Monday, March 26, 2012

The Boy in McDonald's

We are enjoying a wonderful family vacation at the moment.  We started out in St. George, Utah where I was lucky to get to both ride and run the St. George Ironman course.  I can't wait for May 5th when I get to race my first Ironman for Maggie!

From St. George we made our way south to Henderson, NV.  Andrea and some of her friends who are on the trip with us went to Phantom of the Opera in Las Vegas while the dad's watched all the kids.  She had a great evening!  The kids and I had a very nice evening as well.  We decided that we should go watch the movie The Lorax at the movie theatre.  Great movie by the way!  Before the movie I asked the kids where they wanted to go to dinner.  McDonald's was the answer of course so off to Mickie D's we went.  It was there that I had an experience I'd like to write about this afternoon.

This experience is nothing out of the ordinary.  In fact, if you are observant, you could see a similar thing most days.

We walked into McDonald's and after herding the cats away from the playland and up to the counter to order I saw something unique.  Sitting at one of the booth's I saw a father and his son eating.  The young boy was around the age of 16.  It was clear he was blind.  I ordered and got situated, but kept an eye on the pair sitting in the booth across the room.  Initially when I saw the boy, my heart went out to him.  Something so simple as going to McDonald's is not so simple for him.  I was touched by the way he depended on his father.  He trusted his father for everything.  Where to walk.  Where to sit.  What to eat. I wanted to go to him and tell him that everything was going to be ok.  That someday, he would be made whole and that this experience he was enduring was only for a season.  It reminded me of a talk I heard once from a man named Jeffrey Holland.  In this TALK he shared this experience he had as a young father:

Thirty years ago last month, a little family set out to cross the United States to attend graduate school—no money, an old car, every earthly possession they owned packed into less than half the space of the smallest U-Haul trailer available. Bidding their apprehensive parents farewell, they drove exactly 34 miles up the highway, at which point their beleaguered car erupted.

Pulling off the freeway onto a frontage road, the young father surveyed the steam, matched it with his own, then left his trusting wife and two innocent children—the youngest just three months old—to wait in the car while he walked the three miles or so to the southern Utah metropolis of Kanarraville, population then, I suppose, 65. Some water was secured at the edge of town, and a very kind citizen offered a drive back to the stranded family. The car was attended to and slowly—very slowly—driven back to St. George for inspection—U-Haul trailer and all.

After more than two hours of checking and rechecking, no immediate problem could be detected, so once again the journey was begun. In exactly the same amount of elapsed time at exactly the same location on that highway with exactly the same pyrotechnics from under the hood, the car exploded again. It could not have been 15 feet from the earlier collapse, probably not 5 feet from it! Obviously the most precise laws of automotive physics were at work.

Now feeling more foolish than angry, the chagrined young father once more left his trusting loved ones and started the long walk for help once again. This time the man providing the water said, “Either you or that fellow who looks just like you ought to get a new radiator for that car.” For the second time a kind neighbor offered a lift back to the same automobile and its anxious little occupants. He didn’t know whether to laugh or to cry at the plight of this young family.

“How far have you come?” he said. “Thirty-four miles,” I answered. “How much farther do you have to go?” “Twenty-six hundred miles,” I said. “Well, you might make that trip, and your wife and those two little kiddies might make that trip, but none of you are going to make it in that car.” He proved to be prophetic on all counts.

Just two weeks ago this weekend, I drove by that exact spot where the freeway turnoff leads to a frontage road, just three miles or so west of Kanarraville, Utah. That same beautiful and loyal wife, my dearest friend and greatest supporter for all these years, was curled up asleep in the seat beside me. The two children in the story, and the little brother who later joined them, have long since grown up and served missions, married perfectly, and are now raising children of their own. The automobile we were driving this time was modest but very pleasant and very safe. In fact, except for me and my lovely Pat situated so peacefully at my side, nothing of that moment two weeks ago was even remotely like the distressing circumstances of three decades earlier.

Yet in my mind’s eye, for just an instant, I thought perhaps I saw on that side road an old car with a devoted young wife and two little children making the best of a bad situation there. Just ahead of them I imagined that I saw a young fellow walking toward Kanarraville, with plenty of distance still ahead of him. His shoulders seemed to be slumping a little, the weight of a young father’s fear evident in his pace. In the scriptural phrase his hands did seem to “hang down.”15 In that imaginary instant, I couldn’t help calling out to him: “Don’t give up, boy. Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead—a lot of it—30 years of it now, and still counting. You keep your chin up. It will be all right in the end. Trust God and believe in good things to come.”

From a very young age, I remember experiences where I saw an individual who had a disability and how my heart went out to them.  I remember always wanting to protect them and help them reach their highest potential.  I wanted them to feel loved and accepted. 

Now, having a son with Down syndrome, those feelings are even greater than before.  I want to work and serve on their behalf.  A huge motivating factor to me in my work, racing triathlon's, or anything else I spend my time doing is to be an advocate for those who face difficult circumstances.  It's to give them hope that indeed there is help and happiness ahead --a lot of it.

Whether you are a father of a child who is blind or someone who is facing difficult personal challenges, don't give up.  Keep trying and keep fighting.  These difficult times will eventually pass and all will be made right in the end.

It is an honor to be Nash's father.  It is an honor to work and serve on behalf of Nash and other's with Down syndrome.  I've said this before and I'll say it again.  The time spent in service to these children has no doubt helped them, but is nothing compared to how much they have helped me. 

Saturday, March 17, 2012

My Thoughts on The Oregon Couple...

A week ago I read an article in a newspaper about a family that sued the hospital for an inaccurate test result.  When this couple found out they were expecting a child, they had tests performed to determine if this child has Down syndrome.  The tests came back negative.  The couple went on with the pregnancy.  After their child was born, the doctors determined the child had Down syndrome.  The couple sued the hospital for botching the test results.  They stated they would have terminated the pregnancy had they known their child had Down syndrome.  The courts ruled in their favor and they were awarded $3,000,000.  You can read about it here:

I've gone back and forth on whether to even post about this.  Initially when I read this article, I was angry with the couple.  After pondering the situation for a few days, I'm over the anger part, but more than anything have a desire to help people better understand the value a child with Down syndrome brings to a home and a family. 

Nash was our second child.  When we were expecting our 3rd child, the doctor asked us if we wanted to test to see if this child had Down syndrome.  Andrea and I looked at each other and kind of smiled.  We were both thinking the same thing.  We both would love to have another child with Down syndrome. 

This seems like a foreign concept to many and I have to admit, it would have been a foreign concept to me as well prior to Nash being born.  However, since getting the opportunity to be a parent of a child with Down syndrome, I can truly say that it has been amazing! 

My hope is that this couple will have their hearts touched the same way that thousands of parents have throughout history.  There are many emotions that are experienced when you find out your child has Down syndrome.  Not all of them are positive.  I have to imagine that this couple experienced very similar emotions. 

I do not agree with many of their decisions.  I do not agree with the decision they would have made to abort their child had they known it had Down syndrome.  I do not agree with their decision to sue the hospital for messing up the test results.  However, we never know what their life's experiences have been prior to having their child.  We do not know their current circumstances either.  We do know they have been blessed with a special child and ultimately we can hope that everything will work out for the best. 

Use this situation as a positive.  Use it to fuel your desire to help those with Down syndrome and those who are just being introduced into the Down syndrome community.

Saturday, March 10, 2012

End the R-word

Great video put together by the Treasure Valley Down Syndrome Association.  It's awesome to see the local Boise market coming together to help create awareness for those with Down syndrome!

Wednesday, March 7, 2012

RODS Racing

A major focus recently has been developing our racing team, RODS Racing, to help promote Reece's Rainbow and Maggie, our chosen orphan to race for this season.  I'm happy to report that with the help of incredible team members, we are making great progress! 

