The Greediest Place on Earth

Some of my fondest memories with Tyler occurred during our visits to Disney World.  A big reason that these trips were even possible, was the kindness and expertise by which the family was handled.  Of course Disney was expensive, but it was manageable for our little group.  

We started going in the year 2000 during their millennial celebration.  It was just Robin and I that year, but we learned that Disney might just be possible for Tyler, and we took a chance in 2001.  Over the last 20 years we may have done Disney nearly a dozen times.  The great memories are endless for all of us, Samantha included.  Tyler screeching in delight on the Tower of Terror, Samantha being picked to be Belle for the Beauty and the Beast show, giving Robin her 25th anniversary ring in front of the castle, meeting the cast of the Nemo musical, and on and on.  Perhaps the most special part was being able to enjoy many trips with my in-laws, and seeing them having the greatest time with their kids and grandkids.  We used to take these trips in May, right around Mother's Day, to avoid the crowds and stifling heat (although we often had 90 degree weather anyway).  

As the years continued on, and the trips continued, we started to feel a little less of the "magic".  A recent trip in particular we experienced that feeling of questioning the cost versus the experience.  Subtle changes made me wonder if I was their focus, or the money was the focus.  A park ticket that cost $50 per day now costs over $100.  Food experiences are easily reaching $50 per person at every meal.  An estimate on the cost for a family of 4 is now $4500 to $7000.  I'm not a baby, I understand they are their to make money, but they always did a good job of balancing that with giving a forever experience too.  That was changing...

The cost isn't the only negative thing happening at Disney World.  Fast Pass is now completely gone which was a HUGE planning tool that I needed in our situation.  Fast Pass was a system which allowed you to plan 60 days in advance for reserving 3 rides.  For us, we could decide the 3 rides that Tyler would enjoy the most, and would also have the worst lines or handicap access, and insure we could get those done without fail.  The remainder of the rides and experiences would be those that would be less difficult to manage lines, or less impactful if we had to skip them altogether.   Now there is a new system, no longer free ($15 per person per day) that allows you to try and schedule rides on the day of your visit.  So instead of having the times figured out months in advance, and sticking your phone in your pocket on the day of you visit and having fun, you now have to be ON YOUR PHONE during the day trying to schedule your next activity.  There is also strong conjecture that Disney uses their app to manipulate where the guests go so they can maximize their dollars (not yours).  Do the math...$15x4=$60x7=$420 additional bucks onto the family cost.  NOW...if anyone wants to ride the premier rides without waiting in line for hours, they need to pay $7 to $15 dollars EXTRA for that ride. Say the same family does both rides for an average of $10 per ride...$40x2=$80x7=$560.  In theory, if your family wanted to do every ride and wanted to skip the line for the busiest ones, it will now cost you nearly $1000 to do so.  Before this year the cost was $0.  

So how about handicap access?  When we took Tyler with us, we were able to get a card which allowed him to go to special access areas of most rides.  During the short wait, we were merged in as the accommodation was possible.  Usually within a few cars or boats we were able to load him on.  Some cast members even asked us if we wanted to ride a second time if things weren't crowded.  This was also a good way for us to get our fill of the experience and not need loaded and unloaded a second time later.  One thing to point out here...we never tried to take advantage of any service at Disney.  We were always treated generously and in return we made sure not to be unreasonable with our requests.  NOW, according to Disney's website, you pre-register for handicap access and you pick 2 experiences to get fast passes for, and then you get the regular program the day you go.  This may be helpful, but will certainly not be as guest-friendly as before.  Its great to have 2 additional ride passes, however, to think a special-needs parent can spend large amounts of time on their phones plotting the next activity is not reasonable.

So what does all this mean?  I used to recommend Disney for special needs families.  I won't do that anymore.  They have shown now that families are NOT their target audience.  Young, tech-minded people without young kids are the target audience.  The new system once you enter the park has been described by techies as confusing and complicated, so how is a non-tech-savy family ever going to get their value out of the visit.  Or perhaps the family needs to have their phones in their pocket, their eyes up, and enjoy what's around them. I thought Disney was where you went to escape?  I thought Disney was about family time and sharing experiences?  Those days are gone and they aren't coming back.

