Monday, December 3, 2012

A Father's Perspective- Letter to His Daughter

Heath White's journey has been one very close to the heart of Robin and Seth Tolliver.  Heath's story helping Seth through his healing and acceptance process.  He is a true inspiration to all father's and his story is incredible.  Below you will find the letter written by Heath along with a story that ESPN did on him and his family.

A Father’s Perspective                                                                                                                    

Dear Paisley, I wanted to take a second, while the feelings are still relatively fresh, to let you know about the emotional rollercoaster you have put me through for the past 2 years.  I started writing this as a speech to be delivered when you were 18 months old.  I wanted people to know just how much I love you and how much you have taught me, but I found myself not being honest about my initial reaction to having a daughter with Down Syndrome.  I was afraid you would someday find out how scared and selfish I used to be.  The more I thought about it, the more I decided that I want you to know the truth.  Maybe our story can help other people see the light sooner than I did.  Letting you know how much I didn't want a daughter with Downs shows the full spectrum of emotions you have taught me and the amazing influence you and other kids with disabilities can have on this world.  I have written probably hundreds of papers in my life and between a long academic and military career I have given just about as many presentations, but this one could be my most challenging.  Writing a good paper or speech involves two things, knowing your topic and knowing your audience.  In both cases it’s you, Paisley.  The topic is the easy part, but since you’re so little I have no way to know what your level of reading comprehension will be.  Despite this uncertainty, I am going to write to the woman I know you will become.  I will keep this letter with me to motivate your mother and I to work so that you can someday fully grasp the love behind these words.
To say that you now define me is no small statement.  I've made my life seeking degrees and titles that let people know what I've accomplished, but there's no title I'm more proud of than simply being Paisley's Dad.  Two years ago if you would have told me I'd view my greatest accomplishment as having a daughter with a perceived disability, I would have told you, you were crazy.  But today I am making a feeble attempt to put into words my journey and love story with you, Paisley Ella White.
As I said before, some of this is not pretty.  If you think I'm a horrible person in the beginning, that's fine.  I want to lay my soul bare, so that in the end, when I tell you that I love you more than life, you will know that I've been completely honest about everything, and you will have no reason to doubt my love.  My ultimate goal is for others to learn from my mistake.  If they can see the inevitable love they will have for their child sooner than I did, then perhaps they can live without the regret of having thought of their child was anything less than the perfect and beautiful little person you are.  
To put everything in context, let me recite my resume for you.  This was my favorite topic of conversation before you came along.  I was Captain of my High School football team.  I graduated 3rd in my class and attended Northwestern on an Academic scholarship where I graduated with a 4.0 GPA.  I received a scholarship to SMU School of Law but chose to join the Air Force and fly bombers instead. I married my high school sweetheart, your mom the head cheerleader.  I have my Master's in Aeronautical Science again with a 4.0 cumulative GPA.  I've run over a dozen marathons with a personal record of 2:58 in the Boston.  As a pilot, the Air Force and several other government agencies have put me through countless physicals and mental evaluations to screen me for almost every disease or abnormality known to man.  In my three yearly physicals, the only comment I ever get is, ”Wow, your pulse is so               low you must a lot.”  I think that’s why your heart defect scares me so much.  My goal was always to leave the military, fly for the airlines, get a house on a lake, and retire with a couple of million dollars.  Along the way I guessed we would have a couple of kids probably a boy and a girl, but once they left for college we probably wouldn't see them much.  They'd be too busy being successful and chasing goals like me.  It was the real American Dream, apple pie kinda future.
Read that last part again if you need to, but nowhere in there did I mention raising a child with what society views as a disability.  That would be beneath me.  I've got genetically superior genes.  I come from "Good Stock".  At 82 all four of your great-grandparents are still alive; no one on either side of our family has a child with any type of abnormality.  As I said before, look at my numbers, my titles, or degrees.  I'm a winner with winner’s blood.  Having a child with a disability was for nice, loving couples, who would make lemonade when life gave them lemons, not hard charging go-getters like me.  Besides, I had always been supportive of people with disabilities.  Despite the fact that we didn't know a single soul with Down Syndrome, we went to the Buddy Walk for the 3 years prior to your arrival.  I had also volunteered at the Special Olympics, but this was all for other people’s kids, not mine.  Looking back on it I think it was like thanking God for making me healthy.  It's sad to say, but it was like passing a car wreck on the road.  In my view Down Syndrome had wrecked their lives.  Like any highway tragedy, I felt sorry for those involved, but I still had to slow down, look, and thank God it wasn't me.  In my mind by going to those events, I was putting in my time, so something like that wouldn't happen to me.  In fact, when I found out for sure you would have Downs that's exactly what I said.  Why me?  I've been supportive of people with disabilities.  I've done what my momma taught me.  I never used the "R word", I didn't pick on handicapped kids in school, or stare in public, so why me?  Looking back I can tell you why me?  And it was from a brief encounter with an angel at one of those Buddy Walks.
