It's been a long time since I was a kid, and when we say a kid does that mean when I was five, which I barely remember?  Or is it sixteen because I was still a minor?  I remember sixteen a lot better than five.

Honestly, I wasn't really a trouble maker growing up.  The biggest problem that I faced was when I was fatigued.  Looking back and being the mother of two children with mitochondrial disease, I understand myself so much better.

See, I didn't know I had mito when I was younger.  Neither did my parents.  Mitochondria make almost all the energy your cells need to sustain life.  That's a pretty important job.  

In mito, they aren't working very efficiently.  Think of them as a cell phone battery that has charged overnight, but still doesn't have a full charge.  You thought it was going to be full, but the power was out half the night, so it didn't charge.  A lot of people with mito have sleep disorders because the mitochondria in the brain, lungs, and muscles aren't making enough energy to allow them to breathe.  Or maybe the heart can't seem to circulate the blood well enough, and their oxygen sats drop, their blood pressure so low it can't even be measured.  Maybe they just have nightmares, toss and turn.  Or they don't enter REM sleep as they should.  Some have periodic limb movement disorder and/or restless leg syndrome.

So, the next morning, instead of waking up with a full battery, they are already at fifty percent.  They're sluggish and tired from having to work so hard during their "rest".  I don't remember ever being a huge morning person.  In fact, many days, I'd stay home from school because my stomach would hurt in the morning really bad.  I'd feel very nauseated and tired.  But by noon, after I'd had some food and actual rest, not sleeping because that was more like work, I'd feel a little better.  Then, people would accuse me of playing hooky to miss school.  That happened a lot.  

It happened when I played sports too.  The heat was really hard on me.

One night when I was maybe five, I wanted to bat at my tee-ball game, but I didn't feel good.  My mom told me if I was going to bat, I had to play an inning in the out field first.  They thought I was just being lazy, that I liked batting but hated the out field.  Okay.  I did hate the out field.  It was boring.  Rarely did someone hit the ball that far in tee-ball.  And I had undiagnosed ADHD.  Sometimes, I'd spin around out there.  Sometimes I sat down and played with the grass because my legs would get tired.

But I wanted to bat, so I agreed.  Then, a few minutes after being out there, I started throwing up.  My doctor was my coach, and he got on to my mom for bringing me while I was sick.  The reality is, I didn't have anything contagious.  It was just me.  

I got "stomach viruses" no one caught all the time.  Usually, once I got IV fluids, I'd be fine.  I know why now.  But then, we didn't.  It happened if I was really tired.  When I graduated high school, I went to a lock in where we stayed up all night.  I remember getting a doughnut and orange juice as I was leaving, driving home feeling like I was going to die, and walking into the house and immediately being sick.  I dry heaved for two days before my mom took me to the hospital.  As soon as they started my IV, I quit retching, and I was able to keep Gatorade down.  My miracle drug is IV fluids.  For my kids too.  I know that now, but we didn't know that then.  They would just say, "Oh, she must have been at the end of her virus."

Back to when I was five, my parents took me to Disney World.  My siblings stayed behind because I think they were relieved to have a break from me.  I came across as a whiny brat a lot.  But the reality was that, at five, I was tired all the time.  And I had no idea why.  I've watched both of my kids go through the same phase I did.  Terrors.  No punishment strong enough.  Screaming, fighting, demon child.  

And I know you're probably thinking, if you have no energy then how did you fight?  I don't know.  It's like a delirious type of behavior that spirals when the brain is so exhausted.

I can rationalize it, but what happens when a five year old is really tired, doesn't feel good all the time, and doesn't understand?  They freak the heck out.  

There's a picture of me at Disney of my dad holding me like he's about to throw me in a fountain.  We're smiling, but what happened leading up to that was a very whiny Brandi who was about to have a meltdown in the middle of Disney.  I'd been crying, been grumpy that my legs were tired and that I was too hot.  I remember this well.  Like it was yesterday.  He picked me up and acted like he was going to throw me in the fountain to cool me off in an effort to diffuse the situation. 