Unfortunately for young families, and special needs families, the "Happiest Place on Earth" has become the "Greediest Place on Earth".  And I, for one, pass.

Be well and God bless.

Tom

Ty and Sam

 I'd like to show you a beautiful picture:

Those of you who have known us for a long time might be surprised at this picture.  For us it was an unbelievably touching moment.

Tyler has never been a fan of children.  For some reason he acted as though he was threatened by them.  They have always made him intensely nervous and upset.  If allowed too close to a small child, he will attempt to take a hit or kick at them.  

And so it was for Samantha as she toddled around the house in her younger days.  She had mostly good experiences with him, but there were times that he would give her a smack on the top of the head, or a kick, just for being too close to him.  We also did a tremendous amount of buffering to keep her out of harm's way.  Tyler and I would spend our evenings in the downstairs family room while the girls spent time in the living room on the main floor.  I would communicate signals to let the girls know when Tyler was coming to the main floor for a drink or restroom break.  This would mean Sam would retreat to her playroom or under the kitchen table until the coast was clear.  

Through all of this...Sam always loved her brother unconditionally.  She wanted more than anything for him to smile at her, or hug her, or make the sign for "I love you".  Even during her elementary school years she would write essays about how much she loved him and wanted him to be well taken care of and safe.  I admire her so much for her willingness to see beyond his disabilities at such an early age.

Over the last few years at church, Tyler seemed more comfortable with being around her.  Perhaps its because she has gotten older, or he appreciates seeing her more now that they spend time apart.  She has continued to bravely step into his circle and ask for hugs, or talk with him, which he has not objected to.

But today was different...

Samantha was up front by the Christmas tree and we took a few pictures of her.  I decided to see if I could get a picture with the 2 of them.  We got a few side-by-side and then I coaxed him to put his arm around her.  Instead, he pulled her by the shoulders toward him and put his hands in her hair.  He loves hair, especially Robin's.  Very gently he played in her hair and grinned from ear-to-ear.  He was truly enjoying her closeness and was being affectionate toward her.  What a wonderful gift this moment was. They now have a relationship beyond what I imagined they would ever have, and it is so wonderful.

I keep mentioning how difficult our current times are, but there are still blessings in our lives that we have to hold on to and celebrate.  If Sam could work to break through with Tyler, there isn't anything that any of us shouldn't achieve with love and faith.

Be well and God Bless.  Tom

Happy Holidays from Tyler

On behalf of Tyler and our entire family, I'd like to wish everyone a joyous holiday season.  Regardless of what you celebrate or who you celebrate it with, we hope the season is filled with love and hope.  We are in challenging times, perhaps among the most challenging in our history, but we can conquer anything if we do it together.  

Look at this face?  How could this NOT bring joy and hope to the world!!

Just Keep Digging

I have a friend at work who is currently in a health struggle.  What makes matters worse is that the current COVID environment is delaying his ability to get down to the bottom of what is happening.  He and I have always had a habit of checking up on one another.  We share a love for the same beach area, we both have children that we worry over, and we both try to pick the other one up when things are going cruddy.  It can't be easy when things are failing you and you can't get the answers as to why.  

When thinking about him, I thought about Tyler.  A few months ago, Tyler was not doing well at all.  He was struggling with quickly overturning staff, undertrained staff, and other issues that sent him into an emotional and physical nose dive.  Like my friend, we felt like we were fighting with both arms tied behind our backs.

For full disclosure, I could not be the caregiver I once was.  I think I swallowed so much anxiety for so long that it deeply effected how I could handle the same scenarios today.  I've become much more comfortable with advocating from the outer circle.  But one thing that still comes back to me is the ability to keep digging when things suddenly go bad.  It has become a survival instinct of sorts.  Here are the steps that work for me:

1. Give myself time to feel bad.  I know that sounds silly, but I need to have a short time period where I feel bad for myself, get quiet, sulk, take long walks, drink too much bourbon, or just kick rocks.  It cleanses me and allows me to move to the next step.

