RSS

Tag Archives: bereaved parents

The True Source of Grief Paralysis

19 Jun

Psalm 91 is a mixed-media work of art including the use of watercolor, colored pencil and marker by Sarah Marie


A fellow grieving mother, Sarah Marie, shared the following comments on a closed Facebook page in anticipation of the Heaven Going anniversary of her daughter, Christina Grace. I am publishing Sarah’s comments with her express permission. 

Grief is far more complicated than missing your loved one and fearing they will be forgotten. Please take a minute to absorb the message Sarah shares below.

“This month marks one year since we lost our daughter. If I’m open about my pain, well-meaning people say things like, “She’ll never be forgotten,” or “Thinking of you as you miss your precious Christina.” I know they mean well, but their responses show how little they understand of what we experience. 

Yes, I miss her. And if she was here, I wouldn’t have this particular pain and I’m thankful she’s remembered. BUT simply missing her isn’t what creates this emotional (and sometimes mental and physical!) paralysis. 

It’s the scars of trauma. The anxiety. The loneliness of grief. The shallowness of petty people. The exhaustion that comes from insomnia, nightmares, and the exertion of conversation. The racking sobs I cannot control when I just want to be alone but the laundry pile is daunting and dinner needs made. The ever greater, experiential understanding that I have zero control and the way that changes… everything. 

. . . 

Come, Lord Jesus. Come!”

 
5 Comments

Posted by on June 19, 2017 in Grief

 

Tags: , , ,

Common Thoughts and Feelings of Grieving Parents 

02 May

This morning I opened the Facebook app on my iPad and started scrolling through my news feed. A post from a grief site caught my attention so I ducked over to the loss of a child FB page and started scrolling. . . 

And my heart broke all over again.

As I scrolled through the posts I read such raw anguish. . . 

I heard my own thoughts echo back through the words of others.

Despair.
Discouragement.
Defeat.
How did this happen?
How could this have happened?
Why did this happen?
Who am I now?
What am I doing?
Why can’t I get it together?
How do I go on? . . . Do I even want to?
I’m so angry!
I feel numb. . . detached . . . lonely.
I have no friends left.
If I’m not happy others don’t want to be around me.

And so it goes. . . so many pain filled thoughts and feelings.

And I’ve put my emotional armor on.

I read these things and give a knowing intellectual nod to each one . . . 

But I refuse to draw any closer.

I refuse to engage my emotions.

I can’t shoulder their pain along with my own.

Today, 

I have nothing to give.

My arms are so weighted that I cannot reach back for the one who so desperately needs a hand to hold.

I’m still broken.

And yet,

I feel guilty and ashamed that I can’t formulate words of hope, support and encouragement for another hurting parent.

Not today.

The words just won’t come.

Maybe tomorrow. . . 

But what of all those hurting souls that need a word today?

I am so thankful for the many bereaved parents who step up and in on the days I can’t. Those who are there for me and others with understanding, encouragement and sometimes righteous indignation.

I’d never wish another parent into the child loss community, but I am so very thankful that I’m not alone.

And on the days when I am weak – when the well is dry, others are stronger and extend the hand of courage to the weak and the wounded.

I need the Holy Spirit to fill me before I can be poured out once again for another.

We need each other.

How we need each other!

 
7 Comments

Posted by on May 2, 2017 in Grief

 

Tags: , ,

Still Gone

19 Apr


“It doesn’t matter how much I heal or how much emotional processing I go through or how much I pray or go to therapy, whatever, he’s still gone.” Said the young man whose older brother died eight years ago. 

I can relate to those words on so many levels. They’re pretty straightforward, but I’ve found myself meditating on them. In some corner of my mind I recognize there is a nuance that is not so straightforward but is profoundly important. 

And here it is hiding within these three words, “. . . he’s still gone.”

“He’s still gone.” 

I have spent the last three years processing my emotions in the aftermath of the collision that killed two of my daughters. Those losses piggybacked onto the loss of my son almost 25 years ago. And then they were interwoven with the knowledge that my 21 year old daughter, my only surviving child, was born with a rare genetic degenerative neuromuscular disease. Believe me when I say that I’ve processed emotions. 

Relentlessly. 

I’ve prayed. Prayers of anger and despair. Questing prayers. Begging entreaties. Oh yes, I’ve prayed.