As you may have seen under the racing tab, we currently have 8 members of the RODS Racing Team (Racing for Orphans with Down Syndrome).  Our first race is only weeks away in Oceanside, California.  The distance is a half Ironman (70.3) and there will be 6 of us wearing the RODS Racing jerseys and a few dozen of our supporters proudly wearing the RODS Racing race T's during race day.  We are finalizing the printing of hundreds of 3x5 cards that we plan to hand out during the week of the race.  These cards explain about our team and most importantly, the cause that we are racing for. 

We are over a third of the way to our goal of reaching $10,000 donated towards Maggie's adoption account.  I've been humbled and amazed at the generosity of so many who have come forward to donate to Maggie.  I've always believed that we become our best selves when we focus on serving others.  I've been blessed to get to observe others willingness to sacrifice and serve on Maggie's behalf the last few weeks.  Thank you for your example and selfless service! 

Training for these races and in particular the big race, Ironman St. George, has really gone to another level for me.  When the alarm goes off at 4:15am on Tuesday's and Thursday's to go swim it's not as difficult to force myself out of bed.  Pushing through the last 10 miles of a 6 hour bike ride is something I willingly do because I know the efforts being made are going to bring Maggie that much closer to finding her Forever Family.  It is an honor for me to get to do this on her behalf!  I look forward to the day when I get to meet Maggie and her new family.  That day will be a great victory for the One Step Closer To Home and RODS Racing family! 

Thursday, March 1, 2012

The Folded Napkin

This was shared with me not too long ago.  It brought a lot of thoughts to mind and reminded me of some of the kids with Down syndrome I grew up with.  Their innocence and special way about them always brought a smile and a special feeling. 

I can relate to this story with my son Nash as well.  For whatever reason, he always has gravitated towards grown men, especially the ones who look like bikers or have a scruffy beard.  He goes right up to them and puts out his arms so they will pick him up.  Andrea and I have seen some pretty funny expressions from these guys, but without fail, they always pick Nash up and start to talk to him.  People with Down syndrome have a way to help people be their best selves.  I hope you enjoy this story as much as I did.

A Truckers Story
I try not to be biased, but I had my doubts about hiring Stevie. His placement counselor assured me that he would be a good, reliable busboy.

But I had never had a mentally handicapped employee and wasn't sure I wanted one. I wasn't sure how my customers would react to Stevie.

He was short, a little dumpy with the smooth facial features and thick-tongued speech of Downs Syndrome. I wasn't worried about most of my trucker customers because truckers don't generally care who buses tables as long as the meatloaf platter is good and the pies are homemade.
The four-wheeler drivers were the ones who concerned me; the mouthy college kids traveling to school; the yuppie snobs who secretly polish their silverware with their napkins for fear of catching some dreaded "truck stop germ" the pairs of white-shirted business men on expense accounts who think every truck stop waitress wants to be flirted with. I knew those people would be uncomfortable around Stevie so I closely watched him for the first few weeks.

I shouldn't have worried. After the first week, Stevie had my staff wrapped around his stubby little finger, and within a month my truck regulars had adopted him as their official truck stop mascot.
After that, I really didn't care what the rest of the customers thought of him. He was like a 21-year-old kid in blue jeans and Nikes, eager to laugh and eager to please, but fierce in his attention to his duties. Every salt and pepper shaker was exactly in its place, not a bread crumb or coffee spill was visible when Stevie got done with the table. Our only problem was persuading him to wait to clean a table until after the customers were finished. He would hover in the background, shifting his weight from one foot to the other, scanning the dining room until a table was empty.Then he would scurry to the empty table and carefully bus dishes and glasses onto his cart and meticulously wipe the table up with a practiced flourish of his rag. If he thought a customer was watching, his brow would pucker with added concentration. He took pride in doing his job exactly right, and you had to love how hard he tried to please each and every person he met.
Over time, we learned that he lived with his mother, a widow who was disabled after repeated surgeries for cancer. They lived on their Social Security benefits in public housing two miles from the truck stop. Their social worker, who stopped to check on him every so often, admitted they had
fallen between the cracks. Money was tight, and what I paid him was probably the difference between them being able to live together and Stevie being sent to a group home. That's why the restaurant was a gloomy place that morning last August, the first morning in three years that Stevie missed work.

