some good news, some bad

Dawson's seizures are changing.

Last week he had several days where he only had a few episodes!!! On Thursday I only saw 2 the entire day, and it was while he was sleeping. Wowzers. So great! There hasn't been a recent change in his medication either, so this change is happening on it's own. We are anxious to see where it is heading....

We even spent most of wed&thurs without the helmet. :) :) :). I thoroughly loved styling his hair again.

Then Friday was "normal" again. He had seizures again all morning and several throughout the rest of the day. I don't think I handled it very well, putting the helmet back on. I was a total grump to everybody. Then my tire blew at the car wash. I guess it was the last straw because I fell apart. Sheeeeesh. This roller coaster is draining.

The good news is, they aren't happening as often. He hasn't been doing his "head drops" either! Awesome. We don't know if it will last, but while we have this good news to share, we are grateful for it.

The bad news is that he is having longer/harder seizures when they do come. Since Saturday I have seen 4 particularly bad episodes. His sweet face looks so distorted, with his mouth open and drolling. :( Each time his right leg is completely limp and useless afterward. It takes a few minutes for him to be able to stand at all, and then about an hour of "extremely wobbly" walking, and then he finally gets back to his "normal wobbly" walk.

I am very concerned about the leg especially. He already can barely use his right hand... However, I have been reading alot about the brain lately, how it can heal etc. So i believe he will be ok. (We will find a way to make it ok). Still, it's a big worry.

I just keep wishing there was another place to take him to the doctor. We need someone who:

Cares & really Listens (doesn't assume they have the answers before they even hear the situation)

Follows through/returns phone calls (remembers us after the appointment is over)

Extremely knowledgable in epilepsy

Offers hope, but also takes this very seriously (Does NOT compare us to their other handicapped patients, treating the situation as a 'not as severe' case).

Is that expecting too much?

If we had a doctor like that, it woulf be HUGE huge. We have had so many many frustrating incidences with the doctors we see at PCMC. I am sure they are good people, and even good doctors in their specific specialty, but they are NOT good at intractable epilepsy. They are also just way, way too swamped with patients. I feel like I have to constantly battle to get any help. I have had to act like a flippin' blood hound to track down our kids' test results, or to get a doctor to call me back, etc.... It shouldn't be so hard. Don't get me wrong, I am more than happy to battle for my kids. It's just that it's hard to always be fighting, especailly when in the back of your mind you don't believe they will be able to make a difference anyway.

We just need to go somewhere else. I am looking for other options.

I have heard amazing things about some other neurologists, all of which are out of state. There is one we are especially interested in that is in Cleveland. I have been looking into heading out there. I will have to write more about that later because....it's too much. At the moment.

FP Squared

Today marks FIVE years since our journey with epilepsy began.

I don't know whether that's something to celebrate or not, but I do feel like doing significant to acknowledge the memory anyway.

I have been thinking about what I could do for it this all morning, and I have come up with an idea.

Several years ago I watched a show on tv about a woman who had a trial in her life (can't remember what the specifics were) and because of it, years later, she started some program to help people in her same situation. The part that has stuck with me are the words "I have found my purpose from my pain." How beautiful is that?

I have often wondered, "what is the point of this happening to our family?" I believe that everything does happen for a reason. There have been many times in my life where I have looked at my past and thought, "So that's why." Other times I have just found myself being grateful for trials because without them, I wouldn't have gained or learned what I needed in my life.

So there has just got to be something significant that we will get out of the last 5 years. I decided this morning to stop waiting around for realizing what the point of it all is. I am going to start a project for myself. I am calling it my Finding Purpose From Pain project or

FP Squared.

I am sure as time goes by, the reasons will show up on their own. But until they do, I am gonna start looking for them myself.

I have a few ideas. When Dawson first started wearing his helmet, I thought to myself "someday when this is over and I have the time, I am going to start a small business of designing decal for children's helmets." Putting something so bulky and ugly that covers child's head can be really hard on an entire family. Decorating it, making it fun, makes a huge difference. So maybe someday I will get around to that.

I have had a lot of other ideas about basic day to day things that would help people with epilepsy...

Or I would LOVE someday, when this is all over, to be a support to mom's in my situation now. Watch their kids so they can sleep, bring in meals, just LISTEN when it's needed.

I dunno. But at least the ideas are starting to bubble. Anything to make all of this WORTH it.

It will come.