They say hind sight is 20/20, and looking at it now, I should have read the signs that you were coming and that you'd be special.  In addition to the Buddy Walks, your big sister's triple screen, or prenatal blood test, came back positive for Down Syndrome.  Since there is such a high false positive rate and since I was convinced of my genetic superiority, I was confident the test was wrong.  Three weeks later the ultra sound confirmed that your first sibling did not have Downs.  Although the ultra sound confirmed my perceived genetic superiority, it dealt a serious blow to my ego, because I was having a girl.  This didn't match with my view of the future.  The boy was supposed to come first.  I worked hard to change my vision of the future.  Slowly I replaced footballs and muddy boots with dance leotards and tea party sets.  It was difficult but I did it.
Fast forward 2 years.  Same triple screen, same ultrasound, same gender, different results.  The doctor’s said, “There’s a high probability you’re daughter will have Down Syndrome.”  This is where my downward spiral began.  We went back every two weeks for ultra sounds, and every time the tell-tale signs of Downs were there, the thick nuchal fold, failure of the embryonic sacs to fuse at the proper time, and a heart abnormality.  I began to pray constantly.  I was no longer cocky and in control.  Before this I would        pray and just thank God for your mom and sister, my health, and all the material things he had given us, but now I prayed for a miracle.  I would say a girl is fine.  I'm not picky any more, just let her be healthy.  This was part of the bargaining process I'll talk about later.  Now everyone knows I’m terrible with surprises.  If the information is out there I have to have it.  As a result I pressured your mom to have Amniocentesis, so I could know for sure.  I was so selfish at the time that to me the risks to you and your mom didn’t outweigh my desire to know for sure.  Needless to say, it came back positive.   Replacing footballs and muddy boots with dance leotards and tea party sets is one thing, but to replace the captain of the football team with a physically and mentally disabled child was incomprehensible at the time.  A world of questions began to flood my mind.  What would your potential be?  Would you be able to speak?  Would you even know who I am, or would you just set in a catatonic or vegetative state and stare into the distance locked away in your own undeveloped mind?  Again, all I could think was why me?  I'm as healthy as a horse, I've served  my country during war, I've never done drugs, and always paid my taxes.  Like I said, this "Daddy thing" was always supposed to be a part-time gig for me.   It was going to 18yrs then see ya.  I didn't sign-on to have a kid with me for life much less one with a disability.  How was this part of the American Dream?  I already had a little girl.  This one was definitely supposed to be a boy.  I even already had the name picked out.
Later on I read that learning you're going to have a child with Downs is like experiencing a death.  You have a vision of who your child will be, what they will look like, and all they will accomplish, then one little chromosome changes everything.  It's also been compared to being a child at Christmas and waiting to open a big shiny present.  You can tell by the size and shape that this is the one that you really wanted.  Now imagine when you open it, it's broken.  That's what I felt, like I was getting, a broken baby.  I felt like I was in Junior High all over again.  How could I go to school knowing all my friends would be wearing the newest cool clothes and I was wearing stuff from Goodwill?  All I could think about was myself and how you reflected on me.  I'm more ashamed of this than anything in my life but that's the way I felt, like you were broken.  I went through the entire grieving process, and all the emotions that accompany a death. First, it was denial.  I caught myself saying, "this isn't happening to me!"  Next came anger.  I was mad at everyone, God, your mom, and  everyone who never had to experience adversity during pregnancy.  Like I've said before, I would ask, "why is this happening to me?"  Then came endless bargaining.  I would tell God, "If you take away the Downs I promise I'll be a better person."  Next came depression.  I told myself' "I don't care anymore.  I'll just go to the airlines, never be home, and leave your mom to deal with this."  The last stage of grief is acceptance.  This happened shortly before you were born.  This is where you say, "I'm not looking forward to this but let's do it."  I went through them all, but unlike grieving there's another stage to having a baby with Down Syndrome, and that is pure joy.  This is the stage I’m in right now.  
As you probably know by now your Dad likes to consider himself a thinker.  So, you really threw me for a loop.  No matter how much studying, logic, or reasoning I threw at this problem there was no solution to be found.  And unlike a physical threat there was no person or being I could fight or out run.  It was like looking down the barrel of a loaded gun with a Downs Baby ready to hit          me right between the eyes.  Only that's not where you got me.  You went straight for the heart.  I wish I would have known then what I know now.
