Thursday, August 11, 2011

I'm coming home.

      20 of 24 hours of my day.. since March.

Heal Me by Melissa Etheridge (Please listen if you have been with me even through just a part of this journey.  The main person I want to hear this is my wife, Shiela.  I'm coming home.. it will take a bit, but I'll be me again.  I love you and Ben and want my life back).

Thursday, August 4, 2011

I need a "do over"

The past two days have sucked. Today I have had 2 or 3 seizures and a migraine that lasted all day. I slept for a lot of the day.. something I've been trying not to do because it is Ben's last week before starting preschool next Thursday. I felt guilty about now going to his swimming lesson today but was relieved when Ben and Michael arrived back home just minutes after leaving for his lesson after learning that the pool was shut down for the day due to someone having an accident of one sort or another in the pool. My niece, Ash, is a lifeguard this year so we get all the nitty gritty about the town pool.

Tomorrow is Ben's last lesson. I am going to try to go. We'll see if that happens or not. With the migraines being so bad today, chances are it will be hard getting up tomorrow. I will try though.

Next week Ben will be home with Michael Monday through Wednesday before starting at preschool.. *cross fingers* I'm going to miss him even though he's crazy active.. :D

Not much else has been going on. We made some changes to remove some minor stress.. whatever we can get rid off, we do.. every bit helps.

ok.. i need to watch more shark week before Benji gets home. *chomp*

Tuesday, August 2, 2011

A wise man once said...

A friend of mine in college once offered what seemed to be, at the time, a colorful and exaggerated piece of advice. I believe I was stressed out about some class or an upcoming audition at the music school that we had to subject ourselves to every semester. He and I worked at a computer lab together and spent most of our time trying to hack into various servers on campus and I taught him various skills like how to decode porn on the old school version of the internet. I didn't show him how to do it with porn specifically.. I remember finding an encoded (uuencoded, to be specific) photo of the Gerber baby and walked him through the steps of making that into an actual photo on the computer. He was a bright guy and was able to apply his new-found skills in other manners. I didn't tell his girlfriend.

Anyway.. he told me that when he gets stressed out, he just thinks "oh F&%^ it" silently and moves on.. just tossing that stress aside. I couldn't comprehend how one could do that and actually have it work.. but I have found over time that I have used that approach to problem solving once in a while. Amazingly.. it has worked wonderfully each and every time. This guy may have been on to something.

Monday, August 1, 2011

Remember that Preschooler?

Benji is about 4 and a half. He will be turning five in December. So far, we have kept him in awesome awesome home daycares. In Boston he was at Las Floritas (Little Flowers) and the hardest part of moving away from the Boston area, by far, was leaving their family. We try to stop by for visits when we are in town, but you know how it is.. time flies. I'm sure I spelled their name wrong. Ben picked up Spanish much quicker than I did. His time there was the reason I am called Otra Mommy.

When we moved to Springfield, we dreaded the daycare hunt. We didn't feel that he was ready for a formal preschool yet, so we chose TT's Tot Lot. Awesome Awesome Awesome. Can't say enough good things about that family.. especially after they cared for Ben as the tornado ripped through their neighborhood about 100 feet from their house. We miss them, but they are close enough to visit.. we just need to find time.. time has been elusive lately.

Now that we're back in CT.. the search has been on again. We moved into town too late for the public systems pre-K program. The school system is debating putting him into Kindergarten so he can receive speech services and any other services he may need. Our plan is to start him at a private preschool in town late next week and then once his testing has been completed at the public school we will work out some sort of hybrid where he will be bussed to North Street for his services and bussed back for the private school's kindergarten, which is more one on one. Assuming he does well, we will then transfer him to public school kindergarten the following year.

As a present for reading all of this.. here are some pictures from baby-benny to current-benji...

Sunday, July 31, 2011

My beautiful boy

Benjamin decided that just days before we left for the 2 day drive to Kentucky to learn Bon Jovi's "Livin' on a Prayer".  He basically stuck to the chorus and of that part.. the screaming as only late 80's hair bands can do was his favorite part.  Nick managed to catch this video clip which shows how Ben spazzes out when he is overstimulated by having WAY to many family members in one house in Kentucky.. and then at the very end transitions into an english boys choir version of the Livin' on a Prayer song.  I only wish he had kept going so that it caught how he says "Libbin on a pra-Yah"

Too much information?

Someone commented the other day asking if I'd really want to see a video of one of my seizures.  I have actually given this a lot of thought.  Shiela and Ben know what the expect the best and have seen the most variations.  Fun experiences like falling off the toilet and laying stuck between the washer and dryer and the tub with my ass front and center for when the EMTs arrived.  I'd rather not see a video of that one.

Today I woke up on my knees in front of the couch with my back arched over so that my head and shoulders were on the couch.  I remember thinking that I needed to get up to get my morning meds and then I remember smelling smoke just as I was standing up.. then poof.. next thing I remember was Shiela helping me back on the couch and being in a whole boatload of pain.  Aside from the fall or whatever I did to get into that position.. it must have been a pretty mild one because it didn't seem to take long before I was up and moving/talking again.

I've had several seizures in the waiting rooms at the Emergency Room at Baystate Hospital (ask me how much I hate them).  I've had a few in ambulances.  I've even had a few in the exam rooms at my doctor's office.

Oh wait.. then there was the one I had at Red Robin.  Shiela told me that no one noticed.  Yeah.

I guess that what I'm saying is that there are a lot of people who know what I look like, however graceful or freaky, when I have a seizure.  My cousin was even colorful enough to let me know that I make a "god-awful sound".   I am the one person who knows nothing.  I have no memory of any of the seizures.  I remember smelling smoke each time.  I sometimes remember moving to a safe location.  Then I remember waking up feeling like I spent a few hours running on the beach and swimming in the surf... minus the tan.  Oh.. and my head feels like my skull has been cracked open and broken glass shoved into my eyes. 

I know what Shiela has told me and all of my doctors about what happens during a seizure.  Is that enough?  I am not sure.  I'm not sure I want to see it.  Part of me does.  Part of me is embarassed to know that there is part of me that other people have seen that I am totally unaware of.  Part of me thinks that the lack of consciousness is a form of blissful ignorance.

For the moment.. I won't be hiring a professional videographer.

Saturday, June 4, 2011

It's the thought that counts

I have a lot of ideas and would like to write. But. I have a headache and I am exhausted.. so I'm going to go hook up to my brand new CPAP and get some sleep. Maybe tomorrow. Cross your fingers.

Over and out.