As soon as things get Better

Perfection isn't just for uptight 6th grade students in cardigans. (although I was one of them sitting right alongside my bestie.) When life-war rages all around you, Perfection becomes a living breathing planet that you are desperately trying to pack for, can't find your toothbrush for, can't figure out the weather for...

You just don't really have a concept for it, but you KNOW that once you get there, it's going to be much "Better" because you will have wiped all these crazy problems from your life and there's this hammock or a bed or a beach towel and you can lay there and it's just...ah...better.

And you talk about it with your family when you make plans. You speak about it like this non-existent place exists.

Yeah, I'll book those tickets as soon as things get better. I'll call her when things slow down and things get better.  We will be happier as soon as we can take a breath and just enjoy things, you know, when they are better?

So you know that there's no real punchline. There isn't a better.

I've been waiting on medication for I don't know how long now.. The insurance just won't approve it. So, I'm not feeling any better. We've been waiting on some other news and waiting and waiting, thinking, hoping and praying that this news should determine our direction. It should point us towards Better. But no answers.

This past Sunday was odd, not just because we were waiting desperately for HBO GOT, Silicon Valley and VEEP to come on. Before that, we spent some time outside as a family. It was really nice. Kiddo played in the grass and rubbed mud (hopefully not dog poop) all over his face. Randy looked peaceful - between full time work, full time school and his share of issues, looking peaceful is rare. But he had a moment. And the dog was making the kid laugh and the sun fell between the trees and I just watched above as the simple dance of those two trees transported me for a moment to Better. It was a quick visit, but it was nice - it was a very spiritual/star trek moment.  But like all good things, I got a text from Walgreens politely reminding me that I would NOT be receiving my medicine. Thanks

The good feeling didn't fade so quickly this time, I didn't let it. Randy had the day off today and even though nothing changed, we spent a lot of time talking on a walk. I'm so used to saying to him, "I just want you to be happy. I just want things to get better so life can start to get better."  But I stopped myself.

I said, "What if this is better? Are you happy? I mean we've been through an awful lot in the early years of marriage. We didn't lose our house, we keep finding our way back to each other. And we have the most amazingly hilarious 2 year old. He's happy and fun, and we love our family time."

Randy, like he always does, just said, "Yeah, well I try to be happy." He wasn't matching my intensity or this passion, this moment of awe.  I think he'd call this feeling "drama" "anxiety" "overthinking" but that's okay.  Back to my point...

My point is that things are going to get bad. They are also going to be awesome! It's important to grieve but it's so important not to miss that they can be going on at the same exact time. You could be missing your Better because you're focused on your worst.

It's not weak to wish for better things to happen or to want better lives with less issues and better health. I think it's just important to accept where you are and make the most of it.

I have a tendency to let life point me in a direction, lose sight that I have the choice not the other way around. Perfection does not have to be my destination I know that I can live in the moment. It's a daily struggle for me and easy to give in to self pity and let life lead me instead of the other way around. I wasn't always like this, especially when I was young. I meed to look back. You see it's that 6th grade girl in the cardigan I need to remember.  She's the one reading the choose your own adventure books! Too bad they didn't sink in!

It's as plain as the dinosaur on your floor...

Miss me?

It's been a really long time since I've written. Well, that's the first thing I'll admit to, it's been a really long time since I've shared anything I've written. Maybe that's because I felt I couldn't be honest, but if you care at all, and some of you said you've been reading, hey, here I am.

Do you ever feel like you're hiding from something that everyone else knows about? Like it's a big giant secret to you, but it's a really obvious fact to everyone else and it's no big deal and no one cares and it's just part of you and yada yada yada I could go on and on, and everyone has probably felt that way?

What is insecurity Alex?  Emotions all people feel for 500 please...

I never realized how much a home is a representation of the people who live there...okay duh again. Today I found myself heavy with fatigue again. (I'll update on my health, but I'm not feeling it today)

When I find myself fatigued lately, I decide that it's important to start working on serious projects until I completely exhaust myself, projects I would otherwise delay if I were feeling better and would take Brock to the park, the gym (because we both love it there) or somewhere with kid fun. Does anyone else do this? Push yourself at the worst times?  I'll even do more chores when I'm sick. Tough on myself?

What are things parents do Alex?  Ways parents are tough on themselves for 1000 please...

