Thursday, April 21, 2011

Well It's Over, The Last Shriner's VisitSince our son was only weeks old, the Shriner's Hospital has been a part of our lives for over seventeen years. Multiple operations, check ups, physical therapy, hours on the road, new casts, splints, tears and cheers has come to an end. Today he was released from their care after a long day which began at three a.m. this morning.

                       Our son celebrates his release. He's wanted to stand on that wall for years.
                                   Posing with Scooby Doo just before our departure for home.

Our son was born with a condition called Athrogryposis, it's complicated so you can read more on it here.  When he was born we were in shock and worry. Another Doctor just happened to hear our sons condition being discussed by the team trying to figure out what was wrong with our son. This Doctor had been studying these lessor known conditions and took over and put casts on our sons little crooked feet and ankles immediately. It was the first step taken towards a solution to our sons long journey.
After a few days stay in the hospital we were finally able to bring him home. My wife and I sat and talked about how we would get him the help he needed. Unbeknownst to us, her Aunt Vera and Uncle Dace Ward - With the Amran Shrine Temple in Burlington North Carolina - had somehow received a call while on a cruise ship far away from their Shriner son Buzz Ward and his wife. They put the wheels in motion putting their vacation on hold making contacts from aboard the ship. I think it was twenty four hours later that my wife and I learned that our son had an appointment in Greenville South Carolina at the Shriners Hospital for children.

Now all these years later he - our son - drove us down part of the way in the car he has been riding in since around five years old. Some times we took my truck but mostly our car was the vehicle of choice. Why is that so significant that he drove? Because when he was born we were told he'd be lucky if he could ever turn a page in a book or even walk very well. Wow! He can do all those things today and more because of all the great people of the Shriner's and our local physical therapist who worked with him day in and day out. As parents we had to continue therapy at home between therapy sessions, operations and Doctor visits at the Greenville Unit of Shriner's Hospitals for children.
As parents we never gave up even when he would cry out in pain during the daily routine of working his joints, tendons and muscles. It hurt us to do it but we knew it had to be done.

We had to pay for the therapy visits only because we lived so far away but all the operations to correct his condition, the travel costs and motel stays the meals where all payed for by the Shriner's. He had some other medical issues unrelated to his condition that were very expensive that we had to pay for. If not for the Shriner's, we'd have been bankrupt. But we had decided in the beginning before being accepted by Shriner's that if we had to sell everything we owned and live in a tent to give him the care he needed, we'd do it. And we were prepared to move forward on that, no second thoughts. Honestly, we never gave it a second thought. There was no choice in the matter, we had to get our son the best care we could find and the rewards have been huge. All the folks at Shriner's have been like an extended family to us, a large part of our lives for seventeen years, seventeen whole years. I can't believe that part of our lives is over; we're going to miss seeing everyone from the children, the parents we met along the way and groundskeepers all the way to the Doctors.

I knew it in my heart and soul from our first visit our son would one day walk. His first years where spent in casts to his hips and he would roll across the floor to get around where he wanted to go. He had to wear a split on the right hand for several hours a day but none of that stopped him from playing. After the leg casts, between surgeries, he had to wear leg splints. This is when we could put him in a walker. So to see him actually walk was a long awaited milestone for us all. Once he could walk he was constantly on the move.
Boy you should have seen the accusing looks we'd get out in public sometimes. I remember one time in particular when he was less than a year old. We'd gone to the grocery store and had him in the buggy. He had casts all the way to his hips and his hand splint on. One couple kept staring at us disgustingly and kept making comments to each other so we could hear. "Look at that poor child. What in the world did they do to him?"  So my wife turns just smiling and begins telling them about his condition. It was pretty classy and classic. People always suspect the worst. I know, I've been dealing with it for years.

