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Saturday, June 30, 2012

Glamour Girl

I am a glamorous mother of four.  And what do we glamorous mommies do on Saturday nights at 8 pm?  We go to Wal-Mart to go grocery shopping, sans children.  As sad as it sounds I get very excited about these late night shopping trips, even if they are to Wal-Mart.  I've got nothing against Wal-Mart, but I prefer to go somewhere else if I'm able. I should also mention that I make these trips in my pajamas.  Oh get over it, you do it too. And, no matter how uppity and sophisticated you think you are, the truth is, if you have children two things are inevitable:

1. You WILL shop at Wal-Mart at some point in your life, and
2. It will be in your pajamas.

I did manage to put a little make-up on, just in case I ran into one of those "judgy-mcjudgersons" that I'm almost guaranteed to see.  You know they type.  It's the woman in her stiletto heels and perfectly manicured nails picking out organic shit to spread on her low-carb tree bark.  She'll see you, flash a million dollar smile, and look you up and down about 6 times during your 30 second "conversation."  All I can think when I see this look of disapproval is, "But, you failed to notice that I did NOT kill my children today, in fact I even fed them...three times.  And I worked out and (luckily for you) showered."

If you can make it through this part of the trip, it's all uphill from here.  As you look around, you'll begin to notice your fellow shoppers.  And although you are wearing cut-off sweatpants and an old t-shirt, you'll feel as thought you may be ready for the red carpet.  You've got to love Wal-Mart shoppers, especially late-night shoppers.  However, the best part of the trip is seeing the pimple-faced, shaggy-haired teenage stock boy trying desperately to align the ever elusive tampon boxes.  How does one get this job?  What contest in Hell did he lose?  He fumbles with the boxes, and although his face is the color of a tomato and sweat is pouring from his temples, he perseveres.  I linger there for a moment, just to be...well...me, and give him a little grin.  Oh baby boy, if you don't know your way around a box of tampons...

Now comes the checkout.  Here's the thing, I only ask, "How are you?" because you asked me first.  I don't actually want to know.  And not ONLY because I'm a bitch (although my sister would disagree) but also because I don't know you.  Our relationship is strictly customer/cashier.  I do not automatically know your mother-in-law's third cousin simply because I got into your checkout line.

I get home and begin unloading groceries and realize that once again I've gotten everything that EVERYONE else needed.  Toothpaste for the kids, soap for the husband, whipping cream for the baby, and various other items on "my" list.  What have I forgotten for perhaps the 53rd time in a row?  A new eyeliner pencil. The one I'm currently using was a gift in my Christmas stocking...last year.  And you'd think this would be easy to remember because every time I use it, the color I achieve by applying it is actually blood that's drawn by the little wooden shards sticking off the end.  If I "sharpen" it one more time, it will be dust.  But, you better believe everyone else got their crap.  Not everyone can be this glamorous.

Thursday, June 28, 2012

Mother or Martyr?

At what point do we mothers decide that everyone else's needs are more important than ours?  It probably starts somewhere around conception, after the nausea sets in.  "It's ok little fetus, take all that you need from me.  I'll just live out my days with my head hanging over a toilet.  Surely at some point my stomach will just eat my intestines.  I should be fine."  Yes, I think conception is the beginning of martyrdom.

My sister and I make fun of our own mother for this all the time.  That woman would eat crumbs off the floor before one of her kids/grandkids even had the chance to hint at being hungry.  She was always the one that claimed to just love the crappy parts of fried chicken.  The legs and thighs would all be gone and she'd eat whatever was left.  She also recently offered to go on a Disney vacation with my family.  We've been wanting to go, but unsure how Easton would tolerate the trip.  So, of course my mom says, "Oh, I would love to go and just sit in the hotel room with him while the rest of you went to the parks."  Really, Mom?  I mean, who wouldn't want to travel 19 hours in a vehicle with 4 children just to sit and watch hotel room cable for 10 hours a day?  It's everyone's dream vacation.

