All Mixed Up


It’s a funny thing about reflection – you look back and realize, in spite of everything, there are common threads of goodness strung through your life and suddenly it’s easy to see just how good you really have it.  It helps you appreciate the “little” things in life.

Then the “devil” hovering over your other shoulder slaps you in the head like you’re crazy.

I’m pretty sure since Claire’s diagnosis I’ve developed some type of multiple personality disorder.  One minute I find myself marveling at life’s simple pleasures, then I twitch and next thing you know I’m incredibly sad, angry at the world – or both.  Before you know it, I’m back – even keeled, calm, cool and collected.  It’s a vicious cycle.  Those of you who’ve been telling me for years that I’m nuts, I’m starting to believe you!

Here’s an example:

I remember standing in Cleveland Browns Stadium during the National Anthem just before kickoff of the Browns season finale against the Washington Redskins just a few weeks back.  This guy’s rendition may have been 2 minutes long (wasn’t too bad actually), but it felt like 2 hours as my head was all over the place. 

As I looked around, it was a beautiful day – sunny, a little chilly, but no snow…totally unexpected for late December in CLE.  I was very happy, very appreciative, very thankful to be there next to my father.  Browns games are our thing – it’s what we do.  We’ve done it since I was 8 years old or so.  Been to every home game with him since (except for that ’86 AFC Championship game…Dad, should’ve taken me instead of Joe – result would’ve been different!) – even while I was working for the team, I made sure to stop by on game day and visit for a few if I could.  Like I said, it’s what we do.  On that day, at that moment, I couldn’t have been happier.

Scanning the crowd, the whole stadium scene, I looked to the field and noticed the grounds crew.  As they typically do, they were lined up along the back of the endzone.  Except today, someone was missing.  In his place were just his shoes with his hat placed on top of them.  Behind them, there were the initials “EE” in a circle on the field wall next to a sign that read “Eric’s Endzone, We’ll Miss You”.  See, a friend of mine from the Browns tragically took his own life the day before.  How terrible.  I hadn’t seen him since I left the team, but he was the nicest person on staff, no question.  Always quick to offer a smile and a handshake, even quicker to ask how you were.  I had no idea he was in that much pain, that he was suffering so much on the inside.  I absolutely felt terrible.  So sad – so sad for him and for those he left behind.

Continuing to gaze out over the field and seeing our country’s flag waiving in the wind, I started to think about how much I take for granted living in this country.  Freedom, for one – definitely thankful for those that fight every day to keep this the greatest country on the planet. 

My mind started to wander through all of the things freedom affords us – life, liberty, the pursuit of happiness, the right to bear arms.  Screeching halt.  (If you remember, this was the weekend after the horrific tragedy in Connecticut.)  What the parents of those children in Connecticut must be going through having their kids gunned down in cold blood for absolutely no reason.  Their lives taken from them before they even had a chance for it to start.  How about the kids who were there, but were spared?  The fear, the terror they must have experienced…their innocence ripped from them.  The fact that we even have to worry about this kind of thing happening is crazy, let alone worrying that it could happen in OUR kid’s school.  Terrible.  No kid should have to go through that, no parent should have to bury their kid at such an incredibly young age.

You know what, it doesn’t matter how kids die – they just shouldn’t.  A few weeks earlier, another girl lost her battle with Rett Syndrome.  I say “another”, because this disorder is a serial killer in its own right – taking too, too many lives (including two more in the past week).  This one was different though.  We shared the same last name as this family.  Their daughter shared the same name as our daughter and the girls were roughly the same age.  This mother was one of the first to reach out to us when word began to spread about throughout the Rett community about Claire’s diagnosis.  Rest in peace Emma Claire Reilly, may you now fly free.  God speed Reilly family.

As I looked off into the sky and temporarily fall into a trance…

You know what, <forget> Rett Syndrome.  Why Claire?  What did she do to deserve this?  Why was she given this life sentence?  Why is she the one forced to live silently, strapped in a chair with her hands wrapped up like a pretzel in front of her face?  Why is she the one going through therapy every day?  Why is she the one who can’t run around and play with her brothers?  Why her?!  <Shoot>, why us – why me?!  I’ve done some things I regret in my time, but nothing to deserve this.  What did I do to deserve to struggle to get through every single day?  Why am I the lucky one who gets to fight with insurance companies, government agencies and schools?  Why did Colleen have to trade her job and her career in for daily trips to Cleveland Clinic?  Why are we the ones who get to constantly cry ourselves to sleep?  This is all bull<honkey>!  Why do our boys even know what Rett Syndrome is – <heck>, why do we?  We were doing perfectly fine before all of this…why!?

Because this is the hand we were dealt.  Because it is what it is.  Because life is only what you make of it.  Because God doesn’t give you any more than you can handle.  Luck of the Irish.  Luck of the draw.  Murphy’s Law.  Whatever.

Claire is daddy’s little girl.  Rett Syndrome will not, cannot beat me.  I will not let it ruin my marriage, I will not let it tear my family apart, and with God as my witness, I will do everything in my power to make sure it does not take my little girl from me anymore than it already has.  I will make sure she has every opportunity, every resource, every specialist by her side so my  dreams, our dreams, her dreams come true and one day I will hear her voice, I will watch her run.  I will help her through this – she is not alone.  You know what, we are not alone.  The boys will be stronger because of this.  WE will be stronger because of this.  This is why.

“And the hoooooommmmmmmmeeeeee of the braaaaaaaavvvvvvvvvvveeeeeeee!” 

Snap out of it – back to reality.  Like the Browns, beaten and battered, we live to fight another day.

Besides the multiple personality issues I’m obviously coping with, and despite what the “devil” on my shoulder may say about it, life is good.  This was never more evident than over the holidays.  Each Christmas card we received reminded me of what great friends we have.  Spending time with family reinforced just how strong our support system is.  Being able to take some time away from work and spend time with each of the kids and with Colleen really solidified what life is all about.  Each day is a gift.  Every person that is in your life is there for a reason. 

My New Year’s resolution?  Try to live more “in the moment”, enjoy the present – don’t dwell on the past, don’t worry (too much) about the future.  Enjoy every minute of today because you never know what tomorrow holds.  Hug more.  Kiss more.  Celebrate the “little things”.


4 thoughts on “All Mixed Up

  1. Sean – you are amazing – thank you for sharing your thoughts and “craziness” with those who love you and your family! I know we don’t see each other enough – but I think of you all so often. Stay “crazy” that’s how we all like you and stick to that resolution it’s a good one!

  2. Hey Sean…Your faith, love, & hope are showings….showing us how blessed we are to have you, Coll, Nolan, Brendan, &Claire in our lives. Our love & prayers continue….GPB &GMM

  3. You are truly amazing and such an inspiration! Always remember that we are with you on your journey in the good times and the bad. We are blessed to have you in our lives! Xoxo

  4. I LOVE THE “HIS” AND “HERS” VIEW! Sean, I love your writing. “Like the Browns”…so true. They may be beaten a lot, but their fans are always steadfast. Your “fans” are steadfast too :). Love you both…as you know.

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