Ok, enough Jeopardy references, sorry, you love the Trebek and you know it. So, there have been two instances in the last week that made me realize I've been hiding from 2 very simple facts that have probably been obvious to everyone else for a long time.

Ok are you ready for the admission?  It could be shocking for you (probably not)...  And, I'm not going to explain myself, how I got to this point, or where it came from. I'm simply going to state it...Are you sure you're ready?

Deep breath...

Whooo...

Ok...

I AM...A...STAY AT HOME PARENT.  Oh my gosh, I just said it.

I take care of my child, and guess what.  I HAVE A CHILD THAT LIVES IN MY HOME, and...

Ok...

Here goes...

MY HOUSE HAS TOYS IN IT!!!!!!

I'm not sure if any of you knew this, I've sort of left you clues, pictures, some other blogs about taking care of him. And there's that small fact that I am not employed right now (shhh disabled). You've probably put the puzzle together. But do you know that this past week is the first time I've ever said it without an explanation? And I was PRAISED for it?  I've always felt ashamed that I got sick and couldn't work. I always thought I was free-loading and putting my skills to waste. And I ran into my 7th grade English teacher, she said "What are you up to?" it flew right out of my mouth without any explanation. She said, "How wonderful, your son is so lucky to have such a smart mom home with him, it must be why he is so smart."

Huh?

I mean it's okay for everyone else who has made that decision, but, you see, I didn't really "make this choice" - so I felt like I could never take any credit. But for some reason, I guess the timer went off and I let myself take the credit. And you know, when she said this to me it felt WONDERFUL!

So, explanation or not, I'm a stay at home mom. I'm glad we finally got that clear.

Also, when our basement flooded I realized that I've been hiding the fact that there's a child in my home. I know...you're shocked!!!

You're surprised because: 1. I hate things to be untidy. 2. I've been so sick that it's been difficult to keep things straight so I put things in bins. 2. If you can't keep it clean, hide the mess.

Plus, if I keep enough things hidden when people visit, maybe no one would realize that I'm at home with a child, they might think I'm working, or forget that I work at home, right, because that's the way we really say it, right parents?

Never mind that there is in fact a child there! And we even play with him. But his belongings were previously kept to the basement and his room like a room for rent guest.

But once we had to move his stuff upstairs, it became REAL everywhere I looked that Brock lived everywhere in the house. He pretty much had access to everything now. He's here just as much as I am, right?

He real and he's large (seriously for a 2 year old he is), in charge, he's fast and he's dangerous (Brock smash!). And with that, there's this other piece, he's excited about everything. He cheers at letters, numbers, trees, and friends he knows. He's generous with love, he has likes and dislikes. He loves dogs and torturing our dog and loves bananas. He hugs and kisses both Grandmas and makes pizza disappear. He runs to Daddy when he comes home.  He randomly jumps in our laps, loves books (so much that he throws them in our faces when he wants us to read them, it hurts as much as it sounds.)

Sorry...

What is my child is a real person and has things in our house - and other people can see them?  Things I can't control anymore for 100 Alex.

Sometimes I think it's the simple truths. The truths we were handed or those things we think we have control over.(which is almost nothing) It's so hard to enjoy the ride sometimes, it seems like life is just so hard especially when everything else seems out of control. But every road block you're able to move out of the way, every letter learned, every fault recognized, every color understood, everything becomes so much more revealing. Life becomes new and the learning never ends.

So my confession is real, and I don't really care about any credit or criticism at this point. Brock and I keep learning, only our flashcards look a little different, but I try to act excited about the letters, trees and especially the dinosaurs :)

My son in the cemetery

 

There's a really weird thing about kids and time. Even if you don't have kids, they have a way of reminding you "It's been 3 years? She's going to be 3?" And they have this constant reminder about mortality. Thanks Brock. You see, there's this thing called responsibility and all your stupid choices have to revolve around them. You can just blow all your money on scratch off tickets and sit your own pile of glorious scratch off dust. Who's addicted?


No, kids remind you that you're going to die. They remind you that other people have died. You hurry up and get them in pictures so that they can be in pictures with people before they die (even though they will never remember this) because you want them to be in said picture before that person dies.

Plus, will they take care of you? What will happen when you die? Will they die before you? OH MY GOD? See --- mortality.

Now I'm prefacing this like I am above all of this, which is a big ole load of crap. My 100 year old grandmother recently died and you better believe we have several pictures with all of us.

