Tag Archives: compassion

Who Decides!?

A large number of free wallpaper download, including mobile wallpapers, desktop wallpaper, computer background, 360x640, 640x360, 240×320, 1280×720, 320×480, 480×272, 120×160, 1200×800, 800×480, 960×800, 960×854, PSP Backgrounds, Nokia, 5800, n97, 5230, 5530, n8, iPhone, Blackberry, Htc, Samsung, Motorola, Sony Ericsson ...There’s a battle raging in the UK right now over the life of a little boy. Eleven month old Charlie Gard was born with a rare genetic disorder which, up to this point, has not allowed him to go home. Charlie’s parents have raised over a million and a half dollars to bring him to the USA for an experimental treatment in a New York hospital .

The Pope has even offered to bring the child to a Vatican pediatric hospital in Rome, but the UK hospital took the parents to court and a judge ruled, along with the medical establishment, that Charlie will have no ‘quality of life’ and therefore deserves the right to ‘die with dignity’. He will not be allowed to leave the facility.

I’m trying to decide if this is the evil side of socialized medicine or the reprobate minds of medicine playing god. Maybe it’s both. Since when does a hospital get to tell parents doing everything possible to help their baby, “NO!”?

The term ‘quality of life’ is thrown around extensively in relation to disability. Somehow people in the mainstream, think they have the right to decide what quality of life looks like, acts like and is. It’s one thing if we want to decide this for ourselves and possibly our own loved ones but when we start forcing our definition on others, there’s a problem.

Those of us who love kids with special needs, quickly learn what quality of life really means. They bring quality to life in all the ways that matter most, helping us redefine life’s priorities. All the shiny, glittery attractions that spell success in the world begin to pale as we share life from their point of view.

My son, Jon is content living life his way, though it may not be conventional or understood. When those of us considered ‘normal’ start deciding those considered ‘not normal’ have no right to exist…well, if we know history, we also know where this thought process leads.

Charlie’s parents should be allowed to and applauded for doing everything they can to help their child. If he doesn’t survive that will be God’s decision, not man’s, which is exactly how it should be.

Please pray for the family of little Charlie Gard.

On Whose Lives Matter

Jon SuaveThe topic of lives that matter has been at the forefront of news lately, so I might as well add another group to the fray, one that receives little to no headlines, attention or protests.

In 2013, Robert Saylor, a man with Down syndrome died of asphyxiation after three off duty policemen moonlighting as security guards, restrained him to the floor in handcuffs when he refused to leave a movie theater. His caregiver’s pleas for understanding were apparently disregarded when Robert wanted to see the movie again.

Last week, Arnaldo Rios Soto, a man with autism, watched police shoot his caregiver on a Miami street. Arnaldo had wandered from his group home carrying a favorite metal toy truck in his hand. Someone called the police when they saw Arnoldo, describing him as a man with a gun, acting erratically. His caregiver, Charles Kinsey, was trying to coax him out of the street to safety when police arrived. As Kinsey tried desperately to explain Arnaldo had autism and the object in his hand was a toy truck, an officer discharged his gun at Arnaldo shooting Kinsey instead.

Police officers have protocols to follow and tough judgment calls to make based on their best assessment of a situation and the developmentally disabled rarely fit the cooperation profile. During one of Jon’s wandering episodes he was handcuffed and held in the back of a police car when he failed to answer an officer’s questions or supply his name. To the untrained, the developmentally challenged can be perceived as dangerous and they experience more misunderstandings with police than any other population.*

This week in Tokyo, Japan, Satoshi Uematsu a former employee of a residential facility for the disabled, broke in during the night and stabbed nineteen sleeping people to death and wounded twenty five more. Earlier he had written a letter that stated, “all disabled should cease to exist,” and “the disabled can only create misery.”

The first people exterminated during Hitler’s ‘purify the race’ campaign were not Jews, but the disabled or feeble minded, as he chose to label them. Our Jon would have been the first to die, had we been alive in that decade. It seems no population is exempt from injustice and violence in a world where human hearts trade fear for discernment or choose evil over righteousness.