I’ve even tried trauma therapy and grief counseling.

I’ve tried finding meaning in some global purpose. Painted on a positive outlook. Whatever.

And they’re still gone.

Do we somehow, unconsciously assume that emotional processing, therapy, and prayer will change that unacceptable truth? Do we think it will fill the gaping holes left in our hearts when our children die? Do we think that grieving will make the loss of our loved ones okay in time? 

And maybe that’s why “they’re still gone” echoes so hollowly through my heart and mind. Maybe I am living with the unrealistic expectation that at some point “they’re still gone” won’t hurt anymore. Is that the goal of grieving?

What expectation should I have? What will healing look like? Feel like? Is it even possible? And maybe that’s why his words, “he’s still gone” communicate a straightforward fact but if you really let them sink into your soul they communicate so much more. Resignation, sorrow, despair, and feelings far to deep to articulate. 

He’s still gone.

She’s still gone.

They’re still gone.

And maybe that’s why I’m stuck. Why I can’t move forward or get better – whatever it is that society expects of me.

No matter what I do, my personal reality is that they’re still gone. Until the end of my days they will be missing from me. Maybe there are some wounds that sink so deep into an individual that they can never be healed this side of heaven. And unless I make peace with the immeasurable worth of an eternal future (not just acknowledge it-not just understand it-not just hope for it) and even if I do make peace with eternity, the wounds I have sustained will never fully heal. They will always hurt because they’re still gone. 

Never will I be whole again. 

Never will it stop hurting. 

Never will I be okay with their absence. 

Still gone.

Still gone.

Still gone.

It echoes and echoes and echoes through me. Those words hold an unquantifiable depth of meaning and they leave my heart torn and bleeding.

Still gone.

 
11 Comments

Posted by on April 19, 2017 in Grief

 

Tags: , ,

Is There Life Out There?

04 Apr

“I don’t need any more accidents in my life.” (From the video above).

That just resonates within.

I really don’t need any more accidents—any more tragedies in this life.

And the partial lyrics below resonate as well in the aftermath of death and this pilgrimage we are taking through degenerative disease.

IS THERE LIFE OUT THERE - Reba McEntire

". . . 
But now she's wonderin' 
What she's living for 
. . . 
She's dyin' to try something foolish 
Do something crazy 
Or just get away 
. . . 
There's a place in the sun that she's never been 
Where life is fair and time is a friend 
Would she do it the same as she did back then 
She looks out the window and wonders again 

Chorus 

Is there life out there 
So much she hasn't done 
Is there life beyond Her family and her home 
She's done what she should 
Should she do what she dares 
She doesn't want to leave 
She just wonders
if there's life out there

I’m still wondering what my purpose is.

And doing something foolish or crazy or getting away from all that’s gone before—all that’s yet to come? I can’t even imagine what that would feel like.

I would do the same as I did before, and I don’t want to leave.

I just wonder if there really is a place in the sun—if there is something more in THIS world—something that doesn’t hurt out there. . .

For me.

And I wonder if other bereaved parents, other special needs parents, want to know that too.

 
4 Comments

Posted by on April 4, 2017 in Links, Music

 

Tags: , ,

What Bereaved Parents and Those Who Care for Them Need to Know

20 Mar

“It gets worse before it gets better.”

Those were the words the pastor offered to a newly bereaved couple whose daughter had died unexpectedly.

And you should know that he is right.

Bereaved parents are stunned when four months, six month, nine months down the road they find their grief remains overwhelmingly raw.

The shock has worn off.

Their hearts have been flayed open and the wound is still bleeding.

It doesn’t help that those outside the loss community expect healing to be happening when the magnitude of the loss is still seeping into the soul.

The depth of loss has not been fully realized when the funeral is over. No, in the weeks and months and years ahead bereaved parents are confronted with the realization that they didn’t just lose their child but that they lost the hope, dreams and expectations they held for that child as well. They lost their child’s future, but they also lost their own future expectations (marriages and grand babies, to name a few) and they grieve for both what their child will never experience and what they themselves will miss out on.

Frequently, bereaved parents squelch their grief as they try to remain strong for their surviving children. They can’t fall apart because they are so desperately needed by those too young to understand or to express their grief in healthy ways. That’s one reason why the average length of time it takes for parents to work through the grief process averages five years or more – the longest bereavement period of any loss known to man.