But something really touching happened yesterday and in a world where so much goes wrong, I just thought I'd tell you about this sweet little moment with my sweet little boy.

My mom had to stop by the cemetery where my grandmother was recently buried, I hadn't been there since she had been buried. I've been so many other times because it's the same spot where my brother Teddy was buried. At first I was planned to wait in the car. If you have a toddler you really hate to wrangle them in and wrangle them out. But then I remembered all of the beautiful butterflies flew around the cemetery and I knew he'd like that, so I pulled Brock out of the car and started to walk around.

It was the oddest sensation of my life. Watching my kid stand on graves that he would one day put me in and he would one day be in (unless, of course science has found the cure for life).  Brock just stood there and he just smiled. He ran about like little boys do, touching to vases and some of the nick knacks people lovingly left on graves - don't worry he didn't break anything. And then it dawned on me that I might as well show him where his family is buried.

It as a haul but I carried him (and a few bug bites-as big as butterflies the real ones must have migrated) and we found the spot where our family lay to rest. I introduced him to everyone. I told him who they were. I saved my brother for last.

Before I could start the introduction Brock fell to his knees at my brother's gravesite and started to feel the letters on his head stone. I instantly started to cry. He is not a still boy, but he sat there (for a second).  After then he got up and started collecting his favorite things leaves and rocks. He left a stick in the vase for my Aunt Barbara (not sure why the stick). But his favorite things that he kept walking around with were these soft light brown leaves. He carefully laid one on my brother's headstone.

Now, I was obviously a wreck and kids just do weird stuff. And, honestly I'm going though a difficult time right now in my life, so I'd like to think that there was something, even if he sensed how important my brother was to me. It was a good moment.

I'm not ashamed to say, I followed up our visit, tear stained face and all with the best southern comfort bbq there is - Bessengers.

Hebrews 6:19 and 2 Cor 12:9

You don't own anything

Recently, let me say, very recently we were the lucky parents of beautiful new blue weimaraner. We named him Coal. We were instantly in love.There was one problem with Coal, he was a puppy. The fact that he was a puppy was in no way his fault. But I'm still recovering, I have a 20 month baby old, another dog and husband that works very full time. I also have an interview for a very promising job coming up - but more on that later.

Well, that's the setup to my tears and screaming. My husband knew that Coal had become too much work and decided he had to go. Let me make this abundantly clear - I was not ready to say goodbye. And I have never felt a pain like this knowing that Coal was somewhere out in the world with someone else's family, that he would very easily forget me. So I struggled to find some sort of lesson from this mess.


I never owned Coal. In fact, I don't own my husband or my child. I don't own the words I'm typing or the coffee cup I drink from. You could argue that the words are mine, but who is going to cross check some chicks blog?

Several years ago my brother died. I won't go into the details because this is not what this is about. I'll save that whole story for another day. When he died we were obviously devastated. We picked out the coffin (awful by the way, my advice is go cheap no one ever sees it again) We picked out the flowers, and where we wanted people to send money to in lieu of flowers (which no one listens to anyway). You pick your music and verses and you are thrilled to have a woman priest because your brother was gay and it's just sort of a last jab, And if you're a sister like me, you do the eulogy.

All of that is nice, but your brother is gone and you realize you never really had him anyway. He was kind of on loan. And I think back to every moment, thinking what if I knew that? What if I knew that he was simply on loan for a short period of time? Would it change our relationship?

And that's just the people. So many people like stuff. My brother liked stuff. (Car, furniture, decor) Let me tell you getting all of his stuff to our home was quite a challenge. God bless my brothers on their journey because I could never-ever have been able to do that.

The thing is once we got all of his stuff that we couldn't donate we had huge piles of stuff in our home. I quickly became a"do you want that?" "could you use that?" IT even hurt some feelings. But is was all suff. We sadly and emotionally divided my brother's possessions knowing full well that the memories would never be replayed or replaced. It was one of the most difficult days of my life because I realized that none of the things were really "his" they were just things that would remind us of him.