A recently released movie, “Me Before You,” based on the novel by the same name, is a fictional story of a handsome, athletic young man from a wealthy family who is spine injured in an accident and becomes a paraplegic. It’s meant to be a tear jerker romance, but, of course, I found myself watching this story through the filter of disability and its connection to the value of a human life. The final message of the movie was disappointing, (spoiler alert!) the life of a disabled person is not worth living so the young man travels to Switzerland to die by assisted suicide.

Significance is defined as the quality of being important, large enough to be noticed or have effect or influence, to be worthwhile, valued. Everyone longs to matter. WH Auden, a poet from the 1930’s wrote, “..for who can bear to feel himself forgotten.”

We celebrate celebrity, worship achievement, want to be a ‘somebody’ and leave our mark on the world; a bigger than life personal graffiti wall that boldly states “I was here!” Our culture glorifies importance based on many factors: success, fame, wealth and influence, to name a few.

Disability that achieves the earmarks of worldly success is glorified, but not all disabled persons contribute in ways others consider worthwhile. Does this make their lives less valuable? I don’t have answers to all the tough questions about disability in the world, but our answer to the question of value usually depends on our worldview.

This is mine: “God said, Let us make man in our image, after our likeness..” (Genesis 1:26) and “the Lord God formed man of the dust of the ground, and breathed into his nostrils the breath of life; and man became a living soul” (Genesis 2:7).

If we believe God is the creator, author and beginning of all human existence, there can never be any doubt all lives matter. When Jesus told us to “love your neighbor as you love yourself” (Mark 12:3), He didn’t offer any exceptions, in fact He stated no other commandment was greater. He gave the example of two people groups embroiled in a cold racist war with one another in the parable of The Good Samaritan (Luke 10:25-37), to illustrate what this love looks like.

Violence is a heart issue and will never be resolved until these words of Jesus are understood in the heart of every person and become standard practice.

If we are breathing God’s air on this planet He made, His life is in us, regardless of race, color, gender, preference, ability and age; we are His precious treasure. What others see when they look at us, our outward appearance, is only the packaging for the treasure inside and the wrapping, as beautiful as it might be, is never valued over the gift it holds.

We are significant because God thought we were worth creating. He paid for our life with His, and extends nail scared hands to all humanity as proof of His investment in us and as a personal guarantee that we are top priority.

Jon matters. You matter. I matter. God said so.

And that should be good enough for all of us.

Psalm 139:14-16 “I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well. My frame was not hidden from You, When I was made in secret, And skillfully wrought in the depths of the earth; Your eyes have seen my unformed substance; And in Your book were all written The days that were ordained for me, When as yet there was not one of them..”

Psalm 22:10 “ I was placed in your care from birth. From my mother’s womb you have been my God.”

*”Disabled people are four to ten times more likely to face violent crimes than the general population, including police violence, sexual assault, hate crime, bullying, robbery, and murder. According to the recent Ruderman report on media portrayal of police violence towards people with disabilities, at least one third to one half of all police violence cases covered by the media involves the disability community. ~ “#BlackDisabledLivesMatter vs #AllDisabledLivesMatter” by Pharaoh Inkabuss, blackautist.tumblr.com~

The Unapplauded Hero

super-hero-cape-flying-SupermomI met a Hero the other day.

She is twenty five years old.

She’s put aside her own hopes and dreams to care for a chronically ill family member.

She’s had to quit her job because the care needs are so time consuming.

At an age when she should be having fun, dating, building a future, career or a family of her own, she cares full time for someone in need.

She cries when no one is watching.

She wonders what the future holds.

She worries what will happen to her loved one.

She worries what will happen to herself if something happens to her loved one.

She feels guilt for wanting more.

She doubts God at times.

Her faith wavers even as she continues believing.

She is a full time caregiver. Someone desperately needs her. She is there.

She is learning at a young age the hardship and beauty of a laid down life.

If you are a single young man you might want to consider a woman like her.

She won’t have much time to date, but she certainly knows about loyalty, selflessness and love; all the qualities that make a great spouse.

She’s the unapplauded in the background. One who performs the mundane today, tomorrow and the next day.