When I finally reached the acceptance stage a month or two before you arrived, I decided to do what any good military officer would do if heading into a conflict, study my enemy, Down Syndrome.  I needed to know what it was, what were it's strengths and weaknesses, and how bad is this really going to be.  You see, despite the time I had spent around children with Down Syndrome, I had never truly seen them for who they are.   If I had of been a participant rather than a spectator at those events I would have known Downs isn't the enemy, it's society's perception of Downs that is the enemy.  In the course of my readings, parents would write about what a joy their child is or how they will teach you so much, or they are the glue that holds their family together.  During my acceptance phase all I could say to this was "horse hockey."  These were the statements of weak minded optimists, losers who had accepted defeat to Downs.  You see for me to be happy about having a daughter with Downs meant that all that I had worked for, all the prestige and honor I sought was a charade.  It meant there could be happiness without accolades and honors.  Although I accepted having a daughter with Downs, nobody said I had to like it.  Little did I know that all the anger and disappointment in the world didn't stand a chance against the light in your eyes and the toothless little smiles on your face.  
I wish I could tell you that the day you were born all that anger and disappointment just  miraculously melted away.  I wish I could tell you that when I saw other babies beside you I didn't notice your short little neck, your almond shaped eyes, your nub of a nose, or the gap in your toes, but I did.  I wish I could tell you I wasn't jealous of young unwed couples who had smoked and drank through their pregnancy only to have healthy typical children, but I can't.  What I can tell you is that the first time you laughed when I tickled you all my anger and disappointment vanished forever.  I can tell you that since that epiphany, not a day goes by that I don't kiss your short little neck, your almond shaped eyes, your nub of a nose or the gap in your toes.  And I can tell you that if I could go back in time I wouldn't change anything about you.  To me you're perfect, because you represent what's good in me.  Although you're only 18 months old you've taught me so much.  You've taught me to not take anything for granted.  That it's not about who gets to the finish line first but how far you come to get there.  You’ve taught me that victory doesn’t come from the defeat of others but from doing what you thought was impossible, and finally, you’ve shown me that a genuine smile is contagious.  I often think that you’re much wiser than you appear.  In my opinion you simply choose to have Downs because you know that's the only way to reach people like me.
It wasn't long after you were born that people would ask, "how's the baby?"  I would say, "she poops, pees and sleeps as good as any baby."  And it was the truth.  I finally realized you were as good as any baby.  You hadn't changed; the symptoms of Down Syndrome had not changed.  Only my perceptions had changed.  I went from saying why me to saying why not me, instead of saying why Paisley to saying why not Paisley?  A little bit of my confidence returned.  I knew that if there was anyone in this world that could help      you reach your full potential it was me and if anyone could make the best out of a bad situation it was you.  I had a new goal.  Not to cure you of Down Syndrome, like your Mom and I have said, I wouldn't take the Downs away if I could.  Without Downs you wouldn't be the Paisley we know and love.  Without Downs you'd be just like everyone else, and how boring would that be.  My new goal was to help you reach your full potential and live the happiest life you can.  I like to kid myself that you knew I would turn around the whole time and that's why you picked me to be your dad, but I know that you really picked your Mom and I'm simply the box that came with the toy and cheeseburger in your Happy Meal of a life.  I'm flattering myself at that, but like it or not you're stuck with me.  
I had mentioned an experience I had at one of the Buddy Walks.  This particular year we took our Yellow Labrador Retriever, Cletus, to the walk.  I was squatted down letting a group of children pet him when a 4 or 5 year old little girl with Downs walked up without saying a word, moved my arm off my knee, climbed in my lap and then reached over and put my arm back around her.  I looked around for her parents; sure that someone was going to accuse me of being a kidnapper, a pedophile, or at best just a creep.  After a few seconds with her head leaned back against my shoulder, her mother turned around and smiled at her daughter.  To my surprise she wasn't quick to snatch her daughter from my embrace.  I appogetically said that she just climbed in my lap.  Her mother laughed and said, "yea, she does that."  The mother reached out for her daughters hand and the girl walked away without ever looking back.  It was a notable experience at the time, but I never grasped its significance till you came along.  Looking back on it now I think she was testing me.  I dream that you were up in heaven looking for a good daddy and told her to take my hug for a test drive.  I joke with your mom that it's either that or she gave me Downs.  Either way is fine, because I got you.  To say it was one of the most memorable and life changing experiences I've had, is an understatement.    