My 100 year of grandmother passed away very recently. And I have to be honest, if someone broke into her house they would turn right around any run right back out that door! She had so much stuff (I think she was the inspiration for the TV show "Hoarders" she just had 9 kids and so many grandchildren you couldn't count to keep her in check.  As far as all of her "stuff" went you couldn't figure out what you were looking at, Everyone called her Queen Bee, because even though a lot of the things she bought were Kmart specials and Christmas gifts with no tags from 1973, those were her treasures. And boy did she sit on her throne. She may have been ordering from QVC, but that's her right, I mean she lived to be 100! Don't hate. But once she passed on those things were divided up and all of her belongings gone. (Well it's in progress). Sad as it sounds it became mounds and mounds of stuff.

I try to treasure the people in my life as I can, I'm not great at it. And I  definitely do not think of my elders as much as I should. But it's not just the elders, it's your friends you see everyday and cherish and call just to complain. They very well could be the one you'll find out in a month has cancer, or a brain tumor, a heart problem, or is suffering from deep and dark suicide. None of us truly know.

As heart breaking as losing my Grandmother recently, my brother, and Coal's short visit, it's a reminder to treasure the short time we have with one another. There's a mysterious ticking clock running out between everyone of us. We have no idea how much time we have with each other. And we can choose to live in fear or make the most of it and treat it as a blessing.

I look at my son and I pray for him each night that he would grow to be happy and healthy. And selfishly I wish that I would be there to see it. And one day (in a blink of an eye) he will leave me for a partner of his own because I don't own him. Because God just gave me the privilege of raising/renting him for awhile and every moment is precious. And what an honor.

Waste No Time

A year seems like a long time.  I've lived 35 of them...and some change.  And some years had a bigger impact than others. This last one has been a crazy one.

I think about past summer's that I slept through. Probably sucked in a bunch of radon from a Cincinnati basement (who knew back then) eating Coco Pebbles for lunch, well because it was 11am, turning on the TV and being blinded by the light streaming in from the window wells.  There were Schwan creamsicles in the fridge and the sun came up and went down and the days wasted away. Some days my parents were frustrated with my lack of interest in, well, anything. And I'd think, maybe I should do, something, maybe I should find a way to help others or well "be better" or more active. But then I'd get tired and take a nap.

I'd lie if this didn't happen a few times, like a couple of years. I mean school wasn't exactly difficult and life was pretty easy. I loved soccer, I had friends, it's all sort of a big mind gloop of easy. And I'd sit in the backyard on my swing-set and dream of getting older and all the "fun" of growing up. Thinking about being old (like 26) probably have a few kids by then. I'd probably drive a convertible, be an executive with a car phone, have 2 weimaraners (Lucy and Ethel). Beyond that superficiality, you'll be proud to know that I thought about a little bit more. I imagined holidays and laughter, a life full of love, family and friends, (the fantasy would continue.)

And most of us don't get the exact swing-set dream.  Life doesn't play like the movie in our 9 year old minds. Life finds a way to reroute our plans, we move off course.  And it's proven how little control we have, that our dreams have value but - they are just dreams. 

Each time life has a detour, we have a choice. We can fight and get angry that we didn't get to go on the original path or we can look around and see the sights and enjoy the images of the detour and try to appreciate it for what it is and where it sends you.

Recently, my mom and I went to Atlanta to visit my brother for a short trip. We expected the GPS to send us on a direct trip through the major expressways and get us there directly.  Unfortunately, the GPS got mixed up and sent us on a wild ride through all of the back towns and twisted roads and old farms and Americana that is South Carolina. Honestly, I was so frustrated, I kept yelling..loudly, "Where are we?" (I'm a great mom). It was going to take forever to get there. I couldn't control the car, I couldn't navigate, I couldn't see what was coming around each corner. I was so used to the straight path of the expressway. I wanted to go faster, and this route forced me to get passed by every car.  It also gave me the opportunity to see the vast landscape and the towns that have thrived and those that died. There are some beautiful sites there. But, I was terrified, it took awhile and I was tense all of the way to the expressway because I had to navigate through every turn.  Even with some of the beauty, I swore there was no way I would take that route on the way back, there was no way I wanted to be detoured in the dark, it would slow me down again AND I would be scared!

Well, I didn't take that route on the way back, I ended up with a much more twisty, much more complicated route. My mom was actually joking with me! Before it got dark though, there was a beautiful sunset that happened right over the scenery, and I'm sure we would have missed it if we hadn't gone on this detour mishap. But make no mistake, I was freaking out and terrified.

