My Favorite Thing

                Yaya and Zouk at 730 am.  Now that freaking song is stuck in my head all day.  If you don’t know it, don’t learn it.  I usually pay absolutely no attention to these, but P was stuck on it so I just started watching.  Maybe it was P’s way of saying Daddy you need to see this.  Yaya and Zouk taught me about my favorite thing.  My favorite thing is right now.

                Yaya and Zouk went on an adventure this morning and every time they did something new, it was Yaya’s favorite thing.  It started to piss me off that every 30 seconds she said, “This is my favorite place to be!”  It wasn’t until Zouk got mad too and said not everything can be your favorite, you have to pick!  Then that little nugget of SPROUT wisdom came through.  She responded with, “It is my favorite because it is right now, I just enjoy being here with you; so it’s my favorite. I don’t have to like it all the same, but I treat it that way.” BOOM

                 Well thanks for making me think you little weasel looking creatures.  Now my friends think I’m going crazy watching Sprout for fun, but secretly it is on their TV right now too.

                Is my favorite thing getting 2 meds ready and flushing P’s central line before I even get my morning coffee? No, it sure as hell isn’t.  But is my favorite thing seeing that little face staring at me while I do it? Yes, it sure as hell is.  Is my favorite thing having to feed my daughter through a G-tube and then frantically stopping it because I forgot to cath her? No, it actually sucks.  Is my favorite thing playing with her belly and making her move her arms because it feels good.  Yes, yes it is.  Is my favorite thing laying on a couch not wide enough for me while my daughter can’t get comfortable and rest because she has nerve pain? No, it actually makes me cry.  But holding her hand the whole time and her squeezing my finger can’t be compared to any feeling in the world. 

                We can live a very negative life if we choose.  If I wrote everything a special needs parent has to do in a span of 24 hours, you’d probably agree it would be way easier to just say Screw it and be pissed all the time.  I have to find my favorite things and live off them.  For me, it doesn’t take away from any special moments to say that this is my favorite time.  Right here and now is all I can ask for.  This little slobbering, bubble blowing princess has showed me how happy you can be just living in the moment.  That is all she knows.  She doesn’t care if she’s doing the same thing other 2 year olds are doing.  She is perfectly happy sitting in her bean bag, watching her cartoons with her Daddy holding her hand.  That’s her favorite thing.  It will also be her favorite thing when her Mom blow dries her hair and gets her all prettied up later today.  When her Aura takes her for a walk that will be her favorite thing for those 2 miles. 

                If life was more favorite things, I think we would all be a lot happier.  I still cry, I still get mad and cuss, but that’s part of it.  I don’t ask God why anymore, I don’t think ahead, and I sure don’t take anything for granted.  Instead I just ask for more favorite things, look for them now, and love every second of it.  

Facebook and Fundraisers

           I’m the last person to ask for help on anything.  You can ask the people I work with or my family.  They get frustrated because they are some of the most caring people in the world and when they ask I just give them the “I’m ok, we will be fine.”  That’s just how I have always been.  My parents raised me to take care of my situation because they always did.  You find a way to make it work and just do it.  It isn’t that I can’t ask for help, I just don’t. I’ve always been on the other side of these things.  I’ve always been the one showing up to mow yards, take out the trash, put money in an envelope, or especially delivering Mama’s food.  Brit would sign me up for the craziest shit you have ever heard of and pick me up in the van with no time for me even to ask “what am I doing now?”  I always wondered why? Of course I would have rather been riding my bike over on Oak Hills or playing basketball, but somebody needed help and that’s just what you did.  Brit and my parents exposed me to all sorts of situations that at the time I didn’t get it, but now I see the importance of what I was doing.

I never thought about being on this side of it all.  Now that I am, I see it from a totally different perspective that isn’t exactly overwhelming, but I don’t have enough time to thank each person for what it truly means to me.

Facebook brings people out of the woodwork.  Usually I mindlessly scroll through Facebook looking at stupid comments on My Greeneville, who has baby Daddy drama, and my favorite Jason and James Horne posts.  I rarely give any attention in my life to what is on Facebook after I close the app.  I really can’t stand scrolling through there more than a couple times a day.  Just ask Ellen, I usually make fun of her for looking at the same stupid stories and creeping comments for the 20^th time that day.  Lately that has changed.  Facebook was originally made to connect people, and lately that has done more than connect, it has brought people together for a greater good.  Through Penelope’s Path, almost 52,000 people saw her story.  That blows my mind.  For even a split second, my little girl was on the minds of 50,000 people.  Over 1200 people changed their profile pic to purple.  Just for one little girl and one little family.  So now instead of mindlessly scrolling through Facebook, it gives me a purpose and reason.  To hear I love you from someone in my past, to hear that Sweet P is beautiful, to hear that they care, helps me stay sane.  That 10 seconds it takes to write a status or a comment to one of her posts brings 10 seconds that I can’t be upset.  So even if I don’t comment or respond, I promise you I see it.  It might be at 2am when I can’t sleep, but sometimes that’s the best time.

Fundraisers are another story.  What has been raised for my family and for research has been overwhelming.  Through Tshirts, bracelets, and just simply donations have made one aspect of this life we live for lack of better words, better.  I can’t even begin to thank those that have donated or wear a tshirt with Penelope’s name on it.  It isn’t just money.  It isn’t a number in an account or a cash register.  It is a plane ticket for a sister in law to come be with her sister and niece that is needed more than she knows.  It is a hotel room 1 block away from St. Jude’s that an Aura and Pop can stay for a couple nights and be close to a little girl that means more to them than anything.  It is a meal that family can sit together and be happy in the moment over some pretty incredible barbeque.  It isn’t a check that goes into the bank, but a cup of Dip N Dots that P gets to try on a trip to the zoo with the Ritchey’s.  It’s part of a plan for a room at the beach for a night so P can feel the ocean breeze and her Mama can carry her into the ocean with a smile on her face while her Daddy takes blurry pictures because he is too in the moment to focus.

 Your donation to a research project at St. Jude’s is even more than that.  It is a family’s peace of mind that behind those doors that say research, somebody is able to try to find a way to make not only their child better, but more after them.  It is a room at the Tri Delta, Ronald McDonald, or Target house for their stay.  It is a bed that although isn’t their own, is a place they don’t have to worry about fixing while sitting in a waiting room.