My daughter’s grief counselor told her that many teens don’t grieve over lost siblings for four or five years. They experience delayed grief which I think results from trying to be strong for their parents.

The entire home is in upheaval. The sense of security that was taken for granted has been exposed for the fallacy that it is. Gone is the naïveté that we can protect those we love from harm. It’s a frightening experience.

It’s truly terrifying.

And parents and siblings are often left dealing with problems that arise in the wake of the death. Financial pressure, legal issues, spiritual, emotional and health problems assault the family. Marriages and family relationships quake in the aftermath.

While the outside world expects healing to begin, bereaved families are often sorting through compounding problems. They are reeling from the fallout and haven’t really begun the healing process.

Grieving parents and the outside world need to know and understand that grieving the loss of a son or daughter – regardless of their age – is the most devastating and destructive loss experience. Both the bereaved and those who care for them need to anticipate and make accommodations for a long and drawn out grieving process, because it definitely gets exponentially worse before it gets better.

For those who care about the bereaved, grieve with those who grieve. Let go of the expected length of bereavement. Don’t reduce grief to a simple bid for sympathy or pity. And be ever aware that for the grief-stricken feeling bad feels bad, but feeling better feels bad too. It’s a psychological hurdle grieving families frequently face. There is a battle raging within the hearts and minds of loss parents. What they know to be true doesn’t “feel” true and they struggle to reconcile the conflicting messages received from the heart and mind. The solution is not as simple as mind over matter.

People often ask me what to say or do for someone who is grieving. So many times I’ve heard others advise just be present and listen. Both those things are helpful but not necessarily healing. In my experience validating feelings is the single most healing thing you can provide the bereaved.

Grief, for a bereaved parent can be likened to a pressure sore, more commonly known as a bedsore. Pressure sores develop when an individual stays in one position for too long. Unlike other wounds, a pressure sore grows deeper instead of spreading wider. They can be deceptively dangerous because they rapidly eat through layers of flesh below the affected skin to the tendons and the bones beneath if not treated promptly. Treatment involves the painful scraping away of the dead tissue to reach the healthy tissue below. Ointments is applied, the wound is packed and covered and daily cleaning is required to prevent the wound from getting deeper.

Likewise, grief gets worse and deeper when exposed to the pressure of society to project a positive outlook or to work through their grief in the timeframe others deem appropriate. Shaming and silencing the bereaved for failing to heal, wallowing in grief, or throwing a pity party deepens the wound by invalidating the lost loved one’s worth. Venting the negative feelings helps to clear away the infection but refusing to validate those feelings is tantamount to leaving the wound exposed to the dirt and debris floating in the air. The wound gets worse and healing takes longer as the grief-stricken seek the understanding of others.

Validation is the antibiotic ointment applied to promote healing. The presence of “safe friends” (those who don’t criticize or try to fix the broken) is the packing and covering which provides a barrier between the open wound and the influences of the outside world. Frequent validation and affirmation keep the emotional wound clean providing an environment that encourages healing. The bad must be flushed out before the good can replace it.

Unfinished grief occurs when we slap a bandaid on without cleaning and disinfecting the wound. The wound may no longer be visible to the outside world but is quietly festering beneath the bandaid that it covers.

For the bereaved, be gentle and patient with yourself. You’ve been deeply wounded and deep wounds heal slowly. As the old song says, “The road is long with many a winding curve.” Grief isn’t supposed to feel good.

It gets worse before it gets better; but it can and does get better as the grieving struggle their way through the intimately painful thoughts and emotions that arise after the death of a loved one. That’s not to say it will never hurt again at some point down the road. Instead it means the bereaved will no longer be consumed by and actively working through their loss.

 
124 Comments

Posted by on March 20, 2017 in Grief

 

Tags: ,

Love, Love, Love!

13 Feb

img_2351

Since my girls were small we’ve always made a point of giving gifts for Valentine’s Day. I wasn’t raised that way. It’s something I coerced David into, although it wasn’t difficult. I knew that when girls don’t feel loved by their fathers they tend to seek out love from other sources. More often than not their unmet need for love would be taken advantage of by a boyfriend and they would likely exchange love for sex. I didn’t want that for my daughters and having two daughters with ARSACS, a progressive neuromuscular disease, I feared my girls might seek love from the wrong people.