For today's FPsquared, I don't have time for anything fancy. Instead I had an idea of something we could do to serve a friend. The kids and I will deliver that tonight after I am done teaching at 7 which will be exactly 5 years later. Nothing makes me feel better than when I do something for someone else. I want to have that feeling tonight instead of a depressed "it's been 5 years" blue.

I think that will be the best way for us to remember tonight. FP Squared :)

Our history up to date

I can't really write a lot of things on this blog without explaining a little of our history. So here is our epilepsy story- or my version of it as the mother. I will try to make it as short yet up to date as I can.

Kevin and I were high school sweethearts. We were married July 6th of 2002 and had a beautiful baby girl in September of 2003. We named her Halle RaNae. She was too good to be true. An angel baby with thick auburn hair, who slept 14 hour nights from the time we brought her home. Hands down, she was the sweetest, happiest, most beautiful baby I had ever seen. Not biased or anything :)

I remember thinking, "This is it?!? Why does everyone complain about parenthood being hard? This is heaven!"

Ah, the thoughts of the naive.

Two years went by. We built our first home in Eagle Mountain. Kevin started the load of a full time job, full time student, father and hubby. Life got a whole lot busier, but we learned how to juggle. We happily welcomed our second child, our very own handsome Drew Kimball, to our little family in September 2005. He was also an amazingly good baby and wrapped his mom around and around his tiny perfect fingers.

Drew had a rough patch the first year when he stopped growing or developing from 2-8 months. Tests were run and nothing was found. Then one day something clicked and he was better. Over the next few years he grew healthy and strong, catching up in size and development to those his age. We were so grateful and counted our many blessings. In our beautiful home and with our 2 beautiful kids, life was very full.

January 25, 2007 showed up and out of the blue our world turned upside down. Halle started having hundreds of seizures -day and night- and we struggled through loads of unanswered questions. Why? How long will this go on? Is she going to get better? What damage is this doing to her brain? What kind of life is she going to have...

Helpless.

There isn't another word that explains it so well. We helplessly watched as first the seizures, and then the drugs transformed our precious little girl. Six medications later she was still having seizures. She was also sick. Angry. Confused. Traumatized. We had to put her back in diapers. Tics, sometimes several at the same time, began and added to the surreal situation. She became terrified, panicking about things we couldn't understand. Simple things, like getting her in a car seat or getting her dressed became daily battles, often ending with both of us in tears.

Time at the hospital, counting and clocking seizures, afraid to turn my head for a moment became normal. I deeply grieved for my little girl, and her life before she got sick. I missed just playing with her. Enjoying motherhood with her. I felt lost.

I remember looking over one day and seeing my patient baby Drew, realizing I couldn't remember when I'd last had a moment to think about him. I felt like the wind had been knocked out of me. I missed my little boy. Later, during a stay with Halle in the hospital, Kevin's family brought Drew to visit us. When I had left him there he was a baby but when they brought him to me he was walking. I had missed it. Nothing was ever going to make it okay. It was an excruciating time for our little family.

After several months a miracle happened. Our ward family held a special fast for Halle to get well. We have not seen her have a single seizure since that Easter Sunday. The sweetness of that tender mercy from our Heavenly Father leaves me indescribably raw and emotional even now, almost 5 years later. Why we were so blessed, I do not know. I only know it happened.

Life did not just pick up right away, though maybe it could have if I hadn't been so shaken. The fear of it returning, or of it happening to Drew plagued me. I was haunted by memories of the seizures. The look in her eyes as her body seized, the times she got hurt from me not being fast enough to catch her .... Etc. I learned a lot over the next difficult time of my emotional recovery. A lot about faith. Living in the present. Eternal perspective. Definatly a whole lot about myself- good and bad.

We ended up moving to Provo. We needed to be closer to Kevin's work and school. I needed a restart in my life.

Everything changed again in March 2010 when our sweet Dawson Riley born. He was perfect, and the spitting image of Kevin. It was love at first sight for all of us and we couldn't get enough of our new little man. The next several months were tricky however, trying to adjust to having our hands even fuller than before. Kevin continued (and still continues) to be the most dedicated father, employee, and student I know. Leaving first thing in the morning, getting home after midnight each night, helping me catchup at home every weekend, spending every spare minute he has with his kids...year after year. Breaks are too short and rare, stress is way too high, but he just keeps going. I love that man.

November 2010 was the start of another nightmare. Dawson, 8 months old, started seizing every day. Less than 2 weeks later, while recording Dawson's episodes for the doctor, I saw Drew have his first seizure. Since I have written a lot of that experience here in my other blog, all I will say now is the next few months were indescribable.