I think that detour helped me think about this last year and my struggle with epilepsy and all of the aftermath. It was awful, unexpected and terrifying. It wasn't the only detour, but it was, in fact, one of the scariest moments yet. It doesn't mean there haven't been my own "sunsets." It doesn't mean I haven't been taught something from this year, that I haven't been able to see things in others, in myself, about life because things slowed down. People surprised me in ways I never expected. And it doesn't mean I wasn't angry, sad and disappointed.

Now, I've had a little distance with those years I've wasted, I'm really grateful that I had them to "waste." I'm really happy that I took some time to rest and dream. Adult life is hard. I'd like to think I was resting up and gearing up for some of these crazy adventures I'd face, like, somehow concession stand pool pizza and ice cream truck red white and blue popsicles could have been my power foods like a mushroom is to Mario.. (This could totally be seen as an excuse, but I'm still saying it.)

Imaging the drive in S.C. and the scary detour, the winding roads and my mom taunting me from the passenger seat telling me "this is how every horror movie begins" as the roads went completely dark and it started to rain. Now the fear becomes a laugh and joke, and years from now we will tell the story to Brock and delight him in the drama that he was too little to understand from the backseat of the car.

A year after one of the toughest times for me, I can tell you it's not laughable, I'm not ready to do again, It's tough to think about. Not being able to function, multiple seizures a day, struggling, all of it. It's taught me something. It taught me that the swing-set dream (although the numbers were pretty far off) the rest of it was pretty accurate. I dreamt of a life full of love, family and friends.  And over the last year it's been proven to me over and over again that's exactly what I have.  The frustration of letting go, taking it in and letting life be what it is, an experience, a moment. None of it is wasted because it's an experience and I've realized that I have the choice to let go and and enjoy the moment or fight and and be angry. Letting go of the anger has been the greatest gift once I've found some strength to try it. Some days are easier than others, sometimes something in life jumps up and reminds me of the pain. There's loss and struggle and so much to think about. But there is so much to be grateful for...so much to be proud of and so much to continue to grow from. And no matter what happens each and every day there's a sunset.

The Kindness Ding-Dong-Ditch

I changed the name of my blog and the description because it didn't really match my experience. It's not just about healing. I think it's all about accepting the constant change, or the temporary new normal, growing and learning, then getting ready for the next phase.

I'm not a very serious person, but I have serious thoughts.  I think way, way, too much. So much, in fact, that it can send me into spiral after spiral of anxiety and worry and scenarios and possibilities.  In other words, if you think I'm a "go with the flow" type of girl, I've got you fooled pretty darn well.

There's this thing about people who are chronic "over-thinkers" (this is just my opinion, I have no research to back any of this crap up, just human observation) but I think it's because we think we have influence and control over the outcome. So, we run through scenarios about what we think we CAN control that can influence the outcome. I've sort of run through this before, it's why I'm an awful backseat driver.

But recently, I was in therapy (I still think ick to that every time I type it - just for me - not for anyone else) and my therapist was listening (very lucratively) to me drone on and on about scenario after scenario.  He told me to stop a minute.

He said, "You're a very smart person, and from what I know of you so far you seem to make really good decisions and choices. You react well to your environment and you can handle things that come your way,  What would it like look like if you detached yourself from the outcomes?"

DETACHED MYSELF FROM THE OUTCOMES????

I was mad at first, it was like a reflex, because that means that all the time I spent preparing and worrying and planning and setting things up would be pointless.  And my brain eased into his suggestion and I felt good, like after a massage good.  What would it look like?  Better yet, what would it feel like?

How would I fill all of that time? LOL? How would I relieve stress?  I mean the most effective way I dealt with stress was to OVER PREPARE for outcomes.  Then I would relax(ish). And the more stress the more over-preparing.

I've been thinking about that -meditating - praying about it for a while now. And then I found my favorite stress reliever.

Before I get into that, let me say that I am not that great at detaching from outcomes I struggle daily...I am really really really working on it. We took our son to our friend's house a while back and there's a lake there.  I dressed my son, in goggles, water shoes, a life jacket - the works.  He could barely walk in 1 feet of water. LOL. It was so me. I took almost everything off and the situation drastically improved. I was over-planned and definitely over-parenting.

Recently, we've gotten a new puppy, I won't even get into how stressful that's been. Anyone whose ever had a puppy can relate. If you have ever had a puppy and a baby at the same time and want to cry with me, feel free to give me a call.