Gifting at Valentine’s Day was just one small way for David to demonstrate his fatherly love for his daughters. So at Valentine’s Day, a small gift and candy normally appeared for Bethany, Gracen, and Katie. Over the years David added in a card with his gifts. Inside he would write a special message for each one of his girls. He’d tell them why he was proud of them individually, what he enjoyed about them or enjoyed doing with them and he’d usually offer some encouragement before signing his name and expressing his love in writing.

beecherheart

We have several of those cards lying around and for me, they are a treasure in the aftermath of the car accident that took Bethany and Katie from us. David and I made more than our share of mistakes parenting our daughters, but those cards, a coffee mug, a small stuffed bear, candles, etc., all testify to the truth that each one was uniquely loved.

The night of that tragic accident David and I were driven from the hospital we were treated at to the hospital Gracen was taken to by helicopter. I remember sitting in the back seat of my in-law’s car in the dark, holding tightly to David’s hand and whispering to him, “They knew they were loved.” Knowing they were loved was second in importance only to knowing where my daughters would spend eternity.

They were loved.

They had no doubt that they were loved.

They are still loved, and always will be until we are reunited in Heaven above, and there they will be loved eternally.

In the meantime, it’s time to start planning a Valentine’s Day surprise and personal card for Gracen as Valentine’s Day will be upon us before we know it.

Neither death nor disability will ever dim the love we have for each of our daughters. We rest confidently in the knowledge that what Satan means for evil God allows for good. And David and I know we are loved too, by each other, by our children, and by our Heavenly Father.

Long ago the LORD said to Israel: “I have loved you, my people, with an everlasting love. With unfailing love I have drawn you to myself. ~ Jeremiah 31:3

 
4 Comments

Posted by on February 13, 2017 in Faith, Grief

 

Tags: , , , ,

Can Three Years Have Passed?

06 Feb

Three years ago January 4, I buried two of my three beautiful daughters. The day before the funeral my sister-in-law, Sandy, took me shopping for widows weeds. What an appropriate name for the clothes you never wanted to grace your closet! And David and I prepared to leave our sole surviving child in a hospital three plus hours from home to celebrate the lives of our oldest and youngest daughters. Not our oldest child, no, he’d been buried twenty some years by that time.

And one remained.

Just one.

We arrived at the motel late that night after having driven in the dark for many hours. We were tired . . . worried . . . and broken. The motel sat less than a mile from our home, but I couldn’t stomach spending the night there without any of my children. And family was staying at our home already and I just wanted to be alone with my husband. We hadn’t spent many nights together since the accident.

That night, as we lay together in that unfamiliar room we talked about our girls, our fears for tomorrow, the difficulty of leaving Gracen behind, and the concern over her missing the memorial service.

I was nervous about the service the next day. The news coverage left me fearful that cameras and strangers might greet me in my worst moments. What lay before me was a small-talk nightmare. And so David and I agreed to spilt a pill prescribed for each of us at the ER. I can’t even tell you what it was. A sedative—an anti-anxiety medication? I don’t know. We just knew it was supposed to help. I didn’t want to miss the memorial service because I was too tired to pay attention, but I didn’t want to be filled with anxiety either.

So on the day we buried our daughters, we split a pill and swallowed it down before we left the motel. And then we stepped outside, took the elevator down to the lobby, and found family gathered there. We had no idea they were staying in the same place we were. After hugs and stilted conversation David and I left for the church . . . left to do what no parent ever dreams of doing.

img_2437And later that day we would turn our backs and leave the bodies of our children in that cold cemetery. We would drive away – abandoning them there in order to do the next thing. Had it not been for Gracen I think I would have curled up on that cold mounded dirt and cried out my misery until spent. There I’d sleep until I joined my children on the other side of the veil. Instead, I did the next thing and the next thing and the next thing and that’s all I’ve been doing ever since.

Maybe that’s all life was meant to be. One long line of doing the next thing . . .

until you are no more.

Yes, three years have passed and all I do is the next thing.

Believe me, that’s a victory.

 
18 Comments

Posted by on February 6, 2017 in Grief

 

Tags:

Created for . . .