It's hard on many couples and it strains marriages of many who divorce. Usually the husband is the one who can't deal with it and walks out. Sometimes it's the other way around but mostly, it's the men I'm ashamed to say. I know the pain gentlemen. I was the very first one to see my son come into this world after the Doctors pulled him out after the C section. The room went silent, completely silent, then they snapped out of it and went to work cleaning him up. I had to keep telling my sedated wife everything was fine when she asked what was wrong. I was in shock but I had to keep it together for my wife's sake. I lost it when I walked into the waiting room to show him to the family. I grabbed hold of my Pop and just held on. Pop rode with me and I went home to get things ready for my wife and son to come home and began feeling sorry for myself, then I went into the bathroom and looked at myself in the mirror. "Your being a selfish bastard." I said to my reflection. "Your son needs you more than ever and all your doing is thinking about yourself. Stand up and be the man you need to be you piece of shit."
I walked out of the bathroom  having set myself straight, still in shock, but I knew what I had to do and when I got back to the hospital I began doing it. I went to the nursery to see him later that day and got to sit in the rocker and bottle feed him. I was the first one in the family that got to feed him, me with this itty bitty bundle all wrapped up sucking down that bottle. I just knew it was all going to be alright.

You know, there are still people who don't respect me and think, for some reason, that I have not been here for him. I've taken the heat. But they have not been in my shoes and frankly now, if I don't have their respect I don't really care anymore. Nobody knows what the three of us have been through, they never asked me if I needed help coping with all this, they never asked me how I was doing, they never said "Hey, if you need someone to talk to I'm here." That's alright because the ones who do know, they helped me shoulder the weight of ones who were ignorant. My parents and mother in-law were in my corner many times. The man up above and my son know the truth and I'm not worried anymore what the others think.   

But these parents that walk out on their kids with these medical conditions, if only they would stick it out they'd be made so proud by all these children who have so much courage, so much love to give and share. It's just amazing to us how extremely strong these children are, how they accept their conditions, endure the operations and outcomes of many afflictions and deal with it. These kids are champions. Although I hate my son and these other kids have to live with it all day in and day out it makes me so proud of them all.

Seventeen years of living with hero's, that's a hard thing to give up. His Doctors at Shriners, all the Shriners and their ladies, the physical therapist here at home, my wife's Shriner Aunts and Uncles and cousins plus her brother all made this happen for us. From the deepest depths of my soul I thank them all. Yes, seventeen years of dedicated hero's But I wouldn't have missed it for all the money in the world, not one bit. Our son, not only can he turn a page in a book, he can play guitar son, he's the crowning accomplishment in my life and I'm glad I was here for him every roll and step of the way.   


Arizona Harley Dude said...

Wooley, this is a tough read without a tear in the eye and a tug at the heart. I applaud you not for being your son’s dad, but for teaching him, and us, how to be a man.

Well done Sir!!!!!

WooleyBugger said...

Arizona Harley Dude,
I appreciate that a lot. It was a tough write too I have to tell you. Oddly enough, video game controllers turned out to be fantastic therapy for his fingers, hands and wrists. It was an experiment that payed off and we understand is implemented as therapy for some patients.
Ya know, I think he taught me how to be a man too.
Creeds song "With Arms Wide Open" explains well about the feeling of being a new dad.

Lady Ridesalot said...

Congratulations to you and your wife, but especially your son... for having come all this way!

What an amazing story of strength, love, and most of all... hope.

Because you and your wife never gave up hope for your little boy, he was able to drive himself and his parents to his final appointment. What a reward!

Like AZ Dude claimed... couldn't read this without a tear or two, but I can sense the and love and commitment your family has for each other. With that... all things are possible.

Give your son a big hug from me, and when he asks what that's all about... just tell him a long distant secret admirer felt like he deserved it.

WooleyBugger said...

Wow, thank you so much Lady. My reply to you is long overdue.
Ya know, the fact you mention his driving down to his last appointment never even crossed my mind during the writing of the post.
That car we had, we sold it soon afterwards.