Tag Archives: compassion

Happy Mourning: Grief-ism #1

Those grieving a loss hear this one often, “But he/she would want you to be happy.”

So what does this really mean? Don’t grieve for them? Pretend the one human, who for the most years and who gave the most meaning and joy to life, is still here?

Impossible!

The thing is, no one gets to tell you how to grieve. Not even your deceased person. Not even THEY get to dictate how much you hurt or how much you miss them because they’re gone.

Would Mike want me to be happy? Of course. One of his goals in life was to keep me happy (and I him). But neither of us could ever know how hard it is to be happy without the other.

We don’t know how to minimize the giant hole that just opened up and sucked everything that was normal, safe and stable into it so mourners resort to masquerading happiness because that makes everyone around them back off and feel better.

The fresh, horrid grief of those early days has subsided and I finally experience moments of happiness. Small rays of light in the darkness that is Mike’s absence. But it’s taken this long and still, after all this time, an underlying operating system of continual sadness runs in the background of everyday life.

And that’s the point. We can’t rush people back to cheering up or looking on the bright side. The bright side looks bleak and dim for someone who has suffered such monumental loss. Rebuilding an unwanted life from the ground up takes time.

Trish Harrison Warren, author of Prayer In The Night: For Those Who Work or Watch or Weep, says, “We are taught to minimize grief.”

Allow grievers the time they need to be in their sorrow, let the trigger tears and heart crushing pain play out. Weep with those who weep, for as long as they weep.

Eventually we will rejoice with them, because we stayed around long enough to see them discover joy again.

Only then are we better practiced in comforting the broken hearted.

Introduction To Grief-isms

So what are grief-isms and why do I think it’s essential to talk/write about this?

Grief-isms are a term I created to describe the cliched sayings we use when someone experiences a profound death loss. Most of these axioms I found unhelpful, non-comforting and sometimes annoying, especially in the early days and months of my experience.

At first I thought I might be a bit crazy but after talking to many people who have had significant loss, especially of a close relationship – spouse, child, parent, sibling, best friend – attending GriefShare group multiple times and following several internet based widowed, grief and loss groups the past several years, I realize I‘m not alone in this opinion.

First of all, not one of us can fully understand death grief, especially early stage, until it’s experienced. And no one knows how they’ll react in it until it happens to them. I‘ve compared it to someone telling me how to labor and deliver a child to actually doing it. There’s knowledge of what it might be like, then there’s being up to your eyebrows in the middle of it. It’s overwhelmingly intense and painful! And you gals who’ve had a baby or two know exactly what I mean.

It’s extremely important to know how intimacy and closeness drive the level of grief when trying to support someone through a loss. The depth and duration of grief is equal to the intimacy and duration of the relationship you, your friend or family member had with the person who has died. They will grieve harder and longer for a child, spouse or family member, than an acquaintance or non-immediate family member rarely seen.

Also important to understand, is how intense grief effects lessen with time but never totally disappear and anything can trigger a fresh but (probably) shorter response. There is no proper time frame for a person to ‘get over’ a person who has died and ‘move on’. These are also cliched terms that should always be avoided.

All the love, investment and history you have for and with a person doesn’t fade out or shut off once they’re gone. Like I keep saying, There’s No Off Switch! Our people become an intricate part of us and have shaped who and what we are. Forty two years of life with my late husband and four years without him is a no win comparison and I can’t just move on to a happy, slappy brand new life as if he never existed, once the memorial service is over or the headstone is on the grave.

I‘m not here to demoralize or criticize any of us. No one wants grief education. Who in the world volunteers to join the ‘someone I love with all my heart has just died’ club? We don’t like talking or thinking about being without our best people. I get that. Since Mike was a pastor I was exposed to death, funerals, burials and the depths of human sorrow more than most. I realize now I was often just as clueless as anyone, in the face of another’s suffering and said some of these same cliched statements to people in their loss. I openly apologize to you if you were one of these people and hope you can forgive my previous ignorance.

If we all live long enough, we and others around us will likely loose someone dearly loved, so it’s crucial to practice being good comforters, to know how to be with another in their deepest pain.

The purpose of the blog posts that follow is to share my heart around some of these specific grief-isms and why they weren’t helpful. I pray this information will help all of us be better supporters of the grieving when the need arises.

Coming up next: Grief-ism #1, “He would want you to be happy.”

Just Be There

Jon is often a night owl and I sometimes try to be one with him, just to be with him. A few late nights ago, I was lying on the sofa watching determined chefs attempt to cook their best dish in a ridiculous amount of time, competition.

Jon was rustling around in another part of the house.

At one point he came and stood behind me and began repeating, “He’s gone. He’s gone. He’s gone.”

I‘m never sure if Jon is parroting a movie line he’s heard or trying to express a thought. I turned the TV volume down.

“Who’s gone, Jon?”

More repeating, “He’s gone. He’s gone…”

I asked again.

“My Dad. He’s never coming back.”

Grief does not play out on a short path. The journey is long and arduous. We have moments now, when we laugh and smile, but there’s still a pile of sad and edgy and raw and vulnerable. There’s still many days it’s difficult to wrap our brains and hearts around the truth that Mike is missing from us.

My son in his simple, yet profound voice has stated, here we are, still struggling.

Where will this journey take us? I don’t know. I do know this. When our son was born, I had to become an advocate for the disabled. A few years later I was run over by chronic illness and eventually took up the banner of reclaiming health through lifestyle choices. Now that close and sudden death has taken my breath away, I will become a spokesperson in this modern, sanitized, look the other way, death and grief illiterate western culture, for those whose hearts break. For those who walk the long, shadowed path of living after great loss.