I don’t even know what amount or where it even all comes from.  I don’t even know some of the people that have changed a profile picture purple or sent a message.  It isn’t about that.  One dollar is more than cents, it is part of a memory.  One profile picture is more than just a few clicks, but part of a movement for healing and support.  Thank you isn’t enough.  That is why we share her pictures, he adventures, her bucket list.  That is why we share the bad news, the struggles, and the hurt.  It is because we are all connected in this.  When things like Facebook and Fundraisers happen, don’t see them as “likes” and dollars.  Measure them in the ways we do; Memories and Opportunity.  

I Don't Know What To Say

“I don’t know what to say” is usually a part of most conversations I have now.  “I can’t even imagine what you are going through” usually follows it.  “I just want you to know I’m thinking and praying for you all” usually ends the message.  People closest to me and those whom I’ve never met both use these phrases.  My family even says it.  Those words seem so redundant and I’m sure when you type them or say them you say it in your head, “I bet he’s heard this a million times, but I don’t know what else to say.

            I just want you to know that it is ok.  It is enough.  I don’t want you to know what to say. I don’t want you to imagine this. Knowing that you are thinking about us right now means more than you know.  It is ok, I promise.

            One of the best doctors in the world didn’t know exactly what to say either and he’s the freaking man when it comes to these situations.  All Dr. Armstrong was left with was, “I can’t cure this.”  So if the best in the world couldn’t come up with anything more, I don’t expect you to.  These situations suck worse than anything.  Nobody wants to see a child sick or hurting, especially a little one that has had to fight their whole life.  The English language, as complicated and intricate as it is, doesn’t have a magic combination that is made for these situations.  Cancer takes the words out of your mouth.  It has a funny way of taking a situation that seems like it needs words of encouragement and leaves you speechless.  Truthfully, as a Dad in this situation, I don’t know what to say either.  All I can tell Penelope is that Daddy loves you.  I can’t say magic words to make her feel better.  I sure as hell can’t sing a song that helps (that usually causes more crying by anybody hearing it).  I couldn’t soothe her for 2 weeks when I picked her up screaming by saying softly “It’s ok baby, shhhh”, so I can’t even imagine someone seeing the situation from the outside would have anything either.  It is ok though.  Chalk up another F you to cancer for taking everything we know we should say and leave it on the tip of our tongues.

            I don’t want you to imagine this happening to your family or your little one.  I don’t wish this on my worst enemy.  You don’t want to think about sitting in the back room of E Clinic to hear your little pigtail princess has an incurable cancer that they don’t know very much about.  I don’t want you to have to sit in front of an MRI to see these little white glowing masses that are taking over your child’s body and you can’t do anything about it.  I don’t want you to have to look at your baby every night and when you kiss her forehead wonder if this is the last time you will get to do this.  I don’t want you to have to make a bucket list of things that you’ll never get to do again.  So now that we are both crying, STOP.  I have to stop myself too.  Life isn’t about dying, it is about living.  So instead of imagining that, just live.  I can’t imagine months or years anymore.  I have to live and do it now.  So that’s why you shouldn’t.  We take it hour by hour day by day.  If all I did was imagine, I might miss out of on something.  We just have to do better with what we have in front of us.  Imagining doesn’t get us anywhere.  I can imagine a different life, but that’s not going to help anybody.  So it’s ok, I promise. I don’t want you to imagine this, because it isn’t going to get anybody anywhere.

            I can honestly say that thinking of us, praying for us, or sending good vibes our way is enough.  I know it doesn’t seem like you are doing anything, but you are.  I was talking to a Dad about the different prayers at the football field, softball field, baseball field, and the countless prayer lists people have added us to.  He said it best.  “Damn man, I couldn’t imagine the strength that gives you to go through this junk.”  I started to think about it.  I know we weren’t there for those prayers, but I felt them.  Seeing the pictures of them hit me straight in the heart.  How could I give up and give in when all these people are behind us?  The answer is you can’t.  It isn’t about letting someone down, it is about showing them that there is power in people coming together as a community, as a team, or even as a family and showing that they care.  I don’t care what your religious affiliation or even if you believe in God.  God didn’t do this and there is no “reason” for this to happen, but what has come from this is bigger than any one of us.  That you can’t deny.  Dr. Dan prayed with us continually before we even knew what we were getting into.  I listened to Mrs. Gail pray for her in our makeshift bed at Lebonheur that was one of the most beautiful prayers because I know it came straight from her heart to ours.  Mr. Ritchey gave us strength to go to St. Jude’s with his prayer for us as a family.  Coach Hollowell and his wife Sarah surprised us at St. Jude’s on a night that I was really struggling.  Instead of sitting there crying and feeling sorry, they gave me an hour of good stories and ended with a prayer that reminded me what was important.  I don’t know all the words that have been said either in prayer or in just simple thoughts about my little girl, but I can tell you they matter and mean more than anyone knows. 

            It is a very easy cop out to say “thank you, I appreciate it.”  Honestly, that’s all I’ve got.  I talked with a Dad down there from Indianapolis who was fighting for his last chance with his little boy.  I asked him how he handled all the love and support.  Well after we talked for an hour, all we came up with is, “Thank you, I appreciate it.”  Cancer took my words too.  It kills me that I can’t say more, but I am trying to figure out all this too.  Those words come from my heart, and I promise if I had better ones I’d say them too.  It really does mean a lot and many times I get a message or call with no more than “I’m sorry bud, I’m thinking about you and am here for you,” is really what I needed to keep going. 

            Cancer takes a lot from us.  It will one day take my little girl.  What it can’t take is a community and family that has come together for a greater good.  It can’t take my fight and sure as hell won’t make me quit.  It might take our words from us, but what words it does leave us with are meaningful and do matter.  Sitting on a bench in the middle of St. Jude’s can be a lonely place.  Let’s be real, sitting anywhere right now in this situation sucks.  I can’t get too down because somebody somewhere is thinking of us and I promise, that’s enough and it makes that moment ok.

