help to get something in his stomach with his meds perhaps to help dissolve them quickly. We were on the road for no longer then 3 minutes when the most incredibly terrifying scream pierced through my moms truck .

Let me build the picture, my mom is driving, Alex is sitting behind her in one of the extended cab seats and I'm in the passenger seat. I remember in slow motion looking over my shoulder at the source of this horrible scream and seeing his eyes in the back of head, his whole entire body thrashing , it seemed as though he had stopped breathing, froth at the mouth. He is 5'8 , weighs 160. He is banging his head back against the glass window, his arms are hitting at my mom over the seat , legs pushing her seat forward as far as possible. We are in the middle of a busy state route. I leap as far into the backseat as possible trying to hold down his limbs and protect his head, and keep him from thrashing my mom. We are in mid transit to my work , so I am screaming at my mom to hammer it so we can get him to the hospital. He has not had a grand mal seizure in 10 years. This is scary, that is such a weak word for what I was feeling. The last time we experienced a grand mal he was small , I could protect him, I could hold him.

Realizing we were better off to stop at my employment and then call a squad we took that route. When we arrived at my job , he had started vomiting , that's normal for this type of seizure. I realized he had bitten off the tip of his tongue. The guys from work rushed out to get him out of the small backseat and we layed him flat . He came back to us for a few minutes and then began with more mycolonic jerks , strong enough that he had fallen unresponsive again. The ambulance shows up and instantly gives him oxygen and starts an IV with anti convulsant drugs. They cart him to the ER where it seems like an eternity before he stirs and gives us any indication that he is waking up. He ended up with some really sore muscles from all the seizures, a few bruises from hitting himself against things and grabbing parts of his body, and of a bit of his tongue gone.

I haven't even been remotely the same since. I moved his bedroom back into Andy and Aaron's room. I sleep with one eye and two ears open. I am a mess. He tells me I overreact. Its crazy how he is ready to move past this and forget it happened and I keep reliving it every time I close my eyes. I completely and logically understand that millions of people have seizures everyday. I can't get over seeing his body completely taken over and feeling so helpless to relieve him of the pain. I am certain the adrenaline didn't leave my body for 3 days at least. I had believed we were past him having grand mal seizures, I was wrong. One of the worst feelings is knowing I can't predict them, I can't stop them , feeling completely and utterly helpless at the mercy of his electrical brain activity. Knowing that I have fought so hard to keep them at bay and feeling like I have failed him. Why after 10 years did the big one have to come back? I had grown accustomed to his small myoclonic jerks, his tonic seizures. This I was blindsided with.

I didn't mean to write a book, I needed a place to put it into perspective. I'm amazed that we can do so many medical miracles but we can't cure seizures. It makes me heartsick to think of other children going through this. All I want for him is what every parent wants for their children. I feel helpless and I hate that. Thank You for letting me vent on my blog :-/