2. Assess my situation.  Now that I've thrown my hissy-fit, I can now take a deep breath and assess where I am.  This is important!  I look at what my REAL problems are that need to be solved.  Once I start fighting it does no good to punch at the air.  What needs to happen to turn things around?

3. I start digging.  I find myself feeling better when I am active in the solution process.  This is where the e-mails start flying, and the phone calls.  Time to start gathering the troops of people who can help you dig out of the hole.

4. I get persistent.  Once I have my targets figured out, and the ball is rolling, I keep digging until something changes.  I tell myself that nothing will happen until something happens.  And then I dig some more.

I used to watch The West Wing, and they told a story on there that goes something like this:

Man falls into a hole...doctor walks by and the man says "can you help me out?" The doctor throws him a prescription and keeps walking.  A priest walks by and the man says "can you help me out?" The priest says a prayer and keeps walking.  The man's friend walks by and the man says "can you help me out?" and the friend jumps down in the hole.  The man says "are you crazy??  Now we are both down here!".  The friend says "Yeah...but I've been here and I know the way out".

We are all falling into holes right now.  Some are much deeper than others.  Its the really deep ones that get scary.  They can become dark, and exhaust us so badly that we feel like they have swallowed us whole.  But we have to keep fighting and digging.  And when we get tired we let someone dig some for us until we finally find the way out.  

To my friend and all of those trying to find the way out.  Just keep digging.  

Be well and God bless.   Tom

5 Year Review

 Its been 5 years since Tyler entered a residential facility.

5 years.

I think it would be fair to summarize the last 5 years for everyone.

So often I read comments people post stating their son/daughter could not enter a long term facility because they would not survive.  I have said before and I will say again, that for the MOST part, this is self-serving bullshit.  Before you condemn me for saying so, please understand, I am qualified to make that statement.  

Five years ago I said those very words about Tyler.  "He will implode without me" was my phrase of choice.  That phrase empowered out co-dependency.  What I was really saying was that I couldn't face the fear and the guilt of what that separation would mean.  The truths that stared me straight in the face 5 years ago was simple...I will die before Tyler.  My wife will die before Tyler.  Ty's sister has the right to choose how she lives without pre-determined obligations.  If I didn't secure his future he might have someone else do it after I am gone.  While that might be great for me (dead people feel very little guilt), it would be horrible on Ty, and I wouldn't dream of leaving his living decisions to a stranger.

5 years ago I left Tyler at the kitchen table of his new home...with someone to watch over him that was not me.  For days I thought the absolute worst, and to a degree that was exactly what was happening.  I was being pulled away from my co-dependency and so was Ty.  We both experienced anxiety that was consuming and terrifying enough to make anyone consider themselves crippled by it.  But time marched on.

Within about a year, we both turned a corner.  But I still remember some very shrewd advice I was given prior to the transition.  The person told me "residential homes will be a 50/50 relationship of love and hate.  She was absolutely correct.  50% of the time things are smooth and 50% of the time you wonder what the hell is the matter with people.  

Now, 5 years later, we count our blessings.  Tyler is relatively healthy and happy.  There are people assigned to him that have accountability to do the right things.  There is a TEAM of people now assigned to what my wife and I tried to do ourselves.  BUT...we have things we must remain diligent about.  Doctor appointments seem to get postponed, turnover is high and compromises trust, and people must be thrown in without a real working knowledge of the client.

In five years I've learned more lessons than I can count.  Ty CAN live without me in the right scenario.  I will never be any less of an advocate or defender of Ty regardless of where we are.  When you have good staff members, love them and protect them.  Looking out for Ty's future, and the future of the rest of the family is not anything to feel ashamed over.  And for God's sake don't ever stop fighting.  Be fierce and never waiver.  

If you are agonizing over the decision to release your special child to residential care, please reach out to me.  The decision needs to be based on facts and not the emotion of it.  While that is a million times easier said than done, it is the right way to be a steward for your loved one.

Be well and God bless.   Tom

The Sunshine Chapel

I often write about things that I see around me in my own walk through life.  Sometimes these nuggets come from my religious experiences, one of which I will talk about today.  