My initial reaction was to over-plan, over-train, set crazy expectations. Everyone should get along, get on a schedule - make life easy, perfect outcomes! It won't be easy, but as long as I stay ahead of the situation and put my typical perfection plan in place all will be okay ---- lies ALL LIES!!

You see, even though we had a new puppy, the other dog decided to throw up everywhere for 3 days, in-between pillows, all over, including on me!  The baby got sick, a terrible sinus infection. Randy and I were up every few hours letting the pup out to go to the bathroom, so we were exhausted, and then we both got sick.  Oh yeah, and I have epilepsy so I've been adjusting to a new medication dosage that's zapped my energy and made me sick. In other words, no way to control this outcome.

So, when I could finally get it together and buy enough resolve to cover all of the throw up and pee stains on the carpet, I got the baby in the car and escaped to take him to the park. And that's when I figured out what really makes me feel better.

(I preface this next part with a sincere request that I am not looking for any praise or credit, it's just what makes me feel better. I'm not trying to look "holier-than-thou" or better than anyone else. If you think it's something that helps you, by all means go for it, if it's not your thing, no judgement here.)

So, when I could barely pick up my head and I was thinking about how I was barely going to get through the day, I pulled into Starbucks. I remembered that last Christmas, it was kind of a "thing" to buy the drink of the order behind you. So, I did it. And I giggled pulling away from the drive thru.  And then I did it somewhere else, once again, giggling and thinking about the look on his/her face laughing to myself and wondering how far that little act of kindness might go. I'd have my husband pay the bill and secretly leave extra cash tips on the table when we went out to eat. And I'd smile to myself.  The thing is, it started to distract me from how frustrated and sick I was...

There's another act of kindness that's really fun, but almost impossible to escape. You see, I don't have a lot of opportunities to schedule hair cuts so when I get a moment I usually go to the quick convenience places, where you don't have to wait very long. I find that people who work there are really kind, they like to talk, and generally work really hard. I always tip them 100% of the bill. I know it seems that most of these are about money but they don't have to be.

Then I went to the park with my son.  We were there about a half hour when a woman was running around frantically. No one else seemed to care. I walked over to her and asked her if she needed help.  She said her son was missing. Brock and I stopped what we were doing, I picked him up and instantly began searching after she described what he was wearing.  Luckily, I found him in a tree.  I tried to escape before the mom could thank me, but we didn't get away.  She was extremely grateful and looked at me awkwardly for stopping to help.  I told her I couldn't imagine how terrifying that would be.

More and more opportunities started coming my way in random places. People who just needed to talk about a raccoon in their attic, a daughter undergoing surgery, a man who's son who happens to have autism and became a star on his varsity basketball team, a woman who gave up a high-powered career to stay home with her kids after her husband died of cancer. A new parent. Listening to them was the kindness they needed. It seemed so random, it never happened so often before. Sometimes at the end of our conversations it was odd, almost like I should get a phone number, or stay in touch, but the moment wasn't about that, it was about a brief moment of kindness. And we parted ways...



It's like a kindness ding-dong-ditch.

Becoming a GREMLIN!!

If it seems like all I did as a kid is eat cereal in a basement in Ohio (get it together LeBron!) during my summer breaks and watch 80s movies over and over so that they have crept so deeply into my psyche that I can't relate this struggle to anything else...


Well...you'd be close.  I also ate a lot of "Schwan - man" french toast sticks and personal pan pizzas that we microwaved frequently as well.  You gotta have lunch when you wake up at noon. Even if the pepperoni is square and everything tastes like salt.

So, this movie right?  There's this thing called a mogwai, and the one from the movies (because the first was so great they had to make more) is called Gizmo. Now, the owner of Gizmo has several rules he must follow in order for Gizmo not to become a gremlin. At the beginning of the story we don't really know what that is, and frankly we just know the rules and in case you don't remember, here they are:

• Never expose it to bright light (it will kill it)
• Never let it touch water (it will multiply)
• Never (ever...we are warned) feed it after midnight. (this is how we get gremlins)

Other than a love for a classic tale of an irresponsible inventor, his son, and a cute mogwai, the story has some personal significance.

Several months back, (like last August), so almost a year back, I started to notice that several things started to make my seizures worse.