My letter to Cancer

Dear Cancer,

   First off, F you and all your different types.  I've always seen you show up around me.  My grandfather fell to you, and many family friends have battled you throughout my life.  It wasn't until you invaded my precious little girl that I really started to hate you fully.  I've always known you could destroy cells and take over people's body.  There are a lot of other things I have learned about you while our family has been at St. Jude.  So before I go any further, just know you are getting this letter from a Dad that is stronger than he has ever been before, so when I say I will fight, you better pack your lunch because I don't plan on ever giving up.
   I will admit, you scared the shit out of me at first.  When I heard the word Cancer and my daughter in the same sentence, I cried.  I cried for days because you made me feel helpless.  I have always felt for those who you have invaded, but this was a different kind of feeling.  What I didn't know is what I would learn from you.  I learned how strong my 22 month 16 pound little girl is.  Even though that you took her legs from her, she still smiles, still loves Minnie Mouse, and still has enjoyed doing things like going to the Zoo and seeing Graceland.  You have taken one of her favorite things in kicking her legs, but she's still looking at her Daddy with those beautiful eyes saying "I'm ok, lets go have fun, screw this Cancer."  I learned how strong my wife and I are together and that you might break us down at night, but when it comes to it, we don't even think about you and do what we have to with and for our little girl.  I learned that through writing I can clear my head and not let you consume my thoughts.  How you like them apples?  You might be fighting against us and you might win one day, but you can't make us quit.
   I learned that there are people like Dr. Armstrong and Dr. Dave.  I know for a fact if it wasn't for them being in our corner, we wouldn't be at the place in our hearts and minds that we are now.  They fight you every day and have a pretty dang good record against you.  They are amazing men and with their entire staff, will continue the fight for all these precious angels that come into E Clinic.
   I learned the strength and grace of children like no other.  You might make them wear masks outside to ward off infection, you might take a limb or even their hair.  The one thing you can't take is their souls.  I don't care what you do, but every kid sitting there is giving you the proverbial middle finger and fighting with more strength than you'll ever have.
   I know you have learned some things from Penelope and her soldiers as well.  You probably thought you could just set in her brain and spine and take over without a fight.  Yep, you are an idiot.  She continues to do things you say she can't and will to the last day.
   I bet you didn't think a community would surround our family with love and prayer to the point we cry out of happiness and our hearts being touched as much as we do sadness.  Tshirts, profile pics, hashtags, the high school lights, and hundreds of messages have poured out over the past weeks to show support of anything that stands against you.  Some people have never met Penelope, but have gained strength in their life through our fight.  There have been more prayers sent to the Man above than you have cells.  God's army is stronger than your army of cells any day.  You might test my Faith, and truthfully you shook it pretty good.  All I did for weeks was ask why? I still do, but knowing we have an army of people behind us praying will only get me through this.  Get you some of that.  
   I bet you didn't think high school kids would turn against you like this.  I bet you didn't think that teenagers, who are normally consumed with other things, would stop and band together for this little girl.  Through prayers at ball fields and at home they have come to realize the evil in this world should be met head on.  They have put P's on wristbands, banners, helmets, gloves, tweets, statuses, and most importantly in their hearts.  One of them one day might be affected by you, but they see the strength that it takes and will be ready for you.
   We have a new normal that is a part of our daily lives thanks to you.  You have taken a possible future away from us, but you can't take the present.  You have made us more alive and in the moment than ever before.  I notice everything now.  I cherish every moment.  People have come together for a cause, and that in itself has power.  God has been present this whole time, we've just had to look for him and search for him.  I don't believe everything happens for a reason, but this is our journey and we although we don't have to accept it, we can make the best out of it.  When life gave us this lemon, we made orange juice and had you question how the hell did we just do that.  I want you to go away forever, but I know there is still work to be done here at St. Jude's for that to happen.  They will learn from my little girl and use that against you.  Cancer you will lose one day.  I'm a mess inside and will be for a long time.  I cry every day about something.  I'm also Penelope's Dad.  That means Pigtails and steel will not let you take everything.  We are too strong for that.

Sincerely not yours,

Andy McCall, better known as Sweet P's Dad

Angels

   I teach for a living so I see kids do some pretty incredible things.  Usually I stick to the funny stuff like my 2nd grade -isms I post on Facebook.  Every now and then you see a kid in school do something that really touches your heart.  Every now and then you see some little shit do something that makes you want to smack them.  I don't care about the corporal punishment issue, but a good smack to the back of the head wouldn't hurt every now and then.  Anyways, kids can show you some pretty amazing things if you would look up from that screen and pay attention.  There is still good in this world, and as far as the last week goes, I've seen a lot of angels in the midst of all this.  These kids here are walking angels.  They might not have wings, be glowing, and floating above us as we usually think.  Instead they come with shaved heads, disabilities, wheelchairs, IV pumps, and masks on.  They all have one thing in common.  Their souls shine through brighter than anything I've ever seen.
   These kids see no disabilities.  They see nothing but another kid.  I see a wheelchair, they see a place they need to pull a chair up to to sit next to them.  I see a partly shaved head with a scar from brain surgery.  They see that and compare theirs.  I see a mask.  They see a chance to look like Batman and wave at the kid next to them wearing the same one.  They don't give two craps about what is going on.  All they see is another kid going through what they are.  It is the most unreal sight I have ever seen.  The most awkward situation I have seen is where two kids just stared at each other because they didn't speak the same language.  They looked at each other weird then just pointed to the game they wanted to play and started to play; the language didn't matter. These two boys were just happy to have someone to play with.
   The one example that sticks out in my mind is a boy the other day walked in real slow, couldn't move his neck.  Made me think of one of my "father figures" Mike who can't move his neck like that either. (This kid might be stronger than him haha).  This boy about 12 had a bigger body but his head was much smaller and you could tell he had major surgeries on it from the scars and such.  I only describe him because of what happened next.  A little boy, probably 5, came skipping in the clinic all fast like most kids do.  He got about 3 feet from this other boy who was struggling sitting down on his own.  Instead of staring at him or watching like most young kids do, he waves at him and says Hey! and stops to sit next to him and play while he waits on his Mom to check them in.  He saw no disability.  He saw somebody that he wanted to talk to and looked nice to sit next to.
   These kids have changed the way I look at all this just by being children.  They know the evil of this world, they are freaking living it, but they continue to do good.  They don't judge, they say Hey!  They don't walk the other way, they walk up to them.  They don't stare, they talk.  They don't scoot over hoping they don't sit next to them, they make room so they can.  Now which one sounds like adults and which one sounds like what should be happening?
  These kids don't want pity, they want somebody to play with.  One day I'll read this and smile about all these little angels with their shaved heads, wheelchairs, and surgery scars.  Most of them don't even get to go to school, but they have been teachers this whole time.  Souls aren't disabled.  Souls are forever free and just waiting for someone to say Hey!  They only become disabled when you treat them that way.

