Distractions and Directions

Wow! I was on a roll for a little while there. Kels has once again lost seizure control and so we are back in the cycle of playing with medications to see if we can gain it back for a while. She's been having more and more auras and seizures over the last couple of months, but the kicker was last week. She was on campus between classes when she lost her vision. (Quick aside -- were you aware that most community colleges do not have on-campus nurses or infirmaries? Yeah, neither did I.)

I called her neuro to report in with this relatively new aura symptom and he was concerned enough to send us to the ER. After looking her and checking her out, it was decided that this was probably the beginning of a massive wave of seizure activity so they load-dosed her with IV Dilantin, which she immediately had a reaction to. It not only burned her veins, but caused her blood pressure to drop some. After flushing the line and trying twice to give her the IV Dilantin, it was decided to give it to her orally and have us double-up on her regular seizure meds for the day.

Last Friday when her neuro called to say that he would like to keep her current seizure meds (Keppra, Lyrica, and Klonopin) as they are because the dosages are already high, and add Lamictal back to see if it works for her control. Right about this time her brain activity got so overwhelming that she began to lose sleep and then total insomnia while being so very tired she couldn't hold her head up. So her psychiatrist added to the Lunesta a short acting Ambien to see if helped. Last night was her first night taking it and it seems to help some. Between the Klonopin, Lunesta, Ambien, Melatonin and Benadryl, it's a wonder she doesn't just conk out "thinking" about bedtime. Geez -- I'd be a zombie.

In other news...Right after we got the ER last week, I decided that we would out of courtesy let the ex know via text that we were at the ER for preventative reasons per the neuro (even though Kels didn't want him there and she IS 18 and could have prevented it). Instead of seeming concerned, the text we got back was angry-sounding and demanding to know when this happened, why didn't we let him know sooner, and had we planned to tell him at all? Not immediately asking about Kels, but all about the anger and accusation. I am SO very tired of all of this. The girls choose not to be around him and we constantly try to encourage them to talk to him, spend time with him. They just do not like to. He believes (and I know this for fact because he has stated to me and to the girls multiple times) that I prevent them from seeing him. That I trash-talk him in front of them. That I am withholding "his" children from him. This has NEVER been the case, and it is extremely frustrating to be accused of something over and over and over that isn't true. He would much rather believe that I have something to do with his kids not liking to be around him than the fact that it just might be his own attitudes and behavior.

I need to quit before I rant too much longer.

Forgiveness

I have to forgive myself for not being a better parent. I know that parents everywhere have their regrets, and I'm not saying that my regrets are bigger than others. BUT.

As with most families that have a child with special needs, whether mental, physical, or medical, the attention during times of crisis turns mainly to that child, with the understanding that they need you more right then. Over the last ten years, especially when I was a single mother, it seemed as though all my waking attention and concern was focused on Kels. I know that Kate and Cam are great and well-adjusted girls; however, I feel like I let them down in some way. There were days of tears and tantrums when Kate desperately needed her mom to just stop and love, but I couldn't. There were days that Cam took more care of herself than I did, I just couldn't be available because of being on seizure watch and after-seizure care. That regret is something that I'll probably carry all the way to my grave.

There's an amazingly inspirational blogger that I read pretty frequently - Anissa at Free Anissa (link to her blog in my sidebar). Quick background, one of her children was diagnosed with cancer and the family went through treatment. She wrote a post titled "A Letter of Apology to My Kids." While Kels doesn't have cancer, but chronic and severe seizure disorder instead, her words pretty well sum up the way I have felt lots of times over the last 18 years. Take a minute and read, you'll gain a whole new insight into the mind of a mother with a child with special issues.

First Day Blues

Today two of my girls started back to school. Kate as a high school senior, and Cam as a brand-new Jr. High 6th grader. Kels will begin college classes on the 30th. I look at my girls and wonder where the time went. Wasn't it just yesterday that they were infants on my hip?

The hardest one to send off was Cam because she's so much younger than her classmates. She so very much a little girl, naive and sweet and my baby. I really want to keep her that way as long as possible, but I know she's got to grow up and go on.

I am so very proud of my girlies -- the best things I have ever had in my life.

Filing Makes Me Cry

My project for the last week has been to go through about two years of personal papers, filing, shredding, and just generally cleaning up the office area. This evening I was sitting on the floor going through a huge stack when I came across a stack of sympathy cards and the newspaper obituary from mom's passing nearly a year ago. All of a sudden I went from bored filing to sobbing uncontrollably. Hate when that happens.