If it’s true that our mess becomes our message, then it appears I’ve been given something to share. I volunteered for none of these difficulties, (I mean, come on, who does?) regardless, I’m learning our brokenness is not to be hidden or disregarded, but is meant to come along side another, reach out, weep, hug, love with feet and hands on, encourage, and proclaim, “I don’t have all the answers. I don’t know how to fix this but I will not run from your pain. I will not ignore your struggle. I see you and I am here.”

In the time of His greatest sorrow, Jesus wanted his friends near him. As he grieved and struggled with what was ahead, he longed for human companionship. Near-ness.

“What, you couldn’t even stay awake with me for one hour?” (Matthew 26:40) There was nothing his follower friends could do to change what was about to happen but He needed to know they were there for Him.

I have come to believe our main calling and purpose in this life is to walk beside each other in all of it’s joy and brokenness. To show up. To just be there.

Do that for someone you know today.

And I pray, if and when needed, someone will do the same for you.

2 Corinthians 1:3-4 “Blessed be the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.”

(In)Dependence Day

It’s July 4th. USA’s Independence Day. A time to remember our journey of becoming a nation. The day we celebrate our historical release from the rule of a British monarchy.

This land was founded on independence, which in many ways is good. It holds each of us responsible for our own choices, our own path and fuels much of the creativity, innovation and freedom we enjoy.

Taken to the opposite extreme, however, it’s not good. There we come to believe, “I don’t need anyone. I can do it my way. Don’t need you. Won’t listen to that opinion. Not letting anyone else in.”

There all sense of community is lost. The desire for belonging, every human craves, is gone. We are no longer our brother’s keeper. We isolate, judge, withhold.

We are meant to be the hands and feet of Jesus in this world. Literally. Physically. Not just talk but action. Will we ever perfect this on Earth? Probably not. But we are always meant to try.

We don’t have to rescue the entire world, only help the one set before us. Today. In whatever form that may unfold. Anything from a simple hug and smile to:

“I’m sorry you’re going through this. I’m here to listen.”

“Can I pick up anything at the store for you?”

“Let’s go out to dinner. My treat.”

“Would you like me go with you to that doctor appointment?”

“I‘m coming over to mow your grass, fold laundry, watch the kids, bring lunch, help organize your garage, clean leaves out of the gutters, paint that room, plunge the toilet or just keep you company for a while.”

There’s so many ways we can help the people whose life intersects ours, some may even require opening our wallet.

Independence says:

“I‘m too busy”.

“I don’t have time”.

“That’s their problem.”

“That’s not my concern”.

“They’ll figure it out.”

“I don’t know what to say/do.”

And a host of other excuses we come up with to stay independent from others.

Dependence requires sacrifice of our time, energy, emotions, money, resources. Love asks, “What can I do to make your world a better place today? Right now?” Then puts action to it.

In it’s rightful context, there’s nothing bad about independence, but there can be a whole lot right about dependence, a dependence on God and each other to get us through this life.

Happy Independence Day to America!

And Happy Dependence Day to Us!

Galatians 6:2 “Bear one another’s burdens, and so fulfill the law of Christ.

James 2:15-16 “If a brother or sister is poorly clothed and lacking in daily food, and one of you says to them, “Go in peace, be warmed and filled,” without giving them the things needed for the body, what good is that?”

1 John 3:18 “Little children, let us not love in word or talk but in deed and in truth.”

Broken Bootstraps

The American Dream was built on a mind set of individualism and independence. The idiom ‘pull yourself up by your bootstraps’ is deeply ingrained in the western worldview and taken to a positive outcome has helped our country and culture evolve into an innovative and creative influence in the world.

The origin of this descriptive phrase isn’t known. It refers of course to boots and the straps that some boots have attached to help the wearer pull them on and to the imagined feat of a lifting oneself off the ground by pulling on one’s bootstraps. This impossible task is supposed to exemplify the achievement in getting out of a difficult situation by our own efforts

There are life circumstances that come along and leave us so weak, broken and devastated we have no strength left to pull ourselves up or out. Our own efforts are dismantled and truthfully God never meant for us to rely solely on our own striving and limited human understanding in life. We are designed to depend on Him and each other.

So what do we do when our bootstraps are broken? Who and what do we rely on when our inner resources are drained?

I’ve been told many times in the past months to ‘stay strong’, ‘be strong’. Not helpful. You can’t be strong when you’re not. It’s like asking someone with broken legs to walk on them. Anyone with logical thinking understands this is a crazy expectation.

These are the times we are to be strong for each other, “Bear one another’s burdens, and so fulfill the law of Christ,“ Galatians 6:2.

What is the law of Christ? Jesus made it clear before He went to the cross. “A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another,” John 13:34.

Loving each other means there will be times we are called on to carry someone else when they are too weak, too devastated, to carry themselves (even Jesus needed help carrying the cross to Golgotha).

It means we will need to cover another with our own faith in their time of lack. We step into their situation, however uncomfortable, not to advise, fix or offer theological cliches, scripture quoting or explanations for suffering, but just to be near, to hold up, to ‘weep with those that weep,’ We show up. We climb into the devastation. We stay for the duration.

We are all meant to be boot straps for one another. There may also be times when we need to be someone’s boots, never mind the straps!

If someone near you is too broken to pull themselves up, pick them up and carry them. Transfuse some of your own presence, strength and faith to another for a while until they are back on their feet.

You never know when you’re own bootstraps might be broken and you’ll need someone to carry you.

“Rejoice with those who rejoice, weep with those who weep. Live in harmony with one another.” Romans 12:15-16

Who Decides!?

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

The 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

I 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.

A Place Called Special

a look inside a special life