I Can't Protect Her From This

  I can first and foremost only say Thank you for all the words of encouragement, the prayers, the thoughts, the calls and texts, and most recently changing your profile pics to #purpleforSweetP.  For all that I could never repay all of you, but I can promise you I'll be there for you, whatever the reason.
 
   Most of the texts and calls include something like "I have no words" or "I can't imagine".  Truthfully, I don't want you to ever imagine a hell like this or even fathom words in your head about this situation.  I'm living it and the words run through my head 24 hours a day; you don't want any part of this.  You don't want this in your life.  I'm sure seeing our situation from your seat right there is bad enough.  Hopefully the research that comes from Penelope's cancer will keep some other Dad from sitting in this chair feeling this pain.
   I can't put into exact words the feeling I had Friday afternoon.  We sat there in that room with Dr. Dave and Dr. Armstrong and listened to their diagnosis, but I might as well been on freaking Mars.  I was there but all I could do is look at Penelope in a way that I never have.  This sickness isn't going away. As I watched the words "I can't cure this" roll out of his mouth, it took a part of my soul as it went in one ear and out the other.  I heard him say it, but my brain was like Dikembe Mutombo in those commercials, "No, No, No....Not Today." I had to keep my composure to talk to him about our side and our thoughts, but inside I was done.  I felt a bead of sweat roll down the side of my face as he talked about the MRI.  I felt every single skin cell it touched hoping this wasn't some sort of hot flash that I was going to be drenched in. I felt my stomach turn and churn like that taffy machine in Gatlinburg that just pulls and turns, pulls and turns.  My eyes were focused on the computer screen, but I was looking hours, days, and weeks ahead.  I saw the tumors, but I saw our future too.  I started breathing heavier and slower, or was it faster and lighter? Hell it was probably both.  All these feelings I just described hit me in about 45 seconds.  I had to get my shit together though and the Man inside of me said "Quit being a bitch and get this done."  It was my turn to talk and I felt like nothing wanted to come out.  Again something inside of me kicked in and I said my spill.  We made a decision and we felt good about it.  It all seemed so fast.  He is an amazing man and I don't think I could have handled it as well if it weren't for him, but that room in the back hall of E clinic has a part of me in it and always will.  
   A father is supposed to protect his daughter and I can't do that.  I have not failed at it, I just can't.  Feeling helpless is what hurts the most.  I can give her pain meds.  I can keep her comfortable. I can whisper I love you in her ear all day.  (Believe me, I do all those around the clock.)  But I can't keep this cancer from growing and spreading until one day it takes over.  I can't protect my little girl and that breaks my heart every time I look at her.  I am used to being in control, and not having that control puts me in a mild panic attack about 47 times a day.  Every time she cries I know it is a pain that I can't do anything about.  Every time we move P she cries. Every time I go to pick her up, it hurts her.  You can't imagine the pain I have knowing just giving my little girl a hug makes her cry.
   I can now process all this, and through writing I can at least get it out of my head so I can fill it up again with more questions and concerns.  I'm starting to do better though.  Even in 24 hours my mind has started to be less sad and fill those voids with memories and the happy times.  If I'm sad all the time, we will miss something.  I wouldn't be able to forgive myself if I missed something, so screw being sad 24/7.  My little girl needs me during those times.  She can't have a sad Dad.  She needs a Daddy that will take care of her and protect her as much as he can.  That I'll do.
 

Penelope's Path

   This journey makes you feel like you are hiking in the middle of the woods. Alone with your thoughts, but surrounded by so much more.  Every step you take might take you closer to the "end", but it also takes you farther away from what once was.  My trail is a waxed tile floor accompanied by hundreds of other hikers making their way through their own personal Hell.  My sky is filled with lights and tiles. All rectangles, all the same.  To my left are people with their own terrible story. Instead of taking a break by the creek, they are sitting in wheelchairs and plastic wagons, waiting on the next breath of energy to make it to the next appointment.  To my right are trees painted on the wall with the stupidest animal faces I've ever seen.  Why is the lion the same height as that monkey with too long of arms?  Somebody bought the wrong sticker pack and said Screw it, nobody looks at these anyways.  Well I do Mr. Maintenance man; I have to, every single day.
   Elevators are like the one escape you get.  When the door closes, you take a breath.  For that few moments, you can just breathe, stare at the numbers, and not give a dang what just happened.  I don't know of anyone that really thinks hard in an elevator. You just enjoy the ride.  When that door opens, it's like a whole new world again.  Now this world still sucks, but it is at least a new part of the path for a few moments.  There are still Dads pulling wagons down the hall, nodding to each other with that sense of "Hey man, I know how it is." Everything around you, as happy as they try to make this shit show, reminds you that nothing about this journey will be enjoyable even on this floor.  I'll give it to St. Jude's though.  The aquariums and play centers they have going on are legit.  At least waiting to get your next diagnosis is colorful and active.  The setting of this journey isn't exactly hiking in Glacier National Park, but it could be worse.  This place could not exist.
   I saw this on a shirt for Infantile Spasms, It was pretty cool and it leads me to my next thought.  "I might not like the ride, but my tour guide is pretty awesome."
   Before me is this little girl in pigtails smiling at her little turtle that my buddies bought her.  She doesn't care where this path takes us; she has all she wants in her little world.  She has us, her cartoons, and her few stuffed animals she loves.  She looks up at me and still smiles to this day.  No brain tumor, spinal tumor, nodules, or abnormalities can take her smile away.  She doesn't see the pain and BS that this journey takes us through because that's all she knows.  She doesn't know it isn't supposed to hurt or that you aren't supposed to get poked and prodded all the time.  She screams in pain, but knows that her Mom and Dad will be there to do everything they can to take it away.  She loves her Grandparents because they are on this journey with her.  Penelope hasn't had it easy, but that smile would tell you different.
   This journey will make us stronger.  It sure has beat the hell out of me in the process, but I know it is nothing compared to what my Sweet P endures daily in her little world.  I have to learn from her.  I need to be content with what is on this journey with me and just ride it out.  I have my wife that helps take the pain away.  I have this journal that lets me decompress.  I have family and friends that are amazing and have gone far beyond what I could imagine.  I need to sit and enjoy the moment like P does with her turtle and her cartoons.  Yes this sucks beyond comprehension, but it is life.  It is my life and I will not let it beat me down.  Penelope has shown more strength in two years than I have my whole life.  I have kids in the classroom that deserve my strength and kids on the football field that need life lessons along with their run plays.  I will be better and enjoy the moment.  I didn't pick the wrong path. Penelope's Path picked me, and I have to keep on truckin. That's what she deserves.