Drew's seizures were under control with medicine after about 2 months. Two horrible, horrible months. Afterward I was left a different person. The adrenaline that got me through the days wore off. I was left spiritually, socially, emotionally, financially, and physically exhausted. After a few months of severe depression, I decided to focus my life on finding a new normal normal. And that is what I am still trying to find.

Today:

Halle is still SEIZURE FREE! She has struggled with migraines and tics ever since but we are very, very grateful for the miracle she is. This last December she had a follow up EEG which was "normal for her age". What a wonderful blessing for her, and our entire family.

Drew had only one seizure since- in November 2011. It was a different type of seizure than we have seen. He went from being awake to a sleep-walking-awake where he could communicate but didn't know how to do basic things. His eyes had that seizure-glaze, and he didn't know where the bathroom was, how to wash his hands, etc and kept turning in confused circles. After about 5 minutes of this, he "woke up" with NO memory of anything that happened. His kindergarten teacher called me the next day and said he had seemed different at school, was distracted and tapping his chair etc... So We were extra nervous for a while but nothing else happened.

Drew also had an EEG last month. Unfortunately his news wasn't as good as we were expecting. I guess that it showed just as much abnormal activity as his last EEG- which was done in December 2010 when he was having a clusters of 4-8 seizures about every 1 1/2 hours. Very, very discouraging. He also had an MRI, but I have not heard back from his results. His next appointment is February 21 and we will learn more details of both tests then.

Dawson has not yet had a single seizure free day since his started. He is currently trying a third medication. When we change Meds or up a dose, it seems to help or change the seizures intensity for a little while, and then they start building again. Because of his age when it started, and this being the age of so much brain development, it is a huge concern.

The seizures are always changing. Sometimes he has good day where he only has 5 or so. Other times he'll have several episodes an hour. They range in length and strength as well. He also has after-seizure drops (usually around 5). These can be as mild as a nod and slow blink, to fully slamming him to the ground. It is so, so, so heartbreaking to watch.

In June, Dawson stopped being able to use his right hand normally. We stayed in the hospital in August for a 72 hour video monitored EEG. This was so hard because he could not understand, and could not get off the bed... It was a long couple days. He also had an MRI and they found a lesion in his right lobe. Unfortunately, this hasn't given us any answers. Only a whole new load of unanswered questions.

In October he got a protective helmet to prevent TBI (traumatic brain injury) from the constant falls on his head. This has been a huge blessing for us. I am sure I have heard his sweet head crack on floors, the table, the shopping cart, corners of furniture, the stairs etc, thousands of times by now. I can't describe how big of a difference my life is with that helmet. I can turn my head for a moment, and be more than an army's length away, without worrying I won't get there fast enough. I terribly miss his look without that bulky helmet. His handsome hair and head is hard for me to cover. Obviously I know that doesn't really matter... But it has still been hard for me.

Toward the end of November, Dawson started to walk differently. He seems to drag his right side differently than the other. He is much clumsier than before. Sometimes I think he looks like he has only been walking a month or so. It makes me sick to see him going backward. It's such a helpless and horrible feeling.

Then, just last week after he had an episode, he couldn't open his right eyelid. It only lasted maybe 30 seconds and I haven't seen it since, but of course it leaves me asking...what is coming next?!? How is this going to end?????

So, here we are. Hopefully that covers enough so the things I write on this blog make sense. Whew. It sure does feel good to write again.

G'night for now :)

Fighting

I have fought so darn hard not to let this epilepsy take over our lives, trying to keep our days as regular as possible. I think, or hope, that for the most part, I have done an ok job at it. There has def been times where i wanted to quit things....teaching piano, the kids' extra activities, taking them to the school we love ...there are definitely days where the last thing i want to do is keep up with "normal", let alone all the extras that constantly keep me in a flurry. Somedays I have to let myself take time off to grieve- like right now as I sit here and vent. There have also been things i have definatly let go. But overall, I have done my very best to give my kids the same life as I would have given them had I never seen a blasted seizure.

I don't ever want to be the type of person who milks a situation to get as much possible drama and attention as possible. Or use trials as an excuse to get out ot anything. I have been too close to too many people who do that.

It is my very worst of pet peeves.