23 Jan

strandeddanipettreyIf you’ve read my blog posts in the past you probably know that I love to read. When I was a child it seemed as if my parents took us to the library once a week. I have a few distinct memories of the Swanson Library in Omaha, Nebraska. From my child-sized view, it was a huge library filled with a treasure trove of books and resources. It stood as a playground in my mind. I remember the hallways and the room where movies were shown, the book drop bin outside in front of the library, the long counter where books were stamped for checkout and I have a very clear image of standing in front of a bookcase filled to the brim with fictional escapes to dreamlike places and lives. The library is a very vivid image of my childhood.

I’m an avid reader. One the genres I enjoy reading is Christian fiction. The authors have expanded my understanding of scripture and taught me lessons that have stayed tucked in the forefront of my mind because of the story wound around the theological message.

One such book touched my heart as the parent of a stillborn child. I’d long ago laid down the question of why realizing there would never be an answer good enough to satisfy my grieving heart this side of Heaven. But there is a second why question that had never been answered satisfactorily that has lingered in the recesses of my mind for almost 25 years. That question is why create Cole at all just to have him die before he lived outside of my womb?

In the last year, I happened upon the best answer I’ve ever encountered in a book called “Stranded” by Dani Pettrey. In the course of the storyline, one character asks another why God would create his son just to let him die. The character responds that his son wasn’t born to die, he was born for eternity. That one sentence just grabbed me and it hasn’t let go.

As I have pondered this explanation, the conclusion drawn has expanded in scope in my mind. You see, every creature created by God Almighty, not just the miscarried, stillborn, aborted, or baby who dies shortly after birth, but every single human being ever created was not created for this world alone. Every single one was created for eternity. We were all created for a forever relationship with God.

To use the old dot and line analogy, our lives here on earth can be represented by the dot, and eternity is represented by the line. It looks like this:

.______________________________________________________________

That word picture doesn’t always help me to grasp the concept of eternity. But, if I’m standing on a hilltop or the top of a mountain looking down at the valley below and beyond, it feels more real. In that case, the place I stand is the dot and the line is as far as the eye can see stretching out before me . . . and beyond. That idea blows my mind.

eternalperspectiveIn comparison, our earthly lives are barely a blip on the radar of our eternal future. This is why the scriptures can so boldly proclaim that our suffering in this world is nothing more than a light and momentary affliction.

“But do not forget this one thing, dear friends: With the Lord, a day is like a thousand years, and a thousand years are like a day.” ~ 2 Peter 3:8

When we think about the suffering of Christ, the suffering of the Father while Christ was abused, spit on, whipped, and had nails pounded into his wrists and feet, we often think the time of Christ’s suffering was short. His absence from the disciples and His other followers a mere three days (prior to His ascension), yet from a heavenly perspective, Christ’s one full day of suffering in equivalent to 1000 years. If every year is equated to a thousand years then God the Father awaited the resurrection of His beloved son for 3,000 years. And Christ’s lifetime (living life as a human as opposed to deity alone) lasted 365 individual days times 33 years of life or 12,045 days. When you multiply that by 1000 years Christ lived the equivalent of 12,045,000 years separated from His Father, and has lived far more separated from all of His creation. I don’t know about you, but that’s a sobering thought for me.

We were created for eternity. It’s our free-will choice where we will spend those eternal days. A failure to make a decision is, in fact, a decision. Allow me to plead with you to make a wise choice. When you consider that a mere 33 years is equivalent to 12,045 days, that’s a lot of time spent in your eternal home. But 12,045 days will feel like 12,045,000 years when spent in hell as opposed to Heaven.

Yes, I believe in Hell. The Bible writes very vividly about it. It’s not the fun party place we like to believe it to be. It is a place of endless torment, isolation, sorrow and fear. Yet, we all have a choice. No one need go there.

No one.

Everyone spends eternity somewhere.

Where will you spend it?

 

*Photo credit goes to Karen Blankenship. Pictured is Matthew Sanders.

 
4 Comments

Posted by on January 23, 2017 in Faith, Grief

 

Tags: , , ,

If it walks like a duck . . . 

12 Jan

 

duckwaddle2June or July or somewhere around there—the first person went where angels fear to tread and recommended that I find a new perspective regarding my circumstances. It was a subtle message, but I grasped it right off. At the time I remember thinking, “Am I behaving in such a way that others feel the need to give me the positive thinking message?” The mere suggestion made me doubt myself.