End of the week

Most people look forward to Fridays.  I never have because I love what I do and can look forward to most days.  I think the people that live for Friday's have to hate their lives.  You are wasting over 50% of your life doing something you don't enjoy.  Sucks for you.  This week I'm the total opposite.  I don't want tomorrow to come.

  Tomorrow is the day they lay it all out in front of us and we have to make some decisions that ultimately will change our life.  Penelope doesn't have many options, and the ones they have given us aren't exactly great.  They don't have a chapter about this shit in the adulting handbook.  If they did, it would be called "Shit you don't want to have to do" or "Hopefully you can skip this chapter".

  We joke about adulting all the time.  One of my good friends Abby and I made some adult decisions about a car situation a few months ago with her dealership and my coaching staff trip.  We kept looking around for an adult to make the decision, but there we were, all grown up and being bad ass adults.  If only I could have stopped there and chalked that up for my bi-monthly adult decisions. 

  I usually don't get phased by much.  My parents raised me to make decisions, see things through, and do what you have to do.  My Mom and Dad were great examples of making things work, and because of that most decisions I have had to make have been easy for me.  Tomorrow won't be easy.  I'm more concerned with not losing my shit in front of all those doctors and being able to actually talk more than I am picking choice A or B.  Or if you had Mr. Meyers crazy ass for science at GHS, you always knew 9 was D and 10 was C.  If only it were that simple.

   When I look back on this post one day.  I know I haven't portrayed the anxiety that I have.  This hasn't helped me be calm about a decision, but at least now I can say I have processed this part of the journey.  It won't help me sleep, it won't keep me from crying, but I know I can do this.  Hell I have to, that's just part of life.

Nobody should have to make decisions like this, especially on a Friday.

Waiting

   We do a lot of waiting.  Waiting on MRI's, waiting on meds, waiting on doctors.  Hell we even wait to get on the elevator an abnormally long amount of time around these places.  Waiting does a lot of things for me, and really mad isn't one of them.  I stopped getting mad in waiting rooms when I saw this one lady pitch a fit that was totally uncalled for.  Right then I figured it was best for us to just put on a smile and deal with whatever comes.

   You get to do a lot of people watching, which has become a past time of mine it seems.  I see a lot of people pick their noses, but I'm used to that teaching 2nd grade.  Mostly people are glued to their screens, so I sit a lot of time making up in my mind what they are looking at.  I can't stand looking at my phone or something for more than 10 minutes in a waiting room, I don't see how people do it.

   Fish tanks have been my recent calming method.  I could sit and look at their big saltwater tanks all day.  I don't know what is better, watching the fish or watching the kids come up to the glass and the looks on their faces.  But don't tap on the glass kid, they don't like that shit, didn't you see Nemo?

   I'll tell you though.  Sitting in waiting rooms around here, you meet some pretty interesting people if you aren't staring at your phone.  Today I met one of the private welders for the owner or Bass Pro shops in Missouri.  He built the handrails in the one in Pigeon Forge, so you could say he's pretty important.  The other day in the fitness room I met a Dad that St. Jude's is his son's last hope.  He's been in hospitals for 18 months solid.  Hell I thought in and out for 2 years was rough, that guy looked about 55 and he was 32.  

   All I really say is when you are sitting in a waiting room, just take a minute and don't get upset.  I could get real pissed most of the time, but what is that going to help?  I only write this one because I look at what goes on around me and I don't want to forget the people that are waiting with me.  They are part of my journey.  To the Dad waiting 6 hrs for renal scans, to the mom passed out with her son in her arms, to the guy that's going to be his son's stem cell donor, I'm right there with you and I appreciate you waiting patiently with me.

Why I do this

This is probably the first one you'll read. I'll tell you though scroll to the bottom for the one named THE BEGINNING and it will make much more sense.  I'm going to tell you right now. I cuss. I get pissed.  I really don't care.  If you can't handle a few choice words, then that little red X is for you.  I don't get to hit the little red X and start over.  I'm eyeballs deep in this and that's just life.  I have my moments I cry, and other times I'm just pissed.  I really do appreciate the prayers and knowing all these people are spending just a moment thinking about my precious little girl and our family.  Personally, I'm at a crossroads, but I haven't lost the faith.  I'm just standing in the middle of the road trying to figure out what is next.  The donations and such have been more than I could ever ask for.  It has made getting our family here to be with us much easier and without something else to worry about.  Not having to worry about finances through all this helps, and I know this firsthand now.  Thanks again for everything, whoever you are.

I'm a Dad, I Got This

   I totally understand how the stigma of helpless Dads got started.  I totally get that in most situations, as in mine, that the Mom does most of the caretaking and hospital type duties in relationships and with children.  I fully understand how a screaming child is seen being more comforted by their Mom than Dad.  The rare zebra striped unicorn of a Dad that knows what he is doing can be found, and I'm one of them.
  Just maybe, I have this fucking situation under control.  This morning I about lost it.  Penelope has been having some immense pains and there is no consoling her.  It doesn't matter what you do, you just have to ride it out.  Sometimes 5 minutes, some are 30, and some can be an hour long.  This morning was a 30 minute(r).  I had to go check in at 730 and she was whining, which most kids do early in the morning.  It continued to get louder and louder as we got to registration.  By the time they put the armband on her, it was a full out shitfest.  I tried all our usual pacifiers, but nothing worked, so I knew I was in for a doozy.  This part I'm ok with.  Her screaming doesn't bother me much until about the 3-4 hour mark, and then it's time Daddy lays the law down about being quiet.
  The part that gets me is every person there asking if everything is ok and offering suggestions to quiet her down like I can't handle it.  I walked into the hallway and started making laps around the registration room so the ladies could at least check people in without P's wonderful high pitched scream.  Four ladies walk past saying Oh Dad are you ok, do you need help? Then a lady from a desk literally 30 yards away yells and says, "Would it help to pick her up and soothe her?" I looked and said without hesitation, "You have got to be shitting me."  Four more people asking by the time I got back to the room if I needed help or what I should do to help her about blew my lid.
   I shouldn't get mad.  Most Dads can't walk this life. In less than 2 years I've gotten a crash course in nursing and can do a lot of things that most in nursing school haven't learned yet.  I joke with one of our favorite nurses back home that she can just page Dr. McCall.  The scary thing is I can probably deal with most stuff that happens.
   I'm sorry that some really good people, some really good friends, turn out to be crappy Dads.  Sadly, it happens.  It makes me want to choke them simply because it puts Dads like me in situations like this morning.  Poor pitiful Dad with the screaming kid that won't stop.  He must not be able to handle it.  I don't say this or post it on Facebook to get people to tell me I'm a good Dad.  I'm doing what you are supposed to do.  It is what Penelope deserves and it is what she will get from me.  If it is any less, then yeah, lady from 30 yds away, it might be time to help.
   But maybe, just maybe, not all stereotypes are true.  I'm a Dad, I got this.
 