Knowing mitochondrial disease, I understand.  Now, I think they do too.  My body doesn't regulate body temperature like it should.  I don't sweat enough, so I can't cool myself down naturally.  Leg pain, muscle cramping, is very common with mito, especially in the heat.  Summer. Is. Hard.  Both my children use wheelchairs for long distances.  They can barely be outside in the summer without being wet.

Looking back, I wonder what my vacations would have been like if we'd known how to handle my medical condition.  What my life would have been like?  I can assure you, I would have been in a lot less "trouble".  I would have had less meltdowns, temper tantrums because we would have known how to support me.  Although, I think it would have been impossible to stop them completely.  I knew with my kids, and they both went through that.  They still do when they are over-fatigued.

But regardless, what I went through just made me stronger.  If I'd known I had mito, I would have never had kids.  We found out at the end of January 2009, that Noah's condition was genetic.  By March 2009, Chad had undergone a vasectomy.  

Those hard times through my childhood prepared me to be the mother my kids need me to be, to empathize with them and understand what it's like to be them.  I get it. In fact, no one probably gets it better than I do because of what I went through.

More than anything, I spent the majority of my life not being believed that my condition was real.  I was called lazy and a hypochondriac.  I have no tolerance for that with my children.  It's important for them to know I believe what they are feeling is real to them.  

Most of the time when I got in trouble, it was because I was over-fatigued.  When I was and am tired, I was mean and misunderstood. 

My husband will vouch that I still have my moments even as an adult.  They almost always happen when I don't feel good or am exhausted.  It's like my filter, my ability to cope with life, is trapped in the charger that can't seem to fill the empty cell phone battery fast enough.

And other things I got in trouble for:  making a D in English my sophomore year.  HAHA!

Kicking my step-brother under the table at dinner (all the time - he usually started it).  

Talking back.  Talking too much.  Not cleaning my room.  Not doing my chores.  Forgetting to put papers out that needed to be signed the night before school.  Procrastinating.  

Overall, I was a pretty good kid who didn't get in much trouble.  I was afraid of my mother's wrath. :) 

Last week, my news feed was filled with posts about the gorilla and the little boy at the Cincinnati Zoo. It seemed most of my friends were insistent the mother should face charges for neglect.  I mean, because how could a mother possibly lose her kid in a zoo or anywhere for that matter?

My thoughts on that prompted many deleted posts, then I finally had to let it all out here.  It's simple how a mother could lose her child.  They're quicker than lightening.  Agile.  Tiny.  They can get in places we can't imagine.  And once they're out of your grasp for a few seconds, especially in a busy place, as a mother, your thoughts immediately go to all the worst possibilities.  It's hard to imagine you'll ever see them again, yet you're hopeful.

I can't imagine what that mother felt when the realization hit her.  Except I can.  What I can't imagine is being bullied by the entire internet, judged by people who weren't there - who couldn't see that she was tending to her other child who was crying.  But this post isn't about that.  I've not seen one article in my feed about how the DA decided not to press charges against her for all the above reasons.  

This blog post was inspired by the story that immediately began sparking reactions that overshadowed that story:  a woman who was raped while unconscious behind a dumpster by an affluent Stanford student.  

I found myself reading her victim statement one night last weekend when I couldn't sleep.  As I was reading it, I found myself thinking that I couldn't imagine going through what she had.  To not only be violated in the worst way a woman can be, but then to be re-victimized by the justice system with that joke of a punishment toward her rapist because of the effect the consequences would have on him.  On him!?!

Anyway, one thing that kept creeping into my mind was that technically I was raped.  But every time I let that thought come into my head, I quickly dismissed it.  I never scrubbed myself in the shower.  There were no nightmares.  I didn't think I needed saving from the person who violated me.  There were no heroes in my story because for twenty years I've remained silent aside from a few family members and close friends.  And I think the major reason I've never spoken out about it is because I was in denial that I was raped.  

I still am.  

In fact, for a little bit, I didn't even know what he had done to me was wrong.  My first gynecological exam, the doctor asked if I'd been sexually active.  I said yes.  Because we had sex.  Even though I didn't want to.