Frankly, I thought I was doing pretty well considering I’d just buried two children and had been learning to care for my disabled daughter in new and challenging ways.

David, Gracen and I laughed a lot the first year. We developed a sarcastic and dark sense of humor and released our grief through laughter more than tears. But apparently, I did not appear joyful, which I’m guessing, outwardly looks like happiness. I wasn’t wearing the Christian mask of perfection. It didn’t take long for me to learn that it’s not okay to be real in the expression of my emotions and struggles. It’s not okay for others to be uncomfortable because of my sorrow. It’s not okay to grieve after a certain point in time.

The funny thing is, everyone has a different idea of when that point in time officially starts. At least one person determined that six or seven months was adequate. Most people generously grant you a year. After that, well, you’re not really grieving—you’re just throwing the biggest pity party known to man.

These days, if I can get out of the house, I am no longer walking in the grief-cloud. I can follow a conversation (better)—maybe even remember details important to others. I can laugh and smile and my life’s circumstances are no longer in the forefront of my mind.

No, they’ve moved to the back of my mind.

Always present.

Always lingering and lurking and awaiting a trigger so that they can move back to the forefront once again.

I can’t explain how it happened but at some point being a disciple of Christ was not a role I played here or there; it became ingrained in my very being. The same thing happened when I became a mother. Doing motherly things wasn’t always in the forefront of my mind, but being a mother became a part of me I was constantly cognizant of.

Furthermore, the role of a special needs mother became a larger and larger part of my identity as ARSACS progressed in Gracen and Katie’s bodies. Every activity had to be filtered through how it would, could, or could not be accomplished. From homework to PE, sleepovers and simple accessibility considerations.

Everything!

The point came where Gracen needed all her everyday clothing in the top two rows of her dresser because she could no longer bend over to remove things from the lower drawers without losing her balance. So when I say everything, I’m not exaggerating a whole lot. I guess watching tv itself hasn’t changed, but getting seated on the sofa to watch tv has.

Christianity, motherhood, special needs parenting all became a part of my identity. The same thing has taken place since the deaths of three of my four children. Bereaved parent has joined the ranks of my personal identity.

Maybe you don’t see me that way but if someone asked who I was, how would you describe me to another? By outside identifiers; my height, weight and hair color—then you add in the other things commonly known about me or any other individual.

ladysnakecharmerIn Christian circles, you wouldn’t identify me by my faith unless there was something very unique about it. “She’s the woman that worships with snakes.” I guarantee you, if anyone in my church family included snakes as part of their normal worship activities everyone would know who that individual was, if not by name or sight, then by reputation.

astonmartincarWe all have a reputation. Some good, some bad, most a mix of both. The lady who drives the Aston Martin would certainly be known in most communities. And we all have things that make up our identity. Very few disabled people don’t recognize their disability as part of their identity, but it’s a defining characteristic of that person. Just like being an athlete or scholar, doctor, or maid becomes not only how others identify them but how they identify themselves.

Bereaved parent is a role that’s identified me for almost a quarter of a century now. But three years ago it became a much bigger part of who I am. Being a special needs mom has been part of my identity for twenty years, but in the last five and particularly the last three it’s become a much bigger part of my identity.

If you were describing me to a group of people in my church, I doubt others would begin with the fact that I’m married to David, that I’m a stay at home mom. Most people would skip right over the physical descriptors and start right in with, “She’s the woman with the daughter in a wheelchair”, or “She’s the woman whose two daughters died in that car accident. You know—the one that happened the day after Christmas.” And any church member whose been there more than three years would likely know exactly who I am. People want me to move past my grief yet it’s the very thing they use to describe me to others.

We are what we do or what happens to us as much as we are our appearance. If you describe someone among a group of Christians as being unsaved, it’s likely that you might be able to identify that person by their outward appearance, the things they say and how they behave and treat others. If not, the Christians among you are probably not the best representatives of Christ.

bbirdoneoftheseThe point I’m trying to make is that you should expect behavior that correlates with the descriptors you use to define someone. The unsaved among the saved may be dressed less modestly. Their speech may be liberally sprinkled with expletives. You might see them drinking to intoxication, or find them bragging about things they’ve said or done that are not common among believers. oneofthesebbirdUnless you are dealing with an abnormally moral individual there should be recognizable differences between the lost and the saved. You expect them to fit the Sesame Street standard—you know—one of these things is not like the other. That’s the Sesame Street Standard.