The Eyes Above the Mask

   Two little girls broke my heart on Saturday May 14, 2016.  Those two were not my girls. I have no idea who they are or what their names are.  I don't know where they are from or if I will ever see them again.  Strangely, I feel like I know them on a different level.  I feel like I should be there holding their hands right now.
   Both girls were in wheelchairs with their parents at their side.  Both were probably 10 years old or so.
   One was sitting outside with her mother, who seemed to be on the phone with doctors or insurance (story of our life).  She was sunken in to her wheelchair that could have fit about 2 more of her.  She had dark hair and an NG tube that was hooked to some orange juice.  I didn't see her move much as we walked up the sidewalk.  It seemed like a huge task to remove her mask as we were about 100 feet away.  She was probably coming out of treatments, or something like that.
   The other little girl was a little heavy set with blonde hair pulled back into a ponytail.  I probably wouldn't have paid much attention to her except she was surrounded by about 10 people.  Family, sisters, and a couple nurses.  As I got closer, I noticed her talking behind the mask and her eyes were filled with tears.  Her Dad walked beside her as her mother pushed her wheelchair.  I could tell something was going on, but in a way I didn't really want to know.
  I only describe seeing these two girls because they will never leave my mind, ever.
  The little girl outside about brought me to my knees first.  It probably would have been better to say she looked more like a zombie or post-op patient than a little girl.  She just had that look of "They woke me up now let me go back to sleep."  As we got closer I noticed her eyes.  Sunken and dark don't begin to describe it.  There looked like there was no life behind them.  We got about 10 feet away and she sort of turned her head to P's pink stroller.  We got closer, and as we were a couple feet away, she turned her head to look at Penelope.  Almost instantly it went from this blank stare to a meaningful, genuine smile.  Her eyes lit up, you could see her teeth from the grin.  She never moved her body, just her eyes and mouth.  We got right next to her and she looked up at me with that smile.  We kept walking and I noticed she went back to that look of just staring off into the distance as we got out of sight.  I felt my knees get weak immediately.  I'm not talking about getting married knees weak, I'm saying something came over me like never before.  We kept walking towards the entrance and thank God I had my sunglasses on because I'm sure I looked like a wreck.  Those tears came and went pretty fast because I knew I was about to walk inside and take my sunglasses off.  I was about to pull a real D-bag move and just wear them walking the halls, I wanted to keep crying.
  The other little girl, followed by her army of support about took what strength I had left.  P and Ellen were heading back to the room while I dropped off her meds at the pharmacy.  So I was already alone with my thoughts, which isn't good when walking those halls.  I'll skip everything that lead up to me hearing these words because they truthfully don't matter.  "I don't want to do this today. I'm scared and I don't want to wake up tomorrow hurting.  I can't do this anymore Daddy. I want to go home." Those feelings you are having right now, imagining that little girl being pushed by her Mommy and pleading to her Daddy, multiply that by 1000 and that was me.  I saw the pain in her eyes.  I saw the fear. Her eyes above that mask showed what no Dad wanted to see when he looked at his daughter.  I don't know what she was getting ready to do, but I wanted to do it for her. I wanted to walk with that Dad and make sure he was ok.  I also wanted to get the hell out of there before something else happened.
  Those two little girls won't be the last ones I meet here, but they were the first.  They gave me hope and sadness.  They showed me compassion and fear.  They also showed me how connected we all are here.  I don't know if I will ever see them again, but if I do, I hope I can put a smile on my face for them.  They need it. They deserve it.

Entering the Gates

   Emotional would be an understatement. Driving in the gates at St. Jude’s will just about take your breath away.  It’s like entering a place that you are happy exists, but don’t want to ever step foot in. I've always known or heard that St. Jude’s is an emotional rollercoaster, but I must be unstrapped on an upside down ride going backwards. Externally I am ok.  Internally I’m so fucked up I can’t even put it into words, that’s why I cuss I guess.  Ellen cried first, so she gets the prize, but every time I'm alone with P or away from then for a few seconds, I about can't hold it back.

    Everybody here is so nice.  You ask, they do. You ask a dumb question, they smile and make you feel better about it.  Hell even a delivery guy showed us where one of the offices was like it was his job to serve us.  I know that it is part of their training, to be so uplifting, but they've aced that part for sure. 

   The ladies at the front desk have everything covered. The ladies at registration have everything down to an exact science.  When you walk into the clinic, everything is laid out ready for you like you are the only person that matters at the moment.  The lady at the pharmacy the other day was rocking out to Michael Jackson, taking my paper, and acting like she wasn't in a place full of sadness. 

   I don’t like being here one bit.  I don’t want to think about what happens next week when we meet with doctors.  I don’t want to watch my little girl undergo anything else.  But like the people here at St. Jude’s, I will smile, I will do what is asked of me, and go about our business.