Unfortunately, I've noticed that this trait doesn't stop with my mom.  I do it, too!  I don't even pee by myself. Why in the hell do I convince myself that my daughter's plea for her lost sandal is more important than my ability to urinate on my own?    However, I have realized that as much as I give up for my children there are some things that just don't fly.  For example, if you were to happen upon my stash of chocolate during a certain time of the month and decide that it was for you, I don't care how cute you are or how much DNA we share.  I will cut you.  Also, my husband recently decided that he was going to "take over" my blog to air some of his frustrations.  He says this with a little smile on his face.  Here's the thing, dude...dimples or not, you touch my keyboard and you'll be pulling back a nub.  This is my sacred ground, my holy place, my sanctuary.  It's MINE dammit!!!  Am I not allowed to have ONE thing for myself?  I gave up my breasts, my ass, and my elimination privacy.  I haven't had a good piece of fried chicken in 9 years.  But, I'm putting my foot down on this one...probably right on top of Morgan's lost sandal.

Saturday, June 23, 2012

5K

You know that sticker on facebook that says, "Running.  If you ever see me running, you'd better run too...because something is chasing me,"?  I've laughed at that one several times, but have come to really enjoy running.  Today I realized that it's because someone is chasing me.

I was supposed to run a 5K this morning.  It's something I've always wanted to do.  It's something I had wanted to cross off of my bucket list.  Although I've wanted to, I'd never really nailed down a day to do it.  I decided to set a date and that date was today.  My sister-in-law called about a month ago and said that she was going to try one on June 23 and wanted to know if I wanted to do it with her.  The idea of picking a day to do this excited me and I began to try and train for it.  I realize that a 5K is small potatoes in the running world, but it was going to mean something to me.  I went running when I could, which wasn't often enough, but sometimes life just gets in the way.  I was doing ok, but only getting to about a mile or so before having to stop for a breather.  I was getting nervous as the day approached because I had never made it the full three miles and was afraid that I wouldn't be able to finish.  Everyone kept telling me that I'd be fine because people are stationed all along the way cheering you on and giving you drinks of water.  Motivation would be everywhere.

Well, my life has a way of catching up to me and my big dreams and several roller coaster moments with my son's health caused me to miss the deadline for payment of the race.  And more importantly, didn't allow me to train as I had wanted.  So, once again, I felt that I'd been cheated.  I went to bed last night thinking about how nice it would have been to cross that finish line this morning.  It took me hours to fall asleep, and when I finally did, my son coughed and whined a little and I went to check on him.  It was 3:30 in the morning.  I laid back down, but I tossed and turned for the next hour and a half.  Finally I decided that enough was enough.  I got up, put my running shoes on, grabbed my ipod, and hit the road at 5am.  And I ran.  I ran hard and I didn't look back.  I pictured the face of my son, and the pain he endures on a daily basis.  I ran through tears.  I ran through side cramps.  I ran for me.

I pushed myself further and further, and each time I felt the urge to quit, I kept going.  So, I'd like to thank you, Epilepsy.  Because it's your ugly face that kept me going in my weakest moments.  It was the desire to kick your ass that made me push and push and push.  When I got home, I got in my van and tracked my route.  I kept my eyes away from the dash as it ticked away the miles.  I was waiting for that last moment.  The moment when I'd pull back into my driveway and see either triumph or defeat.  I thought about how I'd feel if I hadn't quite made it as far as I'd wanted. I may not have had the people standing along the road cheering me on.  And I may not have had the luxury of water breaks, but I certainly had motivation. I decided that either way, it would be a victory.  I pulled into my driveway, looked down at the dash and saw it...3.1 miles.  I'm pretty sure that a 5K is 3.2.  Well, I'll tell you what, Epilepsy, you can have that last tenth of a mile.  Because today is mine.  I got up before the sun.  I got up before you could knock me down.  And today, I win.

Friday, June 22, 2012

Skinned Knees

Time for a little truth-telling.  Some "brutal" honesty, as some may say.  I know that the humorous blogs are more fun.  I know that making fun of life is more entertaining than what I've been writing lately.  But, I write what I feel.  It's therapeutic for me to see my feelings written down.  And that therapy goes both ways.  Unfortunately, lately I've had more of those downer moments than I have good ones.

The truth is, this is really hard.  Living life afraid all of the time is exhausting.  I've always had an anxiety issue, but now it seems that the anxiety is warranted.  Before, all of my "what if" situations seemed crazy and unrealistic.  Now, my anxiety is reality.  We go to bed every night wondering what the next few hours may bring.  Neither of us plan ahead anymore, and that alone is a huge change for us.  We think about things that we'd like to accomplish the next day, but also know that we could be leaving for the hospital in the middle of the night without so much as a warning.  In fact, I've made a list of things to put together for an overnight bag in case I have to call someone to bring our supplies to us.  I keep it in my son's room.  I've gotten into the habit of showering at night and keeping a change of clothes next to my bed so that if I have to leave on a moment's notice, I can go that much faster.