Filtered

I'd like to apologize to my readers (all three of them). It's been quite a while since my last post, but there have been good reasons I promise! I can't talk about work because, hello! I need the paycheck. I can't talk about school, because that would lead back into talk about work (see above). I am reluctant to talk about the girls because of certain legal action that is in the works. So, how's the weather been in your neck of the woods??

I Have Been to Barcelona

Last night we went to dinner at this great little Mexican place around the corner from our house. It was one of those nights where Kait indulges us by gracing us with her presence. Moms of teenage girls – you know how this goes – the horrendous eye-rolling every time I say something, the deep, soul-cleansing sighs when I try to be funny, the put-upon stares to other dining patrons. After about half an hour of trying to engage her in conversation I just gave up.

Right about this point the waiter comes to the table to ask if we needed anything and from the other end of the table I hear Cam say, “I have been to Barcelona.” This was so totally off the mark that I stop talking to the waiter, turn to Cam and say, “Child! You have never been to Barcelona!!” Then Kait beings to laugh hysterically. So I turn to her and say, “This? You’re laughing because Cam believes she’s been to Barcelona?” And Kate goes, “Did you hear what she said? She said I have been to Barf-a-lona”.

Kid humor.

When Your Parent Acts Like a Teenager

Today would have been my parent's 42nd wedding anniversary. So, like a good daughter, I've been worried about dad all day long and how he was surviving this day. So around noon I tried to call him -- no answer on either phone. Around 2:00, same thing. Again around 4:00, and 6:00. Then around 7:30 tonight the calls began in earnest. I even went so far as to call a family friend who lives in the area to check on him. Nothing.

Snap to 9:20 tonight. I finally call my sister in tears because I can't find dad and I can only imagine bad things at this point and I am THISCLOSE to driving up there to check on him. My sister tracks him down at the bowling alley of all places (dad is a semi-pro bowler) and they both get a good laugh at my expense because of my worry.

It's so NOT FAIR that I'm at that stage in my life where I worry about my teenage daughters when they go out, but that I also worry about my 67 year old father, as well. When do I get MY freedom???

This Image Brought to You by Sonic!!

About two months Kait got her license to drive. She is a VERY cocky and over-confident driver and she knows it all -- doesn't like suggestions or ideas for improvement. So. I offered up a little friendly bet -- if she had a fender bender in the first year then she buys me a week worth of Sonic drinks. If she doesn't, then I pony up the drinks.

Cut to last Friday. I am sitting in my room around 6:00 in the morning and I hear this odd noise from outside. My first thought was, "Huh, that didn't sound good," but never dreamed it was related to me in any way and I figured if it was the girls, they'd come back in, right? No. About five minutes later the front door opens and Kels walks in carrying a license plate, complete with holder and hanging bolts. I don't recognize the plate number right off (just added a new car to our family a few months ago) and so I ask Kels, "Hey! Where'd you get that plate?" And her terminally blonde response was, "In the driveway." I know that I had a puzzled look on my face because she followed that up with, "But the good news is that no one was hurt?" By this time it had dawned on me that my teen had run over someone's car. So I ask the logical question, "Who did she hit?" To which Kelsey replied, "You."

That child had backed right down the driveway without ever looking to see if there was anything behind her and careened right into the front of my jeep. Well, I turned into the typical angry mom once I figured that everyone was okay and ranted and raved a little about being careful and always looking around you and how they needed to LISTEN to us when we give them instruction because we might just KNOW a little something that they don't because of our "seasoned" age and experience. And I knew that I was getting a little out of control, so tried to tame myself down, leaned in and gave her a hug and whispered in her ear, "I would like a Rt. 44 Diet Dr. Pepper, thank you very much!!"

Delinquency

I KNOW my posting is spotty, but life sometimes interferes. It's been a bad week here at the old casa de seizure. Kels is on a new anti-depressant and I believe she is having some interaction with it. I have put a call in to her new psychiatrist and we will see about changing or adjusting.

I am in school right now and one class that I have this semester calls for a live, oral presentation -- subject of our choice. My choice (of course!) was seizure disorder (got to talk about what you know, right?). More specifically, depression rates in patients with seizure disorder. Even though epilepsy is one of the most common neurological disorders, it is very poorly recognized. People with epilepsy, especially Kels's kind of intractable epilepsy, have a nearly 30% higher rate of depression that any other disease group, including cancer. Sometimes I believe that all the "extra" things that come with a diagnosis of seizure disorder are much, much worse than the seizures themselves.

Yesterday's meltdown was bad -- probably one of the worst I've seen in her yet. Quite frankly, it scares me. I can deal with the physical part of seizures -- I've dealt with it for years. Losing my daughter mentally is something that I don't know how to fight.