Why Words Matter

Words matter.  Words can be a powerful and wonderful tool to inspire others.  Words record who we are and where we have been.  We can use words to comfort our friends in their time of need.  How often does a smile and a kind word from a stranger make us feel good about ourselves?

Some of my fondest memories in the years Tyler was at home involve times when strangers expressed kindness and compassion toward Tyler.  I remember being in a restaurant and an older couple approached our table on the way out.  The gentlemen asked if he could give Tyler a few dollars because he was inspired by how well behaved he was.  Those are the experiences that stay with me as though they happened yesterday.

Words can also be devastating.  I remember how we felt when a caregiver told us that a young boy and his father made fun of Tyler when she took him out to eat.  Fortunately Tyler didn't realize he was being mocked, but it hurt to know that someone would do that to him.

There are many of us who are leaders in one form or another.  Some lead families, congregations, businesses, towns, states, or countries, and I truly believe it has to start with all of us.  We have to be aware of what we say, and how we say it.  We fool ourselves that people like Tyler don't hear us or understand us, but they do.  They are hearing what we say, and watching what we do.  That's why I believe we need to speak to each other like our sons are listening, and our daughters.  When we stand before them and represent something, we owe it to them to do it with dignity, love, and humility.  Unfortunately it seems we are seeing less and less grace and more and more contentiousness.  For Tyler, and for everyone who so desperately needs us, we have to stop this cycle.

Words do matter.  Its time that we remember that,  and its time that we use our words to bond, and to heal, and to teach the right things.  Our children deserve that.  Tyler deserves that.

Be well and God bless.   Tom 

Not Gonna Miss You

Good Evening,

I try on occasion to recommend movies or documentaries that I feel somehow break uncharted territory in the caregiver experience.

See "I'll be me" for an amazing journey.  You will nod your head, laugh, and cry.  You will appreciate how an amazing and complicated man can suddenly become vulnerable and dependent on his family. And as you watch this transition you will recognize every one of the emotions which range from loyalty to exhaustion.  From courage to fear.  From hope to reality.

Glen Campbell was a complex and talented man.  He was far from perfect.  But when a diagnosis of dimension threatened to end his life story, he and his family decided to take charge of the final chapter.  The result of this decision was a perfect representation of what a caregiver and the cared for experience as the disease ruthlessly marches on.  It's a story of love, devotion, decline, and loss that we will be forced to face for ourselves,  But it is also a testimony of what it truly means to be devoted to a person with special needs.

Sad News In Oregon

Caregiving can be an amazing and wonderful experience.  This applies regardless of whether we are giving care to our children, parents, siblings, or anyone else who relies on us every day.  But those who live this role understand that there is a dark side.  

On Monday a single mom in Oregon fatally shot her 7-year-old disabled son, before attempting and nearly succeeding at killing herself.

My heart is breaking for the boy whose name was Mason.  According to the article, Mason dealt with severe mental and physical disabilities.  His father left the family right after his diagnosis.  He was home schooled by his mom because she didn't feel he could thrive in a public school.  As a single mom she was forced to live with her mother just to make ends meet.  She was described as an amazing mother and an active advocate for families with special needs.  According to friends there was nothing she wouldn't do for her son.

Its easy to take a holier-than-thou stance and condemn her.  It would be easy to consider her a monster or a coward.  The truth is she must have felt pain and desperation that few people can imagine.  She may have felt suffering, and watched her son suffer in such a terrible way that she wanted both of them to be at peace.  Its frightening when you consider that everyone close to her thought she was doing okay.  The public face that she put on must have been pretty incredible in order for her to hide such pain.

We should consider all caregivers, especially those doing it long term, as a risk for suicide. Worse yet, we should consider them a risk for homicide/suicide.  What she did was wrong and Mason had a right to life like any other human being, but I think it is important for us to understand why this happened and somehow use it as a lesson to prevent the next one.  She was able to tell herself that this horrible act was somehow going to make things better.

There are so many factors that can be looked at.  Perhaps trying to be all things...a mom, a wage earner, an advocate, had overwhelmed her beyond her tipping point.  Perhaps being abandoned by Mason's father made loneliness unbearable.  Maybe she spent every day watching him struggle and should couldn't do it anymore.  Maybe she saw herself in her late 20's with no foreseeable future for herself.  My bet is it was a combination of all of these things.