He was at the Mayo Clinic in Rochester getting a new valve or something put in his heart. His social worker said that people with Downs Syndrome often have heart problems at an early age so this wasn't unexpected, and there was a good chance he would come through the surgery in good shape and be back at work in a few months.

A ripple of excitement ran through the staff later that morning when word came that he was out of surgery, in recovery, and doing fine.

Frannie, the head waitress, let out a war hoop and did a little dance in the aisle when she heard the good news.

Marvin Ringers, one of our regular trucker customers, stared at the sight of this 50-year-old grandmother of four doing a victory shimmy beside his table.

Frannie blushed, smoothed her apron and shot Marvin a withering look.

He grinned. "OK, Frannie, what was that all about?" he asked.

"We just got word that Stevie is out of surgery and going to be okay."

"I was wondering where he was. I had a new joke to tell him. What was the surgery about?"
Frannie quickly told Marvin and the other two drivers sitting at his booth about Stevie's surgery, then sighed: " Yeah, I'm glad he is going to be OK," she said. "But I don't know how he and his Mom are going to handle all the bills. From what I hear, they're barely getting by as it is." Marvin nodded thoughtfully, and Frannie hurried off to wait on the rest of her tables. Since I hadn't had time to round up a busboy to replace Stevie and really didn't want to replace him, the girls were busing their own tables that day until we decided what to do.

After the morning rush, Frannie walked into my office. She had a couple of paper napkins in her hand and a funny look on her face.

"What's up?" I asked.

"I didn't get that table where Marvin and his friends were sitting cleared off after they left, and Pete and Tony were sitting there when I got back to clean it off," she said. "This was folded and tucked under a coffee cup."

She handed the napkin to me, and three $20 bills fell onto my desk when I opened it. On the outside, in big, bold letters, was printed "Something For Stevie."

"Pete asked me what that was all about," she said, "so I told him about Stevie and his Mom and everything, and Pete looked at Tony and Tony looked at Pete, and they ended up giving me this." She handed me another paper napkin that had "Something For Stevie" scrawled on its outside. Two $50 bills were tucked within its folds. Frannie looked at me with wet, shiny eyes, shook her head and said simply:

That was three months ago. Today is Thanksgiving, the first day Stevie is supposed to be back to work.

His placement worker said he's been counting the days until the doctor said he could work, and it didn't matter at all that it was a holiday. He called 10 times in the past week, making sure we knew he was coming, fearful that we had forgotten him or that his job was in jeopardy. I arranged to have his mother bring him to work. I then met them in the parking lot and invited them both to celebrate his day back.

Stevie was thinner and paler, but couldn't stop grinning as he pushed through the doors and headed for the back room where his apron and busing cart were waiting.

"Hold up there, Stevie, not so fast," I said. I took him and his mother by their arms. "Work can wait for a minute. To celebrate your coming back, breakfast for you and your mother is on me!" I led them toward a large corner booth at the rear of the room.

I could feel and hear the rest of the staff following behind as we marched through the dining room. Glancing over my shoulder, I saw booth after booth of grinning truckers empty and join the procession. We stopped in front of the big table. Its surface was covered with coffee cups, saucers and dinner plates, all sitting slightly crooked on dozens of folded paper napkins. "First thing you have to do, Stevie, is clean up this mess," I said. I tried to sound stern.

Stevie looked at me, and then at his mother, then pulled out one of the napkins. It had "Something for Stevie" printed on the outside. As he picked it up, two $10 bills fell onto the table.

Stevie stared at the money, then at all the napkins peeking from beneath the tableware, each with his name printed or scrawled on it. I turned to his mother. "There's more than $10,000 in cash and checks on that table, all from truckers and trucking companies that heard about your problems.

"Happy Thanksgiving."

Well, it got real noisy about that time, with everybody hollering and shouting, and there were a few tears, as well.

But you know what's funny? While everybody else was busy shaking hands and hugging each other, Stevie, with a big smile on his face, was busy clearing all the cups and dishes from the table..

Best worker I ever hired.