The doctor did the exam and seemed baffled.  She told me my hymen was still in tact.  She asked if I knew the definition of intercourse.  That's when the patronizing judgement started.  I didn't like it, and I was determined to avoid it at all costs after that.

Of course I did.  I was fifteen.  He was my boyfriend.  We knew what sex was.  I thought I wanted it.  I changed my mind.  He didn't.  He started and finished.  I didn't feel anything but pain, regret, guilt, and fear.   

But if a doctor didn't believe I even understood what the act was or how it was done, how would I ever convince anyone I had changed my mind about wanting it to begin with?

My mother asked how it had happened on the way home.  She made me go into detail.  Horrifying, embarrassing, the shame.  I told her that I initially said yes.  We'd planned a time and place to do it.  Right as it was about to start, I changed my mind.  I said I didn't want to.  

He said, "It's too late."

And when I complained it hurt, asked him to stop, he told me he had to finish.  

I was fifteen.  I knew what sex was, but I didn't know whether a guy had to finish once he started.  I just thought it was too late for me to change my mind.

My mom told me it's never too late.  She told me that was called date rape.  And it was like it went in one ear and out of the other.  He loved me.  He was my boyfriend.  He wouldn't do something to hurt me.  

This is a burden I've carried for twenty years.  I've blamed myself.  I've felt guilty and ashamed.  But I never once viewed myself as a victim or a survivor.  It was a bad decision to put myself in a precarious position to begin with.  But after that relationship ended, I promised myself I'd never have sex with a guy again until I was married.  In fact, I made it a point to tell every guy I was with after that as soon as things became romantic that I was waiting until marriage.  And every guy respected that.  In fact, several of the guys I dated were also waiting.  If asked, I identified as a virgin.  Because technically, I was still one.  

If nothing else came from that experience, it taught me to value myself more, to have higher standards.  I remember one guy asking if he could kiss me the summer before my junior year.  The first time someone asked for my consent.  He. Asked. To. Kiss. Me.  I laughed at him.  I said, "Don't ask first.  Just do it.  I've waited for this since the seventh grade."

But looking back, I hope my boys will ask a girl before they kiss her.  I hope they will respect that consent should always be given.  I deserved to be asked.  I deserved for someone to actually ask for my consent to touch my body, to enter it with any one of their body parts.  And if I had changed my mind, I still had the right, the power, the ability to have that consent revoked, but most of all honored.

For twenty years, I've carried shame and guilt.  I've kept silent because we were young.  In fact, if I was too young to know it was rape, maybe he was too.

But that's the problem.  Our youth need to know about consent before the age of fifteen because not knowing what rape is doesn't excuse it.  It doesn't make it any less rape.  It doesn't change the fact that I wanted to stop, but he continued.  It doesn't negate the hurt it's caused me for twenty years at the violation of my body, my voice.  

The story of the rape at Stanford centers around consent.  The victim's statement has been on my mind all week.  And I've wanted to speak out, but I've been afraid.  The thing is, if everyone is afraid to speak out about it, then how will change happen?  

If rape happens to one in four college aged women and only one speaks up, then how do we expect there to be change?  Emily Doe can be the voice for all of us, but at the same time, there is power in numbers.  We need to rally behind her, to support her, but to also share our stories.  Because my guess is once stories are shared, that statistic will be even more staggering. I have so many friends who have similar stories to Emily Doe and to mine.  There is no way it's just one in four.

Last night, I asked a friend if I should share my story.  She said, "If it's comfortable.  It needs to be comfortable for you."

The truth is, talking about this publicly will never be comfortable.  It won't be comfortable for anyone who has endured this kind of violation.  But do we not talk because we're scared, because it's uncomfortable, because we hurt?

Another friend told me change comes with age, education, and awareness.  She helped me understand that the reason I've probably struggled with this is because of my age at the time.  Had this happened when I was in college, I'd feel differently about this experience.  My friend is a date rape survivor.  She is quick to correct me and tell me she's not a victim.  She has used the experience to help others and refuses to allow that word to be used to describe her. 

She also told me she feels like every rape survivor should give back either by mentoring and volunteering or by sharing their story.  That it's the way we bring about change.  She dedicated her life to advocacy after her experience. 