Maybe we need to invent a caregiver suicide hotline for those who are considering this as a solution.  Obviously she did not feel she could talk about this with friends and family, but maybe she could have confided in someone who has been there.  Sometimes you can tell things to a stranger that you can't tell to anyone else.  Make absolutely no mistake, this is not an isolated event.  I dare say most long term caregivers have similar thoughts.

We can discuss the reasons all day long, but the fact still remains that caregivers need people to check on them.   They need to feel that their well-being is important to others.  They need to know that alternatives are out there, other people who feel the same things are out there, and solutions are out there.  It doesn't matter if they appear to have things under control...we need to help them.  When we wait until there is a tragedy it is much too late.  Often the cry for help happens in the last moment and we can't afford to let that happen.

This entry is dedicated with love to Mason Jordan who had his life cut too short, and to his mom Tashina who so tragically lost hope for herself and her son.  May God look after and protect them both.  My heart breaks for you both.

Be well and God bless.   Tom

Anger With God

Sometimes I share questions I receive from readers or other people in our circle.  For the most part I feel comfortable about my answers because I have the underlining notion that I always gave Tyler my best whether being brilliant or making a terrible mistake.  This particular question I haven't fully thought through because it isn't easy: have you ever been angry with God over Tyler's circumstances?

My answer is.....yes and no.

I've had a difficult relationship with my faith.  I try to remember the things that I'm taught, like Tyler has wonderful gifts and I have discovered wonderful things with myself.  You would think that this makes faith a slam dunk.  But then I flash back to memories of hospitals, surgeries, aggressive behaviors, tears, anxiety, and panic attacks.  I see the little boy laying on a hospital bed being held down by his Dad, who he trusted more than anyone in the world, so that a doctor could prod his brain shunt with a needle.  That little boy, red faced in fear looking for his Dad to save him and not understanding why he is holding him down.

It tore my heart apart then, and it tears it apart 20 years later.  I don't know how to make that go away. I can't find the right sermon or hymn that makes that ok.  How do I find faith in that moment when Tyler looked at me and said "Dada" over and over again not understanding why I wasn't helping him?   I want to...I try to...I just struggle to find it and keep it.  I can't help but think of our children who go missing, are sold into slavery, who's homes are riddled with war, who starve, and who suffer from poverty and disease,

Through all of those thoughts I look at Tyler and see the influence his life has had.  He is helping to put Bibles into the hands of those who need them.  He has inspired countless people in this blog.  He inspired children in his school.  He is a blessing in so many ways, and I am thankful for him.

I continue to search for a way to reconcile those two things,  perhaps I don't have enough faith, perhaps my empathy gets in my way, or perhaps I'm just a mortal who has mortal weaknesses.

So my answer remains...yes and no.  Yes I get angry when I think about what he has been deprived of and what so many others struggled with.  And no, I love Ty and would never trade him for the world.

Call me a work in progress.

Be well and God bless.  Tom

Russian Sugar Cakes

Good evening.

First of all I want to announce that My Walk With Tyler has 57,000 views.  All I can say is a thank you from every inch of my heart.  Tyler means the world to me, and to see his legacy and impact on this world continuing on brings my caregiving experience full circle.  Thank you all so much.  I speak for Tyler as well.

Tyler's Bibles has been an awesome success.  We continue to receive donations and gifts from Tyler's fans!  Recently we have done a fundraiser where my mother-in-law bakes her famous sugar cakes for $10 per dozen.  My job was to sell orders through my undeniable charm (cough...cough) and stay out of the kitchen when they are made.  My mother-in-law my be short but I don't mess with her!

But I want something almost as cool.  With so many blog readers in Russia I want to send a free dozen for the first Russian reader who responds.  Send an email to Tom300824@verizon.net and if you are the first Russian to request a dozen sugar cakes I will send them free of charge.

Despite the world climate and politics, disabilies are a universal struggle, and 57,000 loving, wonderful people prove that.

Be well and God bless.    Tom