Rare Disease Day

   Rare Disease day is something that brings very mixed emotions.  Somebody asked me if I knew it was Rare Disease Day and I wanted to respond with, 

    “I lived rare disease for 23 months, I know what freaking day it is.”  

   But I didn’t, and just said yes.  I’m glad that there is awareness and a movement to bring research and funding to the Rare disease community; but also it brings back all those memories of not knowing, living in a storm cloud, and moments of darkness standing in hospitals.  Rare diseases will truthfully screw up your mind worse than anything will.  You go to the doctor and they tell you what’s wrong.  They give you information or something to fix it.  You go back to your life. 

Imagine multiple professionals in the field looking at you and saying, “I don’t know.  I can’t fix this.”  FML right?

   We live in an “instant gratification” world and that makes it 10x harder to deal.  You expect your phone to work immediately, you expect your food in 2 minutes or less, and you will be damned if somebody puts you on hold.  Now imagine that every day you wake up, every appointment you go to, you hope for answers.  Then you walk out and you have nothing.  No reason why the seizures happened.  No solid answer on why your precious little angel has to go through this hell.  No timeline for anything, especially how long you have her.  Now it probably seems ok to wait a few minutes for the lady to fix your hamburger, doesn’t it?

   I always said that Penelope’s diagnosis was not her definition.  Mainly because we didn’t have a definition and we had to make our own.  She wasn’t on this Earth long, but it was long enough to open my eyes to what is important and what can wait.  Rare disease day is much more than just acknowledging there are things in this world we don’t fully understand.  It is for the Moms and Dads crying every night because they can’t help.  It is for the kids going through unimaginable days.  It is for the doctors who work tirelessly every day to help, but sometimes have to say, “I don’t know.”       Maybe one day we won’t have to recognize this.  Today though, I’ll just cry for a minute and keep on trucking.

Holding Hands

We have held hands through the best of times and the worst of times. I guess everybody has their thing, and other than butt touches I think that is ours.  

We held hands during the IVF process, during doctor’s visits, P’s delivery, in the hospital rooms, at St. Judes, and during her final days.  We held hands walking down the beach, walking down the aisle, walking through the woods, and walking up a snow covered mountain in Montana.  We hold hands all the time, and it may be due to my long stride and her short legs so that we stay together, but nonetheless that’s just us.  She held my hand the other night on the drive back from dinner and it was perfect.

There wasn’t anything super special about it.  We were just driving back on boring 81 listening to the Lumineers and needing nothing more than each other for a few minutes.  I don’t know why it was special but it was.  I didn’t want to let go and I didn’t want the ride to end for some reason.  Car rides aren’t as exciting without P, but all the good times holding her hand rushed through my mind and just made me happy.

Penelope learned at a very young age that hand holding was our thing.  One of the first pictures in the NICU is of all 3 of us, P holding our fingers and the caption saying, “We will make it through this together.”  I held little bit’s hand almost the entire ride back from the beach, shoulder pain and all, just to let her know we were going home and it will be ok. 

It may be Valentine’s Day and I might feel a little sentimental, but I believe in holding hands.  It might not mean much at the time, but be there for your wife, your husband, your kid, or whoever.  Just be there with them, hold their hand, and enjoy the moment of doing something together. 10 bucks says you are probably smiling when you are holding hands too, and that makes it that much better. One day, sadly, you might just miss something as simple as holding hands and just wish you could have one more time.

The batteries died...

     Sleeping with a sleep sheep is probably not the most manly thing, but it is just one of those things that I will probably do the rest of my life.  That few minutes of Twinkle, Twinkle Little Star sometimes is all that keeps me from losing my mind in that time where the real world takes me to dreams.  Silence is your #1 enemy when you’ve lost a part of yourself.  That silence is filled with that missing piece and everything that reminds you of them.  Last night the batteries were dead and for a few minutes I realized I probably wasn’t going to get any sleep. 

     A few moments later I noticed those voices no longer wanted to make me cry until I made myself tired.  Those voices that usually keep me up until middle of the night put me to sleep.  The pictures and the silence wasn’t the enemy.  The internal war with myself will never be won, but I’ll take a few wins in the battle category though.

     Taking something negative and turning it into something positive isn’t really what I’m talking about.  It’s more about using all that love and energy that we poured into our little girl to keep fighting those battles so others don’t have to.  Book donations, St. Jude’s donations, medicinal marijuana advocates, rare disease awareness, and this blog have helped us all not dwell on the sadness, but the smiles.  Helping others in turn helps yourself.  It isn’t about Facebook gratification, pictures in the paper, or everybody knowing your name for us and those families doing the same.  It is all about doing what you can for the situation you are in.  Her diagnosis was never her definition; our situation won’t be ours either.