SPROUT and my Sanity

P doesn't really watch and focus in on a lot of things, but she seems to notice things on SPROUT more than others.  Slowly I'm trying to get her into Rugrats and the good stuff, but until then it will stay on Sprout.
   First let's talk about the actual people on there.  It takes a special breed of weird to be that happy and demonstrative with your facial expressions all the time; especially when you are working with a chicken and a talking star.  Pre-K teachers are that type of breed.  I respect them 100%, but there's no way in hell I could do that.  My buddies and I talked one time about them being not bad looking at all, but when all you get to stare at are cartoons, you find anything more attractive.  They do have a pretty chill job though. All you have to do is wear pajama pants and act like a 3 yr old.  Not too stressful.  They throw in some Spanish every now and then, but maybe that's just their way of appealing to their Mexican dealer's kids that supply them with Happy Pills.  Either way, that would just be a weird job that I don't think I could do day in and day out.
   Chicka.  Chicka knows a little too much about how potty training is fun and makes some pretty serious diet decisions for my liking.  That squeak makes me want to rip my ears out, but maybe that is why she's on first thing in the morning.  Let's wake everybody up with the most annoying sound we can.
  Caillou.  Caillou doesn't deserve a paragraph.  That little shit is on the same level of giving everybody trophies.
  The Berenstain Bears are the exact opposite of Caillou.  They are the definition of cartoon and should be a staple of every childhood.  The books are at the top of my list.  I could go on and on, but I rank them with the original Teenage Mutant Ninja Turtles.
   The Floogals are creepy as well.  They have 4 ears, They are a bunch of different colors.  To be from a different planet they are pretty dumb.  If they say Whoman instead of Human once they say it 500 times in 30 minutes.  Their daily projects do teach kids about common things in life, but I think a good question from a kid of "What's that?" would do the same and be better than watching this junk.
  Superwings, Sydney Sailboat, and Astroblast I have no problem with.  The episodes really aren't that bad and they have some funny stuff on there.  Maybe I'm delirious by that point, who knows.
  Maya the Bee is a creepy one as well.  I don't mind the theme song and P really likes this one.  But has anybody noticed that Maya's best friend is a dung beetle.  I know the kids don't get it, but just about every episode somebody is rolling in crap.  The dung ball race episode was the best.  I mean who doesn't like a good ball of poop rolling around the forest with all your friends.  The focus on perfecting the roundness of the poop for optimal rolling really took some writing genius.  I could imagine my friends getting wasted and writing this.  Maya is smart though and usually figures out her problems, which is ok with me.  At least she isn't crying to Mommy like Caillou when it starts to rain or something.
   Ruff Ruff, Tweet, and Dave is interactive and other than pausing for too long that makes me impatient, I like it.  Dave is a lot like me. He's bigger than the other kids, and doesn't care to let them know about it.  He also falls asleep first.  I like his style.
  So if you haven't noticed by now.  Ellen is asleep and P is resting.  Which means I'm going out of my mind and talking about Sprout.  I don't know if this qualifies me for a straight jacket or not, but it sure seems like it.  So Caillou I hope you grow up without friends and yes it is Dave, It's always Dave.

BEEP BEEP F'IN BEEP

   There's no sleep in a hospital. We all know that.  The biggest thing that limits that sleep, other than residents with no bedside manner, is that freaking monitor. 

   Technology is great, but it is also inaccurate at times. A lot of times. Before I write this, yes nurses I know that there is a privacy button and I know how to use it.  The thing is, other than with our couple awesome nurses, they don't really like you to hit it.  So constantly, just as my mind drifts from the hell we are living in, I get reminded of it with a series of beeps that don't mean shit.  Some little red node might have moved a millimeter the wrong way and now says she either has no pulse or she isn't breathing. That in turn sends you into a millisecond panic because you fear that it is true.  Oh wait, nope, she just yawned and it moved again. FML.  So I go back to playing my mindless game on the iPad and just as I hit a new level, BEEP BEEP BEEP BEEP BEEP.  Oh look, right after my panic attack subsides, I notice P has fallen asleep again and it now says she's breathing too slowly.  It never fails that someone has to rush in, mess with her, wake her up, and then we start this process all over again.  Repeat this every hour on the hour for 24 hours.

   I get it really.  This will come in handy if something really happens.  After surgery I believe it to be a necessity, after that I'm not so sure.  I would still pick the lesser of two evils and let me watch my daughter and be her alarm.  I think my football voice of "Somebody get the hell in here and save my daughter!" Would work just as well as ole girl at the nurses station checking Facebook instead of the monitors.  

   No matter how much I rant and rave, I will still BEEP BEEP BEEP get interrupted by that little tan box of jackass just as I fall asleep.  

Big guy in a Little Chair (Sing it like Farley)

1 am. Sitting next to a hospital crib in a chair that is made for someone half my size. Ellen is trying to get some sleep, but Little Bit has other plans.  She’s a tough one, but she doesn’t handle the pain of surgery real well.  So that means Dad gets to sit here, watch the final season of Dexter, and think about random stuff.

   I hate fake people.  I love seeing the smiles on a kid’s face when they make me a drawing or picture for P.  I can’t stand listening to people talk about college football and the players making bad decisions.  All they do is criticize them, but they have no idea what they go through daily.  I really wish I got to learn more from Jason Horne, but he still teaches me whether he knows it or not.  I think Burritos or wraps are the best form of lunch.  I take 2 scoops of pre-workout, but I know my heart probably hates me when I do.  I wish I was sitting in the back yard watching Tink smell the grass for the scent of cats and deer.  I miss eating breakfast with my Pop every Saturday. 

  These are the random things that go through my mind at 1am in a tiny chair.

   I understand people have issues, especially if I meet you in a hospital.  But do you have to be so damn rude? It blows my mind how incredibly insensitive other people are when in public. The cafeteria is like the watering hole of the Serengeti.  Why can’t we just be nice and smile to each other.  You are going to get your dang double heart attack patty with extra cheese, but just be nice about it.

   Entitled youth.  I’m probably going to write a 2 pager on this one later, but it gets harder and harder to bite my tongue.  I don’t look any farther than the parents, or the lack thereof, to see why that little shit is the way they are.  It’s getting bad in the world and I don’t think it is going to get better.

   Why do people look down on Janitors? Don’t act like you never have.  I won’t lie, I used to avoid a janitor or not say much to them, but I changed that at Mars Hill.  I have had some of the best conversations with janitors whether they be at school, hospitals, or anywhere really.  They see and hear everything, just remember that.

   I love beer and I can’t stand people that judge others who drink in public.  If I want to have a beer with my friends at 5pm at the General Morgan I’m going to do it.  So what if I teach your kid, they might be the reason I’m having that beer.  I have never once in my life let my extracurricular activities effect anything in my life.  I graduated at the top of my class in high school, college, and for my Masters degree.  I also put some microbrewers kid through college probably.  Don’t judge me differently because I like to have a beer or 6 every now and then.