The older I get, the more I seem to find comfort in a natural approach to my belief in God.  What I mean is, I find spirituality in simple and natural things like the woods, the beach, family, friends, etc.  These things touch me in deeply spiritual ways because I feel God's presence in them.  I believe that God intends us to be in harmony with one another and with the goodness of the earth he created.  When I hug my family and I feel that love, I am one with God.  When I walk on the beach and enjoy the magnificent creation in front of me, I am one with God.  When I go to work every day and serve my fellow employees by keeping them safe from harm, I am serving the purpose God intended me to serve. I'm at peace with this now like never before.

On the flip side, as I find myself more in tune with this natural approach, the less I feel in step with organized religion.  Overall, I believe that organized religion has become lost in the trappings of the material world.

Sunday we discussed how we are to use truth and dedication to God as our armor against evil and sin.  A message that I certainly agree with.  We all sin and we all lie, but if we all dedicated ourselves to trying to always be truthful, we would find a world that could turn itself around.  We talked about how what we see everyday through news and advertising is made to bend the truth, twist it, and use it for underlying purposes.  Again...you get no argument from me.  Now more than ever, we are being taught that stretching the truth is normal and acceptable.

But organized religion does its own form of deception and fails to fully take account for it.  The Catholic religion is still finding the depths of their sexual abuse toward children.  Imagine how many lives have been destroyed by the very thing intended to save them.  Turn on your television at 6am on any Sunday morning and I promise you that there will be "preachers" telling you to sow $1000 seeds and you will suddenly have the bank forgive your mortgage and checks appear in your mailbox.  Evangelicals still nearly unanimously support the Trump administration who are deeply undermining the country by lying about election fraud that has for nearly a year been disproven over and over and over again. I've yet to hear this addressed by religious leaders.  

Organized religion hasn't attempted to harm anyone, and it certainly does have many wonderful people who do many wonderful things within it, but make no mistake, as an institution it chooses its battles very carefully.  Lies are to be called out as long as they are certain lies, but not others.  Politics and religion run very closely together, although they will largely deny the co-existence.  Being outspoken about certain sins from certain people while quietly turning away from others is a pattern that has become more and more the norm.  

This is where I look at my son and I think about what brings out the good in him.  He is at peace when he walks in the sunshine, when he feels the love of another person, and when he feels security around him.  I believe that he is a shining gift from God because he is allowed to live in a simple way, free from the desire to be deceptive or feel the hurt of being lied to.  He appreciates the beautiful things he can see, without the noise that the human world has established around it.  Is there any reason why I wouldn't want the same for myself?  As has been the case so often, I've so much that I learn from him as life goes on....

Be well and God bless.   Tom

Time

Time is a comforter that tells us we will heal

It offers the promise of long and happy days

We look forward to the secrets it will reveal

Like paintings swirled with lights and grays

Time is a master of lies and crude deception

Watching us grow old and crooked like trees

Fading memories and heartbeats without exception

Reminding us there were never any guarantees

Time marches forward without the slightest care

The ground rumbles beneath its strides

Merciless and ignorant to what is fair

Bringing forth and wiping away like storming tides

Time can be gentle and soft like a lazy cozy nap

Where breezes and sounds surround the room

Sunshine on a wooded path or a puppy on your lap

Or rainy day popcorn and movies to chase away the gloom

Oh time is what we make of it, this is sure

We cannot stop its march but we can embrace it

Our mission is not to simply survive or to endure

But to come to the starting line and race it

Pieces of Me

 I've always been a deeply sentimental person.  It just seems to be part of my nature.  When I receive a gift that is personal it is something that I hold in extremely high regard.  

My Dad gave me a watch a few years ago that I will never part with.  The painting of Tyler by the ocean is an heirloom that I hope to pass through the generations.  I have a Christmas ornament which is really just a photograph of my Grandfather with cotton balls stuck on it to make a Santa beard.  These are some of the things that I cherish because they came from the heart of someone special to me.

I received such a gift today.  A few of my friends at work have listened to my ongoing saga about trying to find a small condo at Myrtle Beach.  This is something I have dreamed about for over a decade.  I've also talked endlessly about how much the beach means to me and how it puts me closer to Tyler because of the time we spent there.  Recently, we have found a little place close to the beach and we are so excited to be working through the process of finalizing it.

I was surprised when one of my friends, Kevin, told me that his wife had a house-warming gift for me.  Now we all seem to share great, biting, and sometimes cynical senses of humor so I wasn't sure exactly what to expect.  But his wife, Christy, is a very thoughtful and articulate person so I was intrigued at the thought.  Today Kevin pulled me to the side and said Christy was dropping off my gift.  I felt a little embarrassed, after all, they are a young couple just buying a new house of their own so surely they have better things to worry about than me and my silly beach condo.  But there she soon was, presenting me with my present.  

She explained that this was no ordinary shell, but that this was a shell she found over 10 years ago in Cape May.  She was just walking on the beach and couldn't believe she found this big, beautiful shell.  She has kept it every since and cherished having it.  She said that when she heard about Tyler's story, and our story of holding memories of our beach time with him, she wanted for me to have it.  

It is a beautiful shell, but it means so much more because it was a piece of her and Kevin.  It is a piece of her story that she wanted to become part of our story, and I can't think of anything cooler than that. This shell will have a very special place in our new home and will undoubtedly become a story we will share with others.  

This piece of her, and piece of my friend Kevin, is now a piece of our family.  It is a piece of our story. And as such, it is worth all the gold in the world.  

Be well and God bless.   Tom

Don't Forget to Dream

 To my daughter,

My beautiful and stubborn Sam....you are so much like me.  As you move through your life you will find that our particular way of thinking makes the good times very good, and the bad times very difficult.  But you will also find that every joy and pain is worth the trip.  There is something I want to tell you today, and that is to never stop dreaming.  

When I was about 8 years old, I dreamt of playing for the Phillies.  I was a solid young baseball player and I just knew the Phillies would want me at second base. Within a couple of years I had become a good young bowler.  My dreams suddenly shifted to become a world famous professional bowler.  I imaged being on TV and becoming a legend in the sport.

While these dreams may have been true longshots, they were extremely important at that time.  I didn't have a ton of friends in school but those teammates I had outside of school were my family.  Because I was very small I had to endure some bullying at school but I knew in my heart that I was good at other things.  I was driven to make my dreams come true so I could show the world what I could really do.

Even though my early dreams didn't come true, I always found a new one.  You see, dreams should be big and seemingly impossible.  Dreams don't always happen, but they should be incredible if they come true. If they do come true, or even come close to coming true, they should change your life forever.

After my bowling dream, I lost sight of dreaming for a while.  One of the few things that made me happy was writing.  I found myself dreaming that my writings would become public, and actually help the people that read it.  Soon I had a blog with over 50,000 views, and then I had a magazine article, and then a national website article.  I also began getting feedback that my words were helping people.  Some people commented that my writing spoke for people in ways they were not able to do for themselves.  Hearing that touches me beyond words.

I wasn't done dreaming yet.  Over the last few years I wanted a little beach place to call my own.  I wanted a place where I could be at peace and reflect on the many ups and downs we experienced over the years.  It was a bog dream but I was persistent.

It appears that this dream is on the verge of coming true.  Nearly a year of financial management, hard work, and perseverance is very close to paying off.  Even at 51 years old I needed to dream.  I needed to have a goal bigger than the every day grind that had become my life.

So Samantha, I want you to always have a dream.  Make sure it is big and nearly impossible.  Make it bigger than anything else in the word around you.  Most importantly, make sure you enjoy the ride to get to your dream.  Even if the goal doesn't exactly happen, you will learn so much along the way.  

But one day, maybe if everything lines up just right, your dream will come true.  If it does, your life will become more fulfilling than you ever imagined possible.  Dare to dream.  Never lose sight of your dreams.  And never let anyone step on your dreams.  Be the brave person that I know you to be, and I promise you that dreams will come true.

Love.  Dad

Servant Leadership

This week our company welcomed a new Operations Manager to the fold.  JB has an extensive military and manufacturing background, which should fit very well as we continue forward. 

As with any new person, I was mostly open-minded while slightly apprehensive.  Fortunately he seems like a good guy with a willingness to learn what we are all about.  As we were having an early conversation, I was talking about how I would be cooking on the grill for our employees the following week.  He liked the idea and put it into a term that I hadn't used before, "servant leadership".

Today we had an ice cream truck come and serve Italian ice, ice cream, and gelatos.  While the employees were being served, I greeted each one and thanked them for working hard and working safely.  I took the opportunity to talk with employees that I scarcely know, and joke with those I do.  With each handshake and fist bump it helped to relieve the stresses we have endured during and after the pandemic.

While chatting with the employees I couldn't help but think about that term over and over again.  Servant leadership.  Nothing that I do is more important in my job than serving the others that work there.  I am there if they have concerns, or need an injury tended to, or need advice.  

Lately we have experienced difficulties with Tyler's living situation.  There were times where emotions were easily able to take over and make decision-making more challenging.  It would have been easy to allow anger and frustration speak for me, but I needed to think about what was best for Tyler.  I needed to be a servant leader to him.  What is best for him?  How do I improve his situation in the short and long term?  What would HE want me to do?  As it turns out (in a story to be told later), Tyler has been able to begin recovering from the difficulties because this approach was taken.

The last few days I ran into an old friend DC who was doing some work in our place.  DC is used often in his line of work because we know he does an honest job, and is very good to work with.  He returns calls, deals with customers politely, and puts pride into what he does.  We had a nice conversation catching up, which was a stark reminder that we all deal with sets of challenges that most people never see below the surface.  And yet, he is treats people right.  He is a gentleman and a professional in every sense of the word.  He obviously understands servant leadership.

Another work friend I have is SR.  She is an executive assistant who takes care of the people around her.  I am not an executive, but she doesn't care.  If I need her help I know she is there for me.  But even more importantly, she is always there to encourage, appreciate, and comfort me whenever I need it.  Its not unusual for her to send me a short e-mail telling me how much she appreciates the job I do.  And it always seems to come at just the right time.

All of these people and my conversation with JB reminded me how important servant leadership is.  It puts the other person first.  It builds the other person and makes them better.  It lifts our world just a little bit.

We need to remember as we serve our special needs loved ones, families, friends, and strangers, that to be leaders we should reserve ourselves to be servant leaders.  We should teach others how to practice servant leadership.  It will truly help this world to be a better plaee.

Be well and God bless.    Tom

Telling Tyler's Story

You don't have to know me for very long to understand that Tyler is a source of tremendous love and pride for me.  In fact, being a Dad to Tyler and Sam is something I feel honored to be.  They are gifts from God that I cherish every day.

This week I collaborated with Salt Life (you probably see the t-shirts and car decals) to tell Tyler's story and his love for the ocean.  I am beyond excited and honored that they chose to publish an article about him.  My hope is that it shows how wonderful being a father is, and how our special needs children can tell an amazing story and be amazing people, even when they cannot speak for themselves.

Tyler.....this one is for you buddy.  Special thanks to Salt Life for giving me the best Father's Day ever.

www.saltlife.com/the-daily-salt/lifestyle/tyler-and-his-dad-living-the-salt-life

A Post By Allen Schneider

Today I wanted to share the link for a post by Allen Schneider.  Allen is an incredible father and an amazing spokesman for special needs dad's everywhere.  His entire family takes the word "inspirational" and redefines it.

https://www.theautismdaddy.com/the-finish-line-my-most-difficult-day-as-an-autism-dad/?fbclid=IwAR03OKvBgTymohj5_7EtF6Z3-G96eWQHbm9b4vTb7FSRck3PXkbtQhc91e0

The host of this particular post is Frank Campagna, aka AutismDaddy, who is an incredible inspiration in his own right.

I can tell you that one of the most difficult thoughts that special needs parents face is how to manage a disastrous event with your child in the line of fire.  I can't possibly count the number of nightmares I have had where I can't save Tyler from something happening.  Its my mind playing out the fear of being helpless to save myself much less to save him.  Its the pure weight of being totally responsible for another human being manifested into terror.

Allen and his family have found running to be the most special of outlets for their boys and their lives seem much richer because of it.  But this story details their experience on the day of the Boston Marathon terrorist attack.  

The blog is so well written, and so intensely familiar to my emotions, that I could feel myself taking the journey with them, nodding all the way.

Please click or copy-and-paste the link.  Also buy their book "Silent Running" which is just as amazing as today's blog.

Be well and God bless.   Tom

Tribute to Dick Hoyt

Dick Hoyt was a giant.  The world is a lesser place for having lost him this week. 

If you aren't familiar with Team Hoyt, Dick's son Rick was born with cerebral palsy in 1962.  The family was immediately encouraged to send Rick to an institution as there was no hope for him to be more than "a vegetable".  His parents held out hope because they saw something in his eyes that only parents can see.  With time, perseverance, and love, Rick learned to read, went to school, graduated college, and worked to develop special needs communication devices.

In 1977, Rick learned of a classmate who had become paralyzed, and he wanted to help.  He wanted to show his friend, and the world, that life can go on despite profound disabilities.  He and his father Dick ran their first race.  Rick told his father "Dad, when I'm running, it feels like I'm not handicapped".  That would be the beginning of a remarkable journey.

Dick would train (he was not a runner prior to the 1977 race) and build his endurance.  In all, he and Rick would run 72 marathons, including the Boston Marathon an amazing 32 times.  They competed in 1130 total events over the span of nearly 40 years. 

  

"Inspirational" is an oft-used word and I'm not sure it scratches the service of what Dick and Rick mean to the special needs community.  I watched a story on them once (I believe it was an ESPN story) and was in awe of the love and dedication between father and son.  They had found their way of leaving "disability" behind and simply tilted their heads into the wind and enjoyed freedom.  

I did not know the Hoyt family, but am part of the same special needs family with them.  Whether we are writing blogs, creating Muppet characters, writing books, or running races, we want to help our children leave a special mark on the world.  We want people to see that we are strong, thoughtful parents that our children are incredible people for what they can accomplish and mean to others.

God bless you Dick Hoyt....may you enjoy a long and peaceful rest.  You've earned that and so much more.

Visits with Tyler

We were able to visit with Tyler a few times over the last two weeks.  It had been 11 months since we were last able to see him in person, which was extremely difficult.  Fortunately with everyone adjusting to new protocols, we have been able to make brief visits with him.

Our first visit a few weeks ago was nerve-wracking, at least for me.  I knew he would recognize us, but would he become overwhelmed emotionally by seeing us again.  After all, he doesn't have any idea how long it has been, or why it might have seemed like such a long time.  We showed up with masks on which probably wasn't going to help matters.  He was somber.  It appeared this was likely his mood before we arrived, and our presence did nothing to change this.  He looked up a few times and stayed mostly expressionless and quiet.  We tried coaxing some words or expressions out of him but it wasn't to be.  After about 30 minutes we said our goodbyes and left.  We wanted to feel some sense of optimism from it all, but those attempts felt hollow.  The truth is, we were devastated to seem him looking grim and lonely within himself without the power to change it.  These changes in him began appearing long before COVID, but the pandemic has certainly exacerbated it.

Our second visit this past weekend went much better.  It was a beautiful, but cold day, so we took him for a drive-thru lunch and a drive along the river.  He seemed much more awake and responsive this time.  His sister asked if she could buy him a milkshake as a small token of her loving and missing him.  Of course we allowed her to, and he enjoyed every drop. Tyler also enjoyed the nice long drive along the river and rural areas heading back to his home.  I did notice some emotion in him as we settled him back into his chair, as though it was hard for him to transition from us back to the house again.  The ride home was more optimistic this time with all of us looking forward to the small things we can do on future visits.

I wish I didn't bounce from heartbreak to joy so quickly.  Seeing him places me in an emotional spin that makes me dizzy.  I love seeing him, especially when I can see that we are lifting his spirits.  But those days where he is somber and emotionally out of our reach, it is soul-crushing.  It is so difficult to explain because of how difficult it is for me to make sense of it myself, but jumping back to the hyper-vigilant mindset for such a short period of time is disorienting and scary for me.  Its like when I pick up a bowling ball after a couple of years....things that were automatic are now strenuous, and what seemed effortless is now clunky.  It might look similar to how things used to be, but they are very different.  

There is much upside to think about however.  We are now able to see Tyler and make sure he knows we are still here and that we still love him.  He has maintained his health and is ready to expand his life again when the time comes.  And warmer weather is not too far away so we can look forward to short walks and fresh air with him.  

Be well and God bless.  Tom  

Cool Things out of the Blue

Sometimes, even during these difficult times, cool things happen out of the blue that remind you that positive things are still all around us.  We are certainly in dark times right now, but sometimes a beam of light finds its way through for no apparent reason.

Today I saw a notification on a messaging platform but I didn't recognize the name.  I clicked on it and read one of the coolest messages I've seen in a while.  A gentleman was leafing through an old elementary school yearbook and saw Tyler's picture.  It made him remember Tyler fondly, especially his good nature and kindness.  Think about that, he still remembered Tyler 20 years later.  He went on to say he wanted me to know he enjoyed the blog and was thinking of Tyler and the family.

How absolutely cool is that?

I think it shows how much we all impact people's lives without perhaps realizing it.  And we impact those people through our demeanor and our actions, not necessarily by what we say, how smart we are, or the materials we have.  Its flattering to thank that Tyler may have contributed a small piece to this person's development and helped to shape him in a positive way.  Obviously this person is unique in that he was willing to reach out as a completely unknown person to just say hello and give a fond memory of Tyler.  Whether he realizes it or not, I won't ever forget that.

Sometimes our world is very dark, and my writings and my thoughts are dark as well.  I'm human and I express things the way the world effects me.  But there are good people out there who value empathy, compassion, and respect for one another.

Thank you "L" for the pleasant reminder.

Be well and God bless.    Tom

End of Days?

 Someone recently asked me if I believed the pandemic was the beginning of the end of days.  Surprisingly, as opinionated as I am, I could not offer an answer.  It would be easy to dismiss the notion, but I am not that confident.  I recognize that there are forces much larger than I who have that answer.

So what do I actually believe?  I believe that whether this is part of the end of the earth, or simply a part of the human experience, we are being watched and evaluated.  

Let's face it, none of us have ever faced a test of this magnitude.  The loss of freedom to move about as we please, the loss of educational opportunities, the loss of resources, the loss of family members, the loss of close contact with other humans, and on and on.  

There are 2 life lessons that come to mind.  First,  true character is shown by what we do when we think nobody is looking.  In other words, we are only as good as what we will do, good or bad, when it is just us and our inner most gut that will know the difference.  When there are no outside influences, who are we REALLY?  I have mentioned this in my previous posts but it bears repeating; my dad has certainly not been a perfect father (none of us are) BUT he has instilled in me one very critical lesson, which is the fact that if you don't have your word and your integrity you don't have anything.  He taught me that regardless of how brutally right or wrong we are, we owe it to ourselves and everyone else to look them straight in the eye and be exactly who we are, and deal with it.

Secondly, true character shows up in the worst of times.  It is easy to be strong when things are within our control, but true character comes when our backs are truly against the wall.  The main question is: did we think of ourselves first, or did we think of others?

Unfortunately, in large part, we have failed this test spectacularly. As children, we are taught that the human soul is much more important than money.  We are taught that those who TRULY believe will honor and protect their brothers and sisters before they will protect money.  We are seeing a true test of this belief. 

Every person who argued that protecting others with masks and hygiene was a violation of their "personal freedom" you FAILED this test.  For every person who kept a business running against health orders, you FAILED the test.  For every person who held gatherings and intentionally risked the health of those around you, you FAILED the test.  You all forgot that 10, or 20, or even 30 years is merely a blink of an eye in eternity.  Whether you ran a successful pizza shop or shoe store or bowling alley is irrelevant when the end comes.

We will be judged by how we protected one other.  We will be judged by what we were willing to sacrifice for one another?  We will be judged by what we did when things were at their darkest?  Where we selfish?  Were we worried about one another, or by "personal freedoms"?  

Will you be able to hold your head up, look our savior in the eye, and say that when the darkest days were upon us you stood tall and protected your fellow man?  Will you be able to say that you pushed selfish and earthly needs aside?  

Be well and God Bless.    Tom