      Life gave us a shitty situation.  It all hasn’t smelled like roses, but it doesn’t have to leave us up the creek.  We’ve got our paddle and her name is Penelope.  She kept us afloat before and she will always steer us in the right direction.  Batteries can be changed and the sound we all fell asleep to will be there tonight.  Another battle will come and another fight of the thoughts in my head will happen I’m sure.  Maybe I’ll let the whales or running water take my mind away from all the negative…….but who am I kidding, Twinkle Twinkle Little Star will win…every time.

All talk No Walk

     So many people these days want to bitch and complain about things.  They want to rant and rave about how something isn’t done right or something is wrong with the world that we live in today.  But usually that’s where it stops.  ALL TALK NO WALK.  People aren’t passionate about very many things anymore.  We have become complacent in things around us and are just ok with having an opinion.  You have to fight in this life for what you want.  Contrary to popular belief, life doesn’t owe you anything, you have to earn it.

Be passionate about something, be passionate about anything, but just get off your keyboard and do something about it.

     There are many friends that I am honored to know that are passionate about something.  Too many people want to complain about the life that they are in, but don’t do a damn thing about it. I have friends that are fighting to help get people medical marijuana on the Capitol floor.  I have a friend that left her job in order to continue the fight for research and awareness so her precious baby girl can grow up in a better world.  I have a wife that speaks out against ignorance and fought so hard for my baby girl that I felt at times I wasn’t doing enough and made me work harder.  I have friends from college that helped put books in hands of kids in inner city Charlotte.  I got to do and be a part of so many things because of Penelope.  I won’t ask what you’ve done lately, because chances are you are asking yourself.

     I’m passionate about my kids learning and understanding the world around them, not just what some data says they should do.  I teach them empathy through St. Jude’s and open their eyes to what is outside of their little bubble in order to make that bubble bigger or even nonexistent.  I preach to my football players about work ethic and drive.  I walk the walk though.  I read, I get better, I workout when I don’t want to because if I don’t then I’m just another person talking about something.  As a teacher and a coach I have a great platform to express my passions and pass it along to others.  Everyone, no matter the road you’ve taken, has an opportunity, you just have to take it.

I’m just tired of people complaining all the time and not doing anything about the situation.  I believe in one simple statement that I heard my man Brigham Lyons say.

 “If you don’t like your situation, get up and do something about it. That’s on you.”  Simple as that.  

Sit this one out....

     Truthfully it sucks to miss out on things.  When you lose your little girl, you lose opportunities that you don’t think about, but life smacks you in the face with them to remind you of all those emotions you try to hide.  The Daddy Daughter dance is one of those that hit me hard this week.  What hit me harder are those little girls that looked at me and said “I’m not going,” and I had to reply, “well I’m not either honey, we’ll be ok, there will be more dances.”

     I cried as I turned my back to walk away from their table.  I don’t know if there will be any more dances.  I don’t know what the next hour holds much less a year from now.  I want to yell, scream, complain, and yell some more about how life isn’t fair and pisses me off.  I want to be pissed that there are things like a Daddy Daughter dance and that I have to sit from afar and just watch it happen.  I want so bad to put my fist through the noses of the dads that don’t go and have the chance to.  I want to cry because all I want in life is one dance with my little girl and knowing I’ll never get it.  I want to sit and be mad that something took her away and took these opportunities away from the both of us.  I want to do all these things over and over and just destroy something because I’m destroyed on the inside.

     But I can’t. Not because I don’t need to, but because I won’t let that side of me win.  So, I just write about it and act like it will go away.

     People fight their own battles every day.  Some wish they could tell a relative one more time that they loved them.  Some kids grow up wishing they had a Daddy to take them to things like a dance.  That’s just how this life goes.  It isn’t fair, and we are allowed to be mad about things.  What we can’t do is let it ruin those good things.  As much as it hurts, I still want to walk in my classroom and let my little girls tell me about how dressed up they got and all about their nails getting done.  I want to hear it because it was taken away from me, not them.  I can be bitter all I want but it isn’t going to change the fact that they had a great time, and it isn’t my place to take that away from them.  The look in their eyes and excitement in their voice reminds me of my Sweet P.  It isn’t about what could have been, but what was and how lucky I was to be a part of it.