But I've done nothing but hide, deny the truth, and pretend it didn't happen.  

When I opened my book of 300 writing prompts (which I realize I've slacked off on this week - I have excuses, but I won't bore you with them), and I saw this was my question, I knew what I had to do.

I'm not a super popular author, but I do have an audience.  I do have followers, and most of all, supporters.  Many of you have already shared your stories because of the Stanford story.  Your bravery inspired me to do the same.  And I hope my story will inspire someone else to advocate or share their story.  Tag you're it!

Maybe, just maybe, our generation of women can help in raising better boys and men who understand that you ask for consent every time, even for a kiss.  You listen for a no, but more than listening for it, you honor it.  And if the girl can't speak, you get her help instead of violating her.  

As the mother of two boys, I had this conversation in simple terms with them a year ago.  It's one we'll continue to discuss as they grow older.  

Lastly, even if you can't talk about your story, even if you can't share how you are affected by rape - and I bet even if you're not a survivor, you know one - I hope you'll help the boats find the lights.  With each story shared, we become a beacon of hope for someone else.  

It's funny.  A year ago, before I started clean eating, my equation would have likely most definitely included some kind of sugary treat like Kroger caramel cake.  It's arguably one of my favorite things in the world.  

But I haven't had that in a long time.  In probably well over a year.  See, around this time last year, I was being diagnosed with Idiopathic Intracranial Hypertension.  Already having a laundry list of diagnoses, most rare and some life-threatening, you wouldn't think that would have been the one to change my life.  It did, though.

IIH is linked to an increase in frequency in women who are child-bearing age.  Check.  And overweight.  Check, check.  Having a metabolic and thyroid condition certainly makes it very complicated for me to lose weight.  We know for a fact from my resting metabolic rate test that I reach my peak O2 and heart rate too soon.  I have decreased exercise capacity.  That's a fact.  Not something I'm making up as an excuse to be lazy.

​I would love to be able to run marathons, but the thought alone exhausts me.  Not just make me want to take a nap exhausts me, but sends me back to the day of that RMR test where I blacked out on the bike, where I could barely keep my eyes open for the rest of the day, and slept through most of it.  

Oh, and add asthma on top of all those things.  And now I feel like my head is going to explode most days from the pressure.  Yeah, it's hard to even imagine moving more than I have to.

But back to IIH.  This was considered a bit of a medical emergency at first for me.  It's a serious condition.  We're talking too much fluid on the brain, putting pressure on optic nerves and other areas.  It causes tumor like symptoms, which I had been experiencing.  My MRI showed swelling of my optic nerves, which was the most concerning.  Well, that and along with some venous stenosis, which meant I was at high risk for stroke.  I had my MRI at about 10am, and by 1:30, I had been called back to the doctor's office to go over my results in person.  I cried the whole way there.  I cried while I was waiting.  The entire time, I tried to wrap my head around how I'd get through a brain tumor on top of everything else.  I contemplated leaving my children at such young ages.  

All the life threatening conditions I'd dealt with never seemed quite as real as this experience.

After hearing I didn't have a real tumor or cancer, I was immediately sent to the eye doctor that afternoon.  Then, I was sent to the neurologist Tuesday because it was Friday of Memorial Day weekend.

The neurologist was very frank with me.  He ordered an MRV to make sure I wasn't about to stroke out for the next day.  Then, he told me aside from about two medications, the only treatment options were losing weight (at least 10% of your body weight) and as a last resort, a shunt.  Oh, and I would be getting my first of many spinal taps the next week to take some of the fluid off my brain and confirm diagnosis.

I tried counting calories for that next month.  It wasn't working.  I actually gained weight.  When I went back, he wasn't happy with me.  I felt terrible because I was trying, but apparently not hard enough.  He was very stern.  He told me he expected when I came back in a couple of months that I would have lost a considerable amount of weight.  Then, he handed me a card for a weight loss surgeon.