As a marathoner, there's plenty of time to think.  It's on long runs that I wrote my thesis, painted my ever changing picture of the future, or now daydream about the women my daughter's will become.  Around the time you were 6 months old the guilt began to sink in about how I had felt and all the pressure I had put on your mom for having you.  I decided to run the Little Rock Marathon to show people how proud I am of you, how anything is possible, and to punish myself for being so selfish and ignorant.  Every training run I thought about you and how you would drive me to be a better father, husband, friend, and runner.  You were the gas that fueled my engine.  Every time it hurt or I wanted to quit, I thought that it was nothing compared to the challenges you had faced and will have to overcome your whole life.  What kind of example would I be setting if I gave up and didn’t give it everything I had?  It turned out that the race wasn’t the punishment I had been seeking.  To tell you the truth, I probably got more out of it than you did.  For those 26.2 miles, I didn't feel anything but joy and pride.  I couldn't wait to round the next corner or top the next hill so everyone could see just how beautiful you were and how you were already exceeding society's expectations.  At the finish line we were interviewed by a couple of TV stations.  When they asked if it was hard pushing a baby that far, I just laughed and told them that it was easy to    run that far when you've got someone with angel’s wings pulling you along.
Before I go, I want to tell you a couple of funny stories comedians have told that summarize what you've taught me.  The first one talked about the recent green movement and radical environmentalism.  He begins a rant about how pompous and self-important we are as humans to believe that we can destroy what it took God so long to create.  Specifically he talks about all the years we buried plastic before recycling.  His conclusion was that maybe we're not at the top of the evolutionary ladder.  Maybe Gods ultimate goal was to get plastic and he only made man so that we would make plastic for him.  That's the way I feel now.  I feel God only made me because he wanted a Paisley.  My whole life I pictured myself as the main character in the action/adventure that is my life.  I think that's why it took me so long to have kids.  I mean look at it, none of the superheroes had kids.  Indiana Jones, Luke Skywalker, and Maverick in Top Gun, none of those guys were dads.  You've taught me that there are other ways to be a hero than saving the world from a diabolical master mind.  You've stolen the show.  I've realized that in actuality I'm just a supporting character in the inspirational/comedy that is Paisley's life.  I don’t know how this story ends, but I think everyone will tell you I’m in  love with the leading lady.
The other story talks about a group of Special Olympic athletes on a commercial flight.  During the course of the flight they experienced a mechanical malfunction and were forced to make an emergency landing.  When the Captain made the announcement to inform the passengers he told them, "Ladies and gentlemen don't be alarmed be we just experienced a mechanical malfunction and we're forced to shut down an engine.  We will be making an emergency landing but don't to be alarmed, everything is under control.  After we land, do not be surprised if we are met by fire trucks.  They are only there for as a precaution.  We will let you know if anything changes."  The comedian said that as his life began to flash before him, he heard one of the Special Olympic athletes say, "fire truck?  We're going to get to see a fire truck?"  The comedian said he thought to himself how amazing that attitude was.  Here he was picturing a fiery death and regretting all his mistakes, while this kid in the back could hardly contain himself at the thought of seeing a fire truck.  You've taught me to look for the good in all situations, and it's never as bad as I think.  You're proof that sometimes the things that you dread the most can become your most prized possessions.
The last little joke that reminds me of you was told by a comedian on a morning show talking about severe turbulence on a flight.  He said that the plane was bumping around pretty violently when it hit an air pocket and dropped several hundred feet.  He said his already vice like grip tightened on the armrest and gasps rippled from the passengers around him as one little 5 year old little girl across the aisle threw up her hands and yelled, "WEE!!"  You've taught me it's all about perspective.  A turbulent flight can either be a horrifying experience or the best rollercoaster ride you've ever been on.  A disability can either be a reason to wallow in doubt or exceed the world’s expectations.  Negative words and stereotypes can either cause you to not try new things or they can cause          you shatter long held misconceptions.  
In conclusion, Paisley, you're my superstar, you're my fire truck and you're my wee.  The other night I went to check on your sister and thought about how it won't be too long till she's gonna be too busy chasing down her dreams to play with me.  I went in your room next and you were so small and peaceful, when it struck me.  The one fear that bothered me the most about Downs, having a kid with me forever is now the complete opposite.  Now my biggest fear is that you too will outgrow me and move on in search of your own dreams.  Before you were born I only worried about how your disability reflected on me.  Looking at it now, there's no better mirror in the world.  You can find the light in the darkest places of my soul and reflect them with a warmth that rivals the sun.  You're my light in the dark and it's a privilege to be your dad.
Love Always,

***** Heath White began pushing his daughter Paisley in marathons to promote Down Syndrome Awareness and was followed by ESPN all over the country. Together they ran just over 321 (significant for Trisomy 21) miles with the final race being the Little Rock Marathon March 2012.  He has plans for her to run her own races now to continue the positive awareness .

The Tolliver's were so inspired that they too are racing to bring awareness.  Their first race was the Little Rock Marathon which ironically was Heath and Paisley's last.  We are so fortunate to have a family like the Tolliver's to carry on with what Heath White began.

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