The hardest part is the unknown.  We have no official diagnosis.  We have no actual path to follow.  Will this be something we look back on as some long nightmare?  Will we still be having this same conversation in 20 years?  Is 20 years something we can even hope for at this point?  Who knows?  I know that other people struggle with so much more.  I know that others have more hardship than we do.  I know how lucky we are to have support and love around us.  But, that doesn't change the pain and frustration of the day to day.  It doesn't make this easy.  I know that we are supposed to always smile and be grateful for what we have, and to remember that tomorrow is a new day with new possibilities.  But, if we're being honest, that isn't reality.  Do we have a new appreciation for life and the blessings we've experienced?  Absolutely.  In fact, it's one of the things for which I am the most grateful.  I have a passion for life that I never knew was possible.  I appreciate more in one day than I did in a year's time before all of this happened.  And, I will certainly write about those things.  I will cherish those things and even brag about them from time to time.  However, I will not forget to share the hurt.  I will not avoid talking about the pain because it's too hard.  I don't believe in only highlighting the pretty things.  I will not be fake.  I will not hide my fear and sadness.  They are part of this, too.

My husband and I have gotten stronger, that is certain.  But, our strength has come out of necessity.  It has come because while one of us is beaten and weeping in the corner, the other is standing and taking the wheel. We do this together, because it's the only way we can survive.  We feel defeated over and over again on a daily basis.  We revel in the good moments, and feel the sting of the not so great ones.  We are lifted and dropped, lifted and dropped, lifted and dropped. No matter what we do, the outcome is going to be what it's going to be.  We can't "work harder" or "try more". Helplessness is not something to be dealt with lightly.  It's one thing to say that you would die for your child. It's quite another to know that you would actually do it.

I want to stop being angry all the time.  I want to stop wondering why we are going through this and others aren't.  And that's the ugly truth of it all.  I am mad because I feel so alone in this sometimes.  All of the support in the world isn't going to make someone else understand the life we live:

-You know that time at the end of the day when the kids are in bed and you and your spouse just get to talk to one another?  It doesn't matter what it's about as long as it's just the two of you. I want that back.  Instead, we fall into bed nearly comatose and without even a word.

-I remember that time, when babies are discovering things and they point to everything around them and want you to see what they've discovered.  I remember being fed up with that, and gladly giving the job of explaining every object in the surrounding area to someone else for awhile.  I want to be bothered again.

 -Have you ever noticed that most toddlers have one thing in common?  Skinned knees.  I know chasing a toddler can be annoying and time consuming, but all I can think about right now is how incredible it would feel to see my son take steps on his own.  I would give nearly anything for my baby to have skinned knees.  His knees are perfectly intact.  No scratches from running too fast and falling.  No bruises from climbing into things that he shouldn't.  I want to kiss boo boos and fix things with bandaids.  I want to make it "all better" with just a hug.

I feel loved.  I feel grateful.  I feel happy.  I feel excited.  But I also feel pain.  I feel helpless.  I feel despair.  I feel loss. All of these things come with the territory.  I know that, and I'm certainly willing to admit to all of the above.  But, if I could, in what may be a moment of weakness, can I just ask for one skinned knee?

Thursday, June 21, 2012

Life By Chocolate?

A life managing epilepsy is exhausting in all ways.  Physically so because sleep is so sporadic and sometimes non-existent.  And it's emotionally exhausting because there are never any answers.  In fact, the more answers you seek, the more questions arise.  We spend our entire day doing all of the "recommended" things.  We give meds, TRY to maintain a sleep schedule, arrange therapies (and work on them in our FREE time), and follow a strict diet.  However, we are also constantly looking for those things that aren't necessarily recommended.  Recently we've discovered one such method.