Desperate to avoid that, as I carry three genes that put me at high anesthesia risks, I started researching clean eating.  Several of my friends were doing it, having a lot of luck, and even though I'd been lucky to hear that I didn't have a real brain tumor or cancer, the scare was enough to make me really re-evaluate the crap I was putting in my body and calling nutrition.  

July 7th, I made the decision to change not only my diet, but the diet of my entire family.  And when I say diet, I mean what we eat, not a short term change.  This was a lifestyle change I was determined to maintain.  For the first time in my life, I didn't have a choice.  Losing weight was the only option I could see as a good one for me.  Brain surgery?  Bariatric surgery?  A medication that makes me feel like I'm being shocked all day in my arms and feet, makes my potassium bottom out, and dehydrates me thus making my mito and dysautonomia worse?  None of those were options for me.

A couple of months later, when I went back to the doctor, I'd lost about thirty pounds.  I'd not even weighed at home.  My judgement for my progress was on how none of my old clothes fit me anymore.  It was easy to look at my face and skin to see the difference.  Not to mention, I felt so much better.  My IBS was better controlled, I didn't feel like I was having blood sugar spikes and drops, and I had zero cravings.  Zero.  

Up until that point, I had no idea how much of a hold sugar had on me, how much of a prisoner I was to that crack.  That's what it is.  It does the same thing as other drugs to your mind.  And I was proud to have broken free.

By November, I was in remission from the IIH.  But then in January, I relapsed.  I've maintained my weight loss, but kind of stalled.  I've failed therapy on one of the drugs.  I'm currently taking the one that makes me feel like I'm being shocked.  It's helping some, enough to where I feel like I don't need a shunt.  

But my point is my equation, the one I would have chosen for most of my entire life, has changed over the last year because of all this.  It's made me re-evaluate my priorities too.  It's been a scary time - for me, for my husband who has had to watch me struggle, for my kids who had to visit their mom in the hospital for about a week (my birthday week on top of that).  And the last part is what gets me the most.  My kids have enough stress from their own illness.  It killed me for them to be worried about me - about how my head feels, for them to sit in with the appointments to the neurologist and hear what I was being told, to wait for me to finish spinal taps, and to see me in pain.  They know more than most kids about medical stuff, they understand more.  This is our life.

Through all this,  you'd think I would have given up on everything else.  I'd been suffering from the worst writer's block for two years.  During that time, I relied on my graphic design skills to help bring in extra income for our family, to keep me busy during the day.  

But in October, the block lifted.  Maybe it was as simple as treating the IIH.  Maybe it was sucking up all the doubts, all the fears, and finally finding my voice - my true voice.  Life is short, and I didn't want to spend another minute not reaching my goals.  Or at least trying.  Giving up wasn't an option.

It didn't take long to realize I couldn't do it all.  Writing full time left little time for anything else, so I hung up my graphic design coat.  It was a hard decision, but one I'm happy with.  This is where I'm happy, where my passion is (for now, at least).

So, my equation is quite simple.  It's all the things IIH has taught me over the last year.  

My Family + My Faith + My Health + Chasing Dreams = Everything

Sometimes, less is more.  I'm not writing a huge article about what the wind is saying.  I'm just going to think of words that come to mind.  And there are different kinds of winds.  

On a breezy day:

Dance.  
Sway.  
Move.  
Slow down.  
Don't miss the beauty in the leaves prancing back and forth because of the hustle and bustle of your life.  Feel me caressing your face.  Smile.

Gusts:

The breeze didn't get your attention, so I'll say it a little more strongly, like a loving nudge.  I'll give you no choice because you won't be able to go as fast against my force.  Slow down.  

Strong, storm force winds.

Fear me, for I am powerful.  The nudges weren't enough.  Just be.  Shelter in place.  Listen to what I'm screaming, howling.  What does it mean to you?

I believe everything happens for a reason, that with every bad situation, some good comes from it.  So, with that mentality, I try to remind myself that all the struggles, weaknesses, and turmoil I experience are ultimately worth it in the end. 