So please, if you are going to identify me as a special needs mother or a bereaved parent, please expect me to look and act like one. It shouldn’t always be outwardly evident in my appearance and in many ways (after the first few years) it may not be as behaviorally evident, but I will always be a special needs mom. I will always be a bereaved parent. In many ways, I’m unique because of those aspects of my identity. But when I hear the move on message; I hear that somehow I’m not supposed to look or act like the individual you’ve identified me to be. There will always be some evidence of my identity. 

Always.

I may cry at unexpected moments, flee a meeting, avoid a wedding, miss church but I may also be the individual in the group who always notices the elderly adult that needs help with a door or carrying a drink. I may be more aware of the child left behind or flat out ostracized. I may be the woman known for validating the feelings of others. The one who can hear the good, bad and ugly and still see the heart beneath. I may visit people in the hospital that I don’t know. I may encourage the broken, answer faith questions for the doubter or burst out in anger at the mistreatment of another.

Expect me to be who I am, please! And if I surprise you, woohoo, that says a lot about my progress in healing. But if I don’t; judgment, criticism, accusations of self-pity, gossip, disguised as prayer requests or not, are not welcome. I’m not justifying sinful actions, just the normal emotions and temptations we all face.

babyduckwaddle2I am who I am.

I am who God created me to be.

I am who He knew I’d be.

He’s no more disappointed in me than He is in you.

Hear me as I whisper words of another’s hard-earned wisdom . . .

Let it be!

Waddle, waddle…

 
9 Comments

Posted by on January 12, 2017 in Faith, Grief, Muscular Dystrophy

 

Tags: , , , ,

A Look Back

04 Jan

There are days I choose  to look back. Not because I want to wallow in self-pity but because those days are just significant in our lives. Below you will find my blog posts from the first anniversary of Bethany and Katie’s burial and then the second anniversary. Today, I really don’t have anything to add. Some of the memories are fading. That’s not an entirely good thing. . .

This slideshow requires JavaScript.

    

Flashback – Anniversary of the Funeral

A year ago today Bethany and Katie were laid to rest. January 4, 2014, runs through my mind in bits and pieces like a slideshow of still photos – moments captured in my mind – interspersed with video-like footage – blurred images alongside others in sharp focus.
Memories of personal encounters during the visitation – my college roommate’s husband standing before me unashamed as tears fell from his eyes – impossibly young friends, teachers and school nurses extending sympathy – friends who had driven several hours, many of whom hadn’t seen us in almost ten years – a man who only identified himself as “a friend”. Bethany’s broken-hearted boyfriend and his equally broken-hearted mother standing alongside her sister and the soft pink tulips (Bethany’s favorite flower) we cherished.

Pastor Wes and Lisa meeting with us just prior to the start of the service. The comfort and blessing provided by the presence and participation of Bill Boren, our Pastor from Kansas City and long-time friend, who had performed our son’s funeral twenty plus years before. The music and message.

The sight of those two flower draped caskets standing in the cold air at staggered heights one in front of the other, the cemetery chapel providing a fitting backdrop at the graveside service. How I wish I’d taken a picture of that starkly beautiful, sobering and painful view.
The luncheon that followed – and the hospitality the church ladies extended in inviting and making welcome the numerous international students Bethany had befriended at UCA.

The discovery of the stroke my oldest brother suffered leaving him hospitalized at Northwest Regional.

The dark drive back to Little Rock with my crazy brother who was insanely willing to spend three hours on the road with us all because he wanted thirty minutes with Gracen before taking upon himself the responsibility of driving Bethany’s car another three hours back to Bentonville, in what had become inclement weather, before driving on to Tulsa planning to catch a flight home that same night.

Today was a day of bittersweet flashbacks of well remembered, sharply-edged pain, gently buffed smooth and soft by hugs of comfort and sorrow shared between friends and family. Yes, a year ago today Bethany and Katie were laid to rest and tonight Gracen will drift off to sleep in her over-sized Pineville Fire and Rescue t-shirt.

 

January 4, 2016


The alarm rings and David and I rise. This is not our home, not our room, not our en suite bathroom. How could we stay there without a single one of our girls?