It actually started around Easter time when Easton, my 2-year-old epileptic son, found some of his siblings Easter eggs and opened them up to discover little chocolate eggs inside.  Now, you would think that this would have been an issue for him because only a few short hours before he pretended that he was as weak as a wet noodle.  This was because it was occupational therapy time, and as wonderful as his therapist is to him, he is ornery and rebellious for her.  He just couldn't muster the strength to grasp a small object, however now he was opening the eggs on his own and pulling the candy out...interesting.  Anyway, I didn't know he was doing this for quite some time and when I found him, his face was covered in chocolate and he had empty candy wrappers in his hands.  I assumed that we would see several seizures following this little mischievious moment because he was on a carbohydrate restricted diet at the time.  However, I was pleasantly surprised to see NO seizures for several hours.  This is unheard of for Easton, and although I didn't attribute it to the chocolate at the time, I did joke that it would be his new drug of choice.  That joke is becoming less and less funny as we discover more seizure-free moments at the hand of chocolate.

Easton's ketogenic diet allows for few "fun" foods.  So, when his dietitian gave me a recipe for a "chocolate" snack I jumped on the chance to give him something new.  The chocolates consist of 11g of real butter and 5g of cocoa.  I also add vanilla flavoring and some liquid sweetener.  I gave them to him for the first time on a day that he'd had SEVERAL hours of seizure clusters.  They seemed to be relentless for so long and I figured it wouldn't hurt him and might even be a nice treat for him.  I gave them to him at 7pm one evening and by 7:30 the seizure count had been cut by at least 80%.  Then, from 7:30 to midnight he had none.  ZERO. ZILCH. NADA.  WHAT?!?!?!  Are you kidding me?  Of course, thanks to my father, I am forever the skeptic and so I still wasn't convinced that this was caused entirely by the chocolate.  However, I have now tested this theory several times and each time the number of seizures drops drastically and many times he'll have only one or two for several hours.

My brain immediately hits overdrive anytime something like this happens and I try to make sense of it.  I picture that word "brainstorm" when this happens because that's exactly how I see it in my brain.  Words, theories, ideas come flooding in and I dump what I don't need and hang on to those things that I think may be workable possibilities.  So far, the only thing I can come up with is that chocolate is derived from cocoa.  Cocoa.  Cocaine.  Caffeine.  Stimulants.  Sometimes stimulants work differently in some people's brains than they do in others.  My brother is autistic and giving him Mt. Dew is like giving him Prozac.  The same is true for Ritalin in a person with ADHD.  Ritalin is a stimulant and would send you or I on a roller coaster ride of energy, but in someone whose brain functions differently it allows them to focus.  I began to brainstorm this idea and thought that maybe we are giving too many brain-numbing medications to some epilepsy patients and maybe they need a brain stimulant.  I know every neurologist who may ever happen to hear this theory would probably have an aneurysm because you are supposed to avoid caffeine with epilepsy.  But, I watch this kid 24 hours a day 7 days a week, and I am telling you that chocolate makes a difference.  Why?  I don't really know, but to be honest, I don't care.  It would be great if something could be discovered someday that could help thousands of others, but at the moment I'm only interested in this one patient.  The one that I watch struggle to do things that people take for granted every single day.  The one with the curly dark hair and amazing blue eyes.  The one who loves cows and dancing to music.  He's the one I work for.  He's the one I suffer with day in and day out.  He's the one I'll die trying to help.  And I realize that maybe none of this is useful.  I do understand that countless other variables could be at work here.  But, I wonder, if there are no right answers how can there be any wrong ones?

Tuesday, June 12, 2012

Numbers Game

I hate numbers.  I hate math.  I've never been any good at it, and until recently I would have been right there with every high school age kid that claims, "I'm never gonna need this."  But, like many things in the past year, life has proven me wrong.  I am surrounded by numbers:

66 - The number of grams of whipping cream needed in Easton's hot dog meal.
25-50 - The number of seizures my son has in one hour at any given point during the day.
5 - The number of times a day that I spend weighing food.
3 - The average number of medically related phone calls I make on a daily basis.
2 - The number of times I measure my son's urine for ketone concentration.
1 - The number of therapy sessions Easton has each day.
100 - The number of times a day that I feel guilty about not working on specific therapy needs.
And the number of times I am on the verge of tears due to frustration, fear, or emotional pain varies.

However, today I'm not interested in any of those numbers.  I logged those numbers for future reference.  I kept track of everything that I usually monitor throughout the day.  But, today they don't matter as much as the number six. Because six is the number of times I heard my baby belly-laughing from the kitchen window. He was outside with his brother and sisters, playing in a tent.  No therapy.  No medication.  No seizures.  Just laughter.  Just playing.  Just being a little boy.  I may not be a mathematician anytime soon, but tonight I have a new appreciation for numbers.