The struggle to get and stay pregnant was worth it.  I have a beautiful baby boy.  The second time, there was no infertility, as Jonah was a bit of an oops.  But the pregnancy was even more difficult than Noah's with pre-term labor and gestational diabetes starting at around seventeen weeks.  That time, I had a sick baby on top of the hard pregnancy.  It wasn't like I could really be on bed rest like I needed to be.  

One day, I had been at the doctor.  I didn't take my afternoon medication with me because I knew I was going straight home.  As I was getting Noah out of the stroller, his GJ (feeding) tube got caught on the strap of the stroller, dislodging it.  Not only was he screaming in pain, but with the J going into the intestines, it could potentially perforate the bowel if it becomes dislodged.  It's a bit of a medical emergency when it happens the way it did that day.

Noah was holding his stomach the whole way to the hospital, screaming.  And the hospital we needed to be at was an hour away.  I drove so fast that day.

When we got to the doctor's office, he realized he couldn't fix it, but at that point, I'd not had food for lunch.  He told his nurse to give me her sandwich, that he'd buy her a different lunch.  After that, I headed to the hospital.  They had a death in interventional radiology, where they change the tube, so we had to wait about four hours.  My baby couldn't eat during that time.  He was in pain.  And I started having massive contractions.  Every five minutes.  

When we were done, we went back to the pediatrician's office for something - can't remember what.  After I told him what was going on with the pregnancy, he told me to call my doctor and find out what hospital to go to, but to go to one.  I was bleeding, and that meant my cervix was changing.

My doctor told me to come back to Augusta.  Chad met me there so he could watch Noah.  My contractions were actually two minutes apart.  I'd gone from a fingertip that morning to two and a half centimeters.  I got admitted, and I was told we were having a baby.

But because of the gestational diabetes, the doctor told them to try to hydrate me (no doubt I was dry because I'd barely had food or drink all day).  They gave me a sleeping pill.  Someone came to get Noah.  I don't remember talking to my dad on the phone.  I don't remember much after that, really.

Just that the next day, I'd gone back to being a fingertip and sent home.  Was that worth it?  Yeah.  It was.  A couple of weeks later, I had a healthy baby boy.  And Noah's needs were met. 

Another instance is when we left all our family and friends to move to Atlanta in hopes of better medical care and schooling for the kids.  It has come with significant financial and emotional sacrifice, but every meeting I have with the school where I'm embraced and Noah's supported, lets me know everything we've lost along the way to get here was worth it.

Right now, the thing that is requiring the biggest sacrifice in my life is writing.  It's the source of all the conflict in my marriage, in my house.  See, I have severe ADHD.  I take hyper-focusing to a new level.  On top of that, I can't stand to start something and not finish it in one sitting.  That's pretty laughable since I write long novels.  They certainly can't be completed in one sitting.  But that drives me nuts, so I end up trying to write every minute, every hour of the day sometimes.  Granted, I still take care of my kids, but sometimes, family time is sacrificed so I can write.  Okay.  A lot.

My husband gets frustrated because he sees how high my hopes get with each new book, and he knows the higher the hopes the longer the fall if it doesn't do well.  He's watched me ride this roller coaster of ups and downs.  It pains him to see me hurt, and there's a lot of hurt in this writing business.  
Rejections from agents and publishers, negative reviews, losing people you thought were your friends, and the list goes on and on.  It's not just writing the book.  It's so much more.

Every time we get into an argument about my writing, I always say, "All that is worth it to me.  I'll suffer through that for the feeling I get when characters come in my head and I can translate their story for them."

Unless you're a writer, it may be hard to understand.  This is a dream I didn't even know I had for most of my life.  Well, all but the last three and a half years.  And now that I've found that I have this ability, I'm not willing to part with it.  All the negatives that come with it are worth it in the end when I'm looking at a bookshelf lined with all of my titles.  And now one that has my child's name on it.

Of course, what won't be worth it is if I lose my husband, so it's a constant struggle to find balance and better manage my time.  Those are two of my biggest weaknesses.  

So, writing.  It's not just worth it for me.  It's essential to who I am.  I can't even begin to imagine a life where I'm not able to express my thoughts with the written word.  

Thank you for reading my ramblings, for giving me an audience and platform to share my stories - the personal and fictional ones.