   I can’t stand people who chew with their mouths open.  Maybe that is the teacher in me, but it irks me.

   I have a hard time shutting my brain down at night.  All I want to do is heal Penelope.  All I want to do is take her pain away.  Since I can’t, I fill my brain with some random stuff to keep me thinking and keep me busy.

There's no crying in baseball

   I cannot stand crying in front of people.  It almost pisses me off when I do it.  I have my moments and it comes out sometimes, but that is rare.

   I don’t even like crying in general.  It messes up my contacts or makes my glasses fog for one.  That is just the first thing that makes me upset about crying.

   Ellen is the only person that I think I can even cry in front of and not feel weird about it.  I feel weird crying to my Mom even.  It has nothing to do with not feeling comfortable or feeling like I can’t, but that’s just me.  I’m sure there is some deep seeded “thing” inside of me that a therapist with an uncomfortable couch could elaborate on, but I’m not at that point yet.

   I don’t cry when we lose a game. I don’t cry at the end of a season. I think that is just weird.  If you lost a game, you obviously didn't do something well enough.  When the season is over, I’m just happy I got to be a part of it and yeah it sucks it’s over but the sun is still going to come out in the morning.

   I cried when Chase died and I cried when Michael passed.  Those were the first times I felt helpless, but I had forgotten what that felt like. I don’t cry a whole lot when bad stuff happens to me. When it comes to my daughter though, there’s a different type of cry that happens and it only happens with her.  That feeling about makes me sick to my stomach and I just get mad again.  When I get news about P, I always make sure I’m somewhere alone because I can’t hold it back.  It never fails, I cry.  Most of the time I don’t let Ellen see me cry, but then there’s times I send her the “Cried all the way home, FML” text which is code for I got home and am Ok now.

For me my crying spot is in the bathroom.  I think it is because I can look in the mirror about halfway through and tell myself to quit being a pansy and get it together.  My lifting partner right before he’s about to do something heavy says, “alright you big baby let’s go.” I don’t know if he means to say it, but it’s a mild version of what I tell myself when I’m crying and I always think of those moments (random I know).  I know it is good to cry, but sweet Lord it sucks.  I like to cuss a lot when I get done crying.  Maybe that is my way of cleansing everything.  I’m just glad nobody hears me.  I mean I say some messed up stuff.  I think I have made up a few new ones that would make Bobby Knight proud, but Coach B disappointed at the same time.  

   It’s almost like crying is just a precursor to me getting mad as hell.  I don’t know if other people get that way, but I don’t know any other way.

   I've cried more in the past week than I have in my entire life I think.  I don’t think crying is a sign of weakness or any crap like that; I just don’t like it.  Maybe one day I'll think differently about it.  As for now, I'll just stick to crying in the bathroom, cussing the mirror, and walking back out like nothing is wrong.

4 Walls

You want to get real in touch with your thoughts and feelings? Sit in a freaking hospital room for more than one day.  You want to start getting delirious and questioning everything you know? Sit in a hospital room for more than 3 days.  People always ask, “How are you doing?” Well, you probably don't want to know the truth, so I hit you with the “I’m ok.”

                I get so pissed when somebody says, “I’m Tired!” or “I have so much going on I can't handle it.”  Usually it is because they watched Netflix all night or they don't do their damn job and leave everything to the last minute.  I'll rant more about that later, but that has to do with the shit-storm of emotions that are in my head on a daily basis.  One of my coworkers said it best, “You just have to act like you are in a movie and be the best actor you can.” I scream WTF internally about 20 times a day, and that’s not towards kids. My kids are my escape, they make me happy.

                Truthfully, I don't see how Ellen stays sane having to stay when I go to work.  I've seen a lot of hospital walls over the past couple years and they all bring the same emotions.  I start out scared for my little girl and what the results will show.  Then I get anxious while they fiddle fart around trying to make arrangements for what is next.  Usually it will take too long and I get mad and start cussing under my breath.  Next, I will get a little relief because they start making her feel better.  From that point it usually is a roller coaster of all those and about 10 more combined.

                Sure you can get out, walk around, and people watch but you still have to come back to these walls.  You sit there and memorize every poster, every medical procedure, every nook and cranny just trying to find something different that takes your mind off of that little girl laying in the bed in the middle of the room. 

                Cell phones and Clash of Clans makes it easy to mindlessly wander for a few minutes, but if that Wi-Fi is shitty, then you are going to have a bad time.  I don't mind reading, I've actually finished a few books sitting in these recliners, but with so many people coming in and out, it’s hard to get a good read.

                Distractions aside, hospital stays make me crazy as hell.  I start diagnosing P’s illness and make it a hundred times worse than it ever is.  I usually start judging and guessing about the nurses that come in and out and the doctors who make their rounds.  It’s always funny to see the residents that look like they've been on 3 day bingers, I don't trust a word they say. 

                My emotions are just that; Mine.  Other than Ellen and my friend Logan, it is hard for anybody to understand what’s up in my head.  The rage is the hardest part to control and how I've gone this long without my fist going through something or someone is beyond me.  I’m really good at keeping all these thoughts and emotions in. It’s best for everybody.

The Beginning

   Monday May 2^nd is a day I will never forget.  I went home that night before to get some rest and go to work.  As good as it sounds to get a good night’s rest, I hate every second of being away from my little girl and Ellen that are in the hospital, but that’s for another talk.  I knew we were going to get some kind of news that day, but I never expected someone to tell us it was a highly aggressive cancer.  That thought never entered my mind.

  Ellen called me from the hospital and as soon as I heard her start talking my world stopped.  I went to another room in school to be alone, but it wouldn’t have mattered if I was in Times Square; everything stopped, everything went silent.  I literally spent the next couple minutes after hanging up the phone standing there numb.  I couldn’t cry, I couldn’t think, I couldn’t even process it all.  I went from sad to mad and 400 emotions in between in the time it took me to tell Dale and my team that I had to go and get to my girls.

  I’m only going to write about this journey because I have a hard time getting it all out.  There’s only a handful of people that understand to a degree what this life inside my head is like.  I’m going to cuss, I’m probably crying while I write some of this.  I’ll probably say things that people don’t agree with, things you won’t understand, but truthfully, I could care less.  Penelope always tells me how it is, so I figure I can too.