Monday, December 6, 2021

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

Saturday, November 13, 2021

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

Monday, November 8, 2021

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


Wednesday, October 13, 2021

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