But mundane is greatness when executed so selflessly.

Those who are faithful in little things will be rewarded with much (Matthew 25:23, Luke 16:10).

She will be honored for her faithfulness.

Man may overlook.

But God sees.

He sees it all.

He sees her.

She is brave.

She is strong.

She is incredible.

And He calls her Beautiful.

Honey I Blew Up The Kid

I recently read a news story about a mom from Illinois who drove five hundred miles to Tennessee with her nineteen year old developmentally disabled daughter and left her in a bar-just got in the car and drove away without her. The state is not going to press charges because the state’s attorney said they have no precedent for such action and did not know how to proceed.

The mom reported she had been trying for ten years, with no results, to get help with her daughter, who has the mentality of a three year old and was desperate for an alternative living arrangement for her. I guess some folks resort to extreme measures to make a point. The daughter is now being cared for by the state. Comments from people, following the article, ranged from, this mom is a selfish creep who should be strung up by her toenails to actual empathy for her situation. 

The news flash here is not all people with developmental delays are alike. Some are happy and compliant, some are stubborn and unreasonable and a few are downright aggressive and some swing back and forth at any given time through all of these descriptions. Some can work; others can’t or won’t follow the simplest directive. There is a broad range of cognitive ability, personality and behavior on the disabled scale. Most of the adults who get media coverage are those who function at higher levels of ability and do something that was once thought impossible; get married, live independently, become a violin virtuoso or someone like the boy with Aspersers (a form of autism) I recently heard about, who is going to compete on a popular TV game show because he has an astounding memory for facts and trivia. Many in the population, however, require constant supervision and care, and those who are difficult to manage from day to day create unimaginable stress on caregivers, parents, siblings, marriages and families.

You expect a toddler to act like a toddler and you can also pick them up and move them if they’re up to something mischievous or dangerous. But a nineteen year old who behaves like a three year old, might be taller than you, stronger than you and outweigh you and that creates an entirely new struggle that quickly converts to continuous exhaustion both emotionally and physically, leaving a care giver or parent overwhelmed and sometimes desperate. 

Remember the 1990’s movie, “Honey I Blew Up The Kid” which depicted a stereotypical geeky inventor dad who accidentally turned his two year old into a giant? The over-sizedkid roams the town, inadvertently destroying things and putting him and others in harm’s way; developmentally he is incapable of sound judgement or reason. This movie is a somewhat accurate metaphor of the behavior of some adults with mental delays. Imagine taking care of your two year old forty years from now in adult form and you get the picture. 

In an ideal world, people like this mom, would receive all the support and encouragement her situation warranted. While I certainly don’t condone what she did, after thirty plus years being Jonathan’s mom and main care giver, I can relate to her distress. There are too many days when Jon is so moody, stubborn, ornery, uncooperative and unbelievably slow that the minuscule events of everyday living turn into nonstop skirmishes and ridiculous drama. It is comparable to living with a perpetual adolescent.

There are moments when I wonder how much longer I can hold on, how many more years can we do this? But I love our son unconditionally so I put one foot in front of the other, day after day and plod on. When necessary, I count to twenty, fifty, one hundred, pray a lot, sing, ask God for grace, strength, patience, recite scripture, pray some more, look for the humor and laugh as much as possible. I participate in all forms of morally correct and legal stress relief to keep my wits about me

And I write. I tell you the reader, what it’s like in this world so you will understand more, criticize less and possibly be inspired to lend a helping hand or a word of encouragement to a worn out, weary soul.

Many times throughout the four gospels; Matthew, Mark, Luke and John, preface the interaction of Jesus with people as, “He was moved with compassion…”  When Jesus physically left the planet, the responsibility to be His hands, feet and heart in action, to a hurting world was transferred to us. Each of us can make a difference one person and one day at a time by seeing others through eyes of compassion, then inquiring of our own heart what can be done to reach out and give someone a hand or a break. 

That is what Jesus would do and we can do no less. 

Matthew 9:36  But when He [Jesus] saw the multitudes, He was moved with compassion for them, because they were weary and scattered, like sheep having no shepherd.