For this reason I feel like I am being sooo ANnOyInG when i talk about our situation. Only a few people have ever given me a reason to feel this way- I admit it's 99% my own insecurity. I can't help it. I have had so many people in my life i can't believe, how can I expect people to be able to trust me? I say something and then think people are inwardly rolling there eyes at me... "Oh, this again? What a drama queen. get over it already....." even though I know most people probably wouldn't think those things, I still feel it.

I have become touchy and insecure in so many more ways than at I ever had any idea I could be. This is just one of them.

Over time, and especially lately, it has gotten harder and harder to NOT Bring it up. So i feel pretty obnoxious a lot if the time. I hate it. It's just that it is SUCH a constant part of every part in our life. Day and night. I wish I could explain just how automatically my brain has been trained to think "seizure..seizure...seizure...". It is like having a never ending song in my head. I try with everything to get it out, but 2 seconds later I am right back to humming the tune.

While I am here at home my thoughts go:

Where is Dawson? What was that crash? He is going to hit his head on the corner if he plays there. If I stay and fold the laundry here, will I be able to get to him fast enough? Is he walking like that because of his Meds? Is he going to walk normal again? Is he on the stairs? What could he play with that would keep him safe while I start dinner? Is that a side effect or is it normal? Where is he now? Was that his head that made that crash? Yep, here's a seizure. I am so glad he had his helmet on...how long is this seizure going to go? Breathe, Daws, c'mon, take a breath. Can he hear me if I talk him through it? Ok, it is over. Wait, is it over? Is he ready to walk? Where is he going? I wish he would use that hand. Is physical therapy going to bring it back? Is he going to be ok? What was that? Please stop climbing on the table Daws. Ugh, one of these times he is going to . ...can't think about it...How long has it been since his last seizure? Why can't I hear him anymore? What kind of damage is this going to have long term??? Don't think about it....where is he now? Is he having a seizure??

I want the thoughts to stop. Heaven knows I try. At least it's only Dawson now. When Drew was going too...? I really don't understand how we got through it.

I think I make myself function on the outside pretty normally but my thoughts just go and go. It makes me feel like a crazy person.

Sometimes I get so annoyed with myself and get so tired of it being a part of every minute of our day:

I get ready to go to the store and it takes 10x longer than it should have. In frustration i think .... ehhh! If only I could just get ready without having to keep one eye glued for seizure alert, maybe I could get out of here!! I am so tired of not being able to focus on anything for more than 2 seconds.

At the store I see another mom out shopping with her toddler and admire his hair. Here comes the greif again .... I wish I could style Daws's hair. I miss showing off his sweet blonde Mohawk. I wish he didn't have to be hidden by this huge helmet.

Through the store I get through the comments of the other customers. Kids pointing, "why is he wearing that?", someone else comes over and rubs it, sticks his finger in the holes, making Dawson scream. A man strikes up a conversation, someone he knew had seizures too..."keep your chin up, everything will be fine"... Don't tell me it's gonna be fine. I DO keep my chin up! How do you think I get out of bed in the morning?? He doesn't understand. he means well, shake it off Mari....

Next I watch a disabled store worker thinking... What kind of life are MY kids going to have? Will they be able to be who they want to be?

I check out at the register just as a seizure hits. As usual no one notices what's going on but me. The cashier looks at me impatiently as I hold Dawson with one arm and dig for my wallet with the other. Should I say he is having a seizure? Will they make a scene? I don't want to have to explain and start that conversation again. How long is this one going to go? I just want to disappear. Why did I try to go out?? It's hard enough staying at home.

I walk to the car and remember the time Drew seized here, the time Halle seized there. I drive back home, listening to Dawson seize in the back seat, and the familiar helplessness creeps in.

More memories replay.

Here comes the frustration at the doctors for not helping more.

The anger at the disorder itself for doing this to my innocent babies.

The loneliness and grief for how my life was supposed to be.

The anger at myself for not knowing how to do more ...

It's been so long going. Between the traumatic memories of 1,000's of episodes, the high-alert-state of the present, and the crushing fear of the future, the thoughts are always in, around and through it all. Fighting to stay in the present, reminding myself over and over to take one day at a time...that's how I survive. I know I have to let go of the past, have faith in the future... But that can be tricky when the present is such a constant, constant, constant, reminder....reminder...reminder...

It is such an inward battle:

Reminder.

I can do hard things

Reminder.

One day at a time.

Reminder.

I can be happy

Reminder.

Count the blessings.

Reminder.

Keep smiling.

Reminder...

Bleh.

i am just so tired of fighting.

maybe i really have gone crazy.