•  Sounds (loud noises, low frequencies, high pitched repetitive noises, multiple conversations happening at the same time)
• Stress
• Lack of sleep
• Bright lights
• Foods, (there's a long list her so bare with me: sugar, foods with preservatives, artificial colors, wheat, sugar substitutes...basically fake foods in any format)

A lot of people are curious about the food thing - not sure why, but they like to ask and sometimes challenge the specific diet changes I  made while I was figuring out triggers. Sometimes people criticized, people thought I was doing it to lose weight (like that was a big concern) but whatever. The food part became the biggest "tell" for a seizure. If I ate something that was "fake enough" to cause a problem my feet would tingle.  And it didn't take long.  I would normally just stop eating the food, that was usually enough to stop the issue.  At first I didn't know what was happening and ate through the tingle which led to a seizure at restaurants. Plus, during the first couple of months one of my meds took away my desire to eat, which also didn't help the weight loss, so the result was a lot of weight loss really fast.

It's funny... I've been on meds before that which made me gain weight. When I told people that I'm on meds that had this side effect people had so much sympathy due to the lack of control, they'd say things like "I'm sorry, you know it's not your fault, I hope that things normalize for you soon."  But telling people I've lost weight and it's kind of scary because it happened fast and it was out of my control, well, there's no sympathy, as a matter of fact, people act like you're annoying...like oh, poor you, you've lost weight, BIG PROBLEM.  We have so many double standards as humans.

(Sometimes - that's called getting sick.)

But I won't deny that being healthy and getting to a weight that works for me is a focus in my life now, mainly because being healthy helps with my stress level and my sleep, and really my overall health. It helps with my disorder. I'm not perfect at it, but I try.

The nice thing is that when the medicines leveled out they helped make most of these rules less important. I mean, I can eat some things that aren't pure and not get into any trouble.  (Health nuts are shaking their heads) LOL.  Moderation right?  But, I just want to live a normal life and make healthy choices for myself because I want to not because I am following a list of rules that where I "have to."

But if you've read my last blog, you know that my meds haven't been working 100% and last weekend at a friend's lake house I had a seizure. That's the return of 2 seizures. I had a blood test the last couple of weeks and my levels are all low. This is not good news.  What's been different?

I haven't been following all of the rules.

Hang head.

Mostly...foods.  I delighted in a little ice cream. Then I tried a little more.  After I had the first seizure I was so mad and so convinced that nothing was working anyway I just threw caution to the wind and decided I was going to go on a bender!  I ate chocolate and smores, and a whole bunch of fun stuff.

IT WAS GLORIOUS!!!!  Breaking the rules was so much fun.

But the seizure sucked and I felt ashamed like I couldn't tell anyone, because my rules weren't a secret and people saw me break the rules. No one judged me. Friends have been great.

I got my levels checked again this morning. Last night was my last rule-breaking moment.  I'm back off the good stuff....tear. I have no idea why that has such an effect on me. I don't even think it's related to the medicine.

My friends have often described me as a "rule follower" sometimes I think it was good preparation. I don't know how I would have gotten through the last few months without that discipline. My doctor believes days without any of these rules are coming up, well because I asked. LOL. I just feel tied down, by medicine, and by my choices.

I still don't know how Gizmo managed to save himself through what - 3 movies?  2? I don't even remember. I just know that rule-following was very important and as a kid that message was received loud and clear. I was totally afraid of those gremlins and made sure to listen to the cautionary ending of that movie...

"Well, that's the story. So if your air conditioner goes on the fritz, or your washing machine blows up, or your video recorder conks out; before you call the repairman turn on all the lights, check all the closets and cupboards, look under all the beds, 'cause you never can tell; there just might be a gremlin in your house".

In all fairness, I may not be to blame, but these rules are all I have to cling to right now, they seem to be the only thing to making a difference.  I think everyone has rules or guidelines in their lives that keep them from becoming a "gremlin," I think we all get off course and struggle to find a way back, find a way to stay on track. Sometimes we lean on family or friends, we dig in and find strength to pick ourselves back up, or we rely on God for strength, knowing we can't do it alone. Sometimes we have to change the rules, modify them, work with them, I think the best thing we have are people in our lives where we can be our true selves once we've gone over the edge and need to find our way back. They understand us, forgive us, show us grace and understanding for breaking the rules. My husband and I have struggled to meet there in the past, but now he's the master of this. He understands how to hold my hand and lead me back to that place. My strength and his love and grace has helped keep me a mogwai. I wouldn't want to go through this journey without both of our learning and love.