We hit the showers and iron clothes and dress in fine, dark clothes befitting the occasion before slicing a pill in half and taking turns swallowing the pieces down. The room is bright but our hearts are not.

We pack up our things and exit heading off to do the thing we least want to do but cannot bear not to. It is January 4, 2014, and it is chilly out. Another day of moving cement encased feet, one in front of another. It’s day ten.

We arrive at the church and head to the sanctuary where we are greeted and hugged by longtime family friends, Jack and Sherry Erisman and their grown and married daughter, Maryann. We turn and enter the darkened and silent sanctuary; empty but for two identical flower-draped caskets, and pictures of our smiling daughters standing alongside. We walk slowly forward where I lay a hand first on one, and then the other casket, thankful we chose the bright, vibrant sprays of flowers, so reflective of Bethany and Katie in life.

I don’t want to be here! No, that’s not right. I don’t want to have reason to be here. I wish the nightmare would end. Wish I’d awake to find we’re pulling into our driveway ten days prior, December 26, 2013, at 3:15 in the afternoon. That’s the time we would have arrived home had we not encountered Troy Robins. Wish I could watch my three daughters, my impatient dog, O’rane and David climb from the van, stretch and tumble into the house dragging blankets, pillows, electronics and suitcases along with them. If only I could rewrite that day! If only . . .

Instead, Pastor Wes George and his wife Lisa join us and we prepare for the visitation that will be held before the funeral begins. David and I stand facing the rear of the sanctuary, to the right of the caskets which will not be open for viewing. Ten days is too long. And then the doors open and people begin lining up to share our sorrow and express their condolences.

That half-pill erased most of my anxiety over strangers and reporters. Simple gratitude remained for those who patiently waited to hug us and tell us of their prayers on our behalf – for those who stooped to place a shoulder beneath the cross we struggled to carry that day and the nine before. My focus was narrow. The person before me, David to my left and Bethany then Katie to my right.

It was time. Pastor and Lisa drew us back into the choir room behind the platform at the front of the sanctuary, gave us last minute instructions, inquired as to how we were holding up and gave us a moment to take a deep breath before the girls final service began. And the music started – “He’s Been Faithful to Me”.

We reentered the sanctuary and took our seats huddling together, holding hands and focusing on the music and the brief synopsis of our girls’ far too brief lives. Clinging to scriptures of faith and hope – scriptures of our loving God and an eternal future for our girls and for ourselves.

All too soon we were loaded into a car and driven to the cemetery where we found the girls’ caskets set at staggered heights with Hunt Chapel serving as a fitting backdrop for the faith we profess. A few final words were spoken, and then . . . we turned our backs and walked away, my heals wobbling and sinking into the grass as we crossed the expanse of lawn back to the car. We left our girls for the last time – the last time – in that beautiful and cold cemetery where nothing and no one would ever hurt them again. Oh, the agony of it!

My only regret is that I do not have a picture of the graveside service. The tent with friends standing and seated, the staggered flower topped caskets, the chapel and David and I standing before it all. It’s an important, albeit devastating moment of our lives. I’d like to have that moment under glass so I can slide my finger over it as I remember the beauty of the place, the beauty of the sorrow, and the beauty of broken hearts. Broken hearts are beautiful. They reflect raw love in the wake of incomprehensible loss.

I remember that day in graphic detail. The ride back to the church, the meal served upstairs for friends and family, the international students in attendance, the ladies who served lunch. I remember padding downstairs in stocking feet to load up plants and flowers to take to the hospital hoping to brighten Gracen’s room, hoping to share her sisters’ last day with her and so I could hold onto their beauty and fragrance until they were no more. I remember saying goodbye to family, changing clothes in a bathroom stall, a quick stop home and driving back to Little Rock. I remember the vast relief of seeing and touching Gracen again – still breathing – Thank God she was still breathing!

And as tears roll down my cheeks, I remember that day as if I am walking through it again on weighted feet with leaden heart as keening sounds claw their way up my throat to tightly clamped teeth and lips holding back the shrieks of pain and sorrow in deference to the now twenty year-old girl who lies on the sofa in the other room; oblivious to my journey down memory lane.

Yes, I remember that day as if it were yesterday. I think it will forever feel like yesterday.

 
17 Comments

Posted by on January 4, 2017 in Faith, Grief

 

Tags: , , , ,

← Older posts
 
%d bloggers like this: