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Two Years Later . . .

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Why a glimpse behind the curtain to the deeply personal and hidden grief of a bereaved parent? Not to inspire your pity; of that I can assure you.  Instead to inspire others to look beyond the surface of a grieving friend or family member. To consider how families are affected by loss, emotionally, psychologically and spiritually, as well as the unique family dynamics that result; which might help you comfort, support and encourage them. The bereaved desperately want to be understood, to have their feelings validated, to break free of the isolation, to mourn unrushed, to have another share their sorrow (not attempt to fix it). This post was written months ago and is not reflective of my current state of mind.

 

Two Years Later . . . 

This morning, the 2nd anniversary of Bethany & Katie’s deaths, I woke up in my in-laws guest room and told the Lord,

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I miss my babies.  I miss the life I used to live.  I miss the sweet ignorance of not knowing what disease plagued Gracen and Katie’s bodies, the unappreciated bliss of an unknown prognosis.  I miss my failure to understand that You, Lord, promised to walk through this life of trials with me, never once leaving me, but not to protect me from the free will of others and not to make life pain free.

 

I miss waking up with purpose.  Waking to enjoy the the birds singing and the sun shining.

I miss hugs and smiles and laughter — the sounds of life in my home.  I miss making cookies just to hear Katie’s whoop of joy.  Watching David and Bethany laugh over movie lines that cause me to roll my eyes.  Seeing Katie sit at Bethany’s feet joyful that her big sister was home from college.

I miss arguments and bad attitudes and snark and sass.  I miss seeing Katie curled up in David’s lap to watch a movie, David teasing Bethany and listening to him negotiate with Katie for hugs and kisses.

10246606_730773960317860_6144985397676167154_nI miss sibling rivalry and laughter and two ganging up on one.  I miss hearing how Gracen stood up for Katie at school, how Bethany watched out for Gracen and coming home to find all three watching music videos loud enough for the neighbors on either side to enjoy (?) too.

I miss praying for Bethany and Katie.  I miss inviting You, Lord, close instead of desperately clinging to You.  I miss what was and will never be again.  I miss the life I’d planned to have.  I miss ignorance and curse knowledge and I hate the last images of Bethany and Katie seared upon my mind, taunting me with their stillness, eyes once full of life and love vacant and unseeing.

I miss the me I used to be; the me I wish I could be again.  I miss the me who did not live with the ever present ache of loss.  The me who did not have to fortify herself for a simple trip to church, the me who did not have to plan in advance answers to everyday questions to guard my heart, my privacy and to avoid making others uncomfortable.  I miss genuine smiles.  I miss the ease with which I faced a day and the dark of night; of restful sleep, a focused mind, and simple motivation.  I miss anticipation and excitement.

IMG_3507 (2)I miss having all the bar stools at my counter filled. . .  I just miss so much — it all haunts me while I’m simultaneously thankful for Gracen and David.    Joy and sorrow side by side — both aware of all I have and all I’ve lost in every moment of every day.  One word defines my life — bittersweet.

And as I rolled over and curled in upon myself, I asked the Lord to help me get up and get going, to be a good house guest, to ignore the onslaught of sorrow, deep and numbing. To be able to be present instead of withdrawing from everyday conversation in desperate need for time alone — for the distraction fiction provides.

I finally rose at 10:30, hours later than I usually rise when we visit Kansas City.  And when I entered living room Sunny greeted me with a warm, “Good morning sleepyhead”, and Donna quietly went about frying an egg for me, then sat down at the table to visit with me while I ate.  No frustration, just uncomplicated acceptance and the kindness they have always shown me over the last twenty-eight years.  I found my heart full to the brim with both gratitude and sorrow — both of which my wonderful in-laws share with me.  I am not alone in my loss, in my sorrow, and in gratitude for what remains.

Empathy (shared sorrow) is so much more comforting than the fellowship of sorrow and pity. Pity pops in to express sympathy and promptly exits. Pity is love without commitment. It lures and deceives the grief-stricken with a promise of support only to silently slip away. Shared sorrow blesses the grieving by claiming a seat at the table of sorrow and dining on the bitter taste of disappointment and despair; drinking from the cup of agony before pulling out the dessert plates and loading them up with the sweet savor of united hearts and minds.  Shared sorrow is committed love.

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Helping the Bereaved Bear their Burdens

1.  People outside the immediate circle of loss, tend to view the death of a loved one from a broad, general perspective.  The bereaved grieve in fine detail. Acknowledging specific losses, unfinished plans, a lost legacy and the empty seat at the dinner table communicates to the bereaved that you care about the depths of their loss.

e9ee9b4bef3f86fba3571ecd3f0cbe512.  Speak the loved one’s name.  When a baby is stillborn or dies shortly after birth the family is left with a void they are unable to fill with memories of their child.  Using their child’s name, asking about the infant’s birth weight, length and hair color affirm the child’s worth. Avoidance equals isolation.

3.  Speak the loved one’s name-regardless of their age at the time of death.  As time goes on, the name of a loved one is spoken less and less frequently.  The bereaved want their loved ones remembered.  Mentioning their name, telling a family member you thought of their loved one and you miss them is a great blessing.  Speak about their loved one in a positive way, don’t just say how sorry you are for their loss.

4.  Many bereaved parents feel as if others treat them as if they are cursed following the death of a child. Avoiding bereaved parents because you are unsure what to say or do can frequently be perceived in unintended ways.  So, avoidance is not the answer. Call or visit and simply say, “I have no words.” “I don’t know how to help, but I want to be there for you. Tell me what you need to hear from me.”, and if you love the bereaved person keep trying to reach out, but don’t make them responsible for making you feel comfortable in their presence.

5.  Don’t expect the bereaved to step back into ministry roles and other normal activities. Some will return quickly, some will take six months or a year. Some will never return to that specific ministry or activity. Be sensitive. Churches are often in need of members to serve, but be careful not to push.

cdd180cb45e020a4fd5a2efa4c6415dd6.  Never compare the loss of a loved one to the death of a pet (it’s more common than you think). The loss of a child and a spouse are the most devastating losses the bereaved endure. Don’t tell the grief-stricken that you understand how they feel because you lost a uncle, grandparent or parent. The level of intimacy in the severed relationship determines the depth of grief experienced.

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 7.  When a parent loses a child, never say, “Well at least you have two more.” or “Be thankful for the ones you still have.” The death of one child doesn’t negate the parent’s love for the rest of their children. Grief and gratitude can and do co-exist. And the birth of subsequent children do not replace the child that died.

8.  Don’t be offended if the bereaved don’t personally call you to notify you of the death. It is not at all unusual to for the bereaved to be too emotionally overwrought to call even their closest friends and family members. It’s is however, very common to contact one family member and ask them to contact the rest of the family. It’s not a slight. Some are busy at hospitals, others are in shock, and some just can’t speak.

9.  Don’t ask for details especially in the case of suicide, murder, or accidents. Those who need to will share that information with someone they are close to. Others do not want to remember their loved one that way and may have been traumatized by things they’ve seen and experienced. Rehearsing it is retraumatizing and sometimes leaves the bereaved feeling as if you care more about the gory details than you do about them.

10. If you have pictures of the deceased, email copies or get prints made and bring them to the family. Every picture is a coveted treasure.

 
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Posted by on February 28, 2016 in Chronic Illness, Faith, Grief, Muscular Dystrophy

 

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An inside look at Muscular Dystrophy. . .

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I too see and appreciate the tender mercies yet have not made peace with what might lie ahead as we live with ARSACS, a different form of Muscular Dystrophy than Mitchell’s family endured.

I am not simply grieving what has been lost already, but what is yet to come. Maybe, this video will help others to understand why I am so resistant to moving forward. I’m still coming to terms with the fact that everyday following December 26, 2013, has been and will be the best of times for our family, in spite of what physical skill may be surrendered to ARSACS on any given day.

Please, take a minute and watch this short video by clicking on the link below highlighted in red.

WHEN THE LIGHTS GO OUT, AS THEY SURELY WILL

So, I try to live in the present. Sometimes life demands that I look further down the road, and sometimes I’m unable to prevent my mind from floating forward to the new eventualities, but I desperately try to control my thoughts, to avoid “kicking at the pricks” as Christ informed Paul he was doing on the road to Damascus.

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Please try to understand that my hope lies in eternal things and avoid trying to help me have hope for things of this world. I’m not trying to be negative, I’m just grieving what’s been lost while simultaneously grieving what’s yet to come.  It’s known as Anticipatory Grief.

I know there are not a lot of people who have walked in my shoes and have no idea what it’s like to live in a continuous grief cycle and therefore, don’t have any concept of how I think. I know that experience is the most effective way to develop empathy but before you try to remind me of my blessings please imagine living with my everyday reality.

1908247_836591986370464_1217962212_nI didn’t lose a son and two daughters and begin picking up the pieces to move into a hopeful future. I live with the knowledge that I will always be picking up broken pieces and there is no way to repair the pieces that have been falling since MD entered our lives.

Happiness may be fleeting and driven by circumstances, but joy and happiness are not equivalent. Joy is the light of the Holy Spirit’s indwelling. Unless we are consciously trying to hide it, joy seeps to the surface. It’s intangible – a silent, more subtle and substantial quality than happiness which flaunts it’s presence in spontaneous and short-lived smiles, laughter and excitement. Joy lingers, in fact it resides, within even the most wounded heart because it is the fruit of the Spirit.

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Do not jump to the conclusion that families who cope with special needs, life-threatening or progressive disease live without joy and are unaware of their blessings. You might be surprised to hear them voice their deep gratitude over the smallest of accomplishments and simplest of kindnesses.

Living with great needs has a way of opening your eyes to the smallest of blessings, but it doesn’t anesthetize the painful realities of life. It’s like a downpour abating just long enough to load your daughter into the car and her wheelchair into the trunk. You are grateful, thrilled even, that you aren’t soaking wet even knowing you will still have to place the daughter of your heart back into that wheelchair when you arrive at your destination. You also know the rain might not abate when you arrive and you may still end up soaking wet. In spite of that you are still thankful that you stayed dry for the time being.

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I want others to understand that none of this is easy, there are no simple answers, and I will not always be able to tie up my messy life and emotions with a Biblical bow that makes everyone, myself included, feel better.

If you haven’t already; watch the video, read Mitchell’s father’s Facebook posts. You will find a godly man who, two plus years later continues to deal with sorrow. He’s also aware there will be more darkness to navigate down the road. He ties things up with a Biblical bow better than I do; so you will appreciate his lessons and feel comfortable hearing them too. He has much of worth to share.

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Graceful Gratitude

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Thanksgiving started early for me this year. 2:15 a.m. to be exact.  That’s the time my cell phone rang alerting me that Gracen was in need of some help.  Following her call, I hurried to the bedroom next door to find Gracen flat on her back, thirsty, hot and trapped under her covers with her knees bent and sore.

I peeled her covers back and removed the new knee-high AFOs (Ankle/Foot Orthotics) she now wears to bed nightly. Then I helped her to straighten her legs out by pulling her ankles toward the end of the bed and simultaneously pushing down on her knees one at a time before getting her some water.

Through all that, she accepted help without one complaint, in spite of the fact that I slept through two text messages before she called my cell.

Then I kissed her goodnight for the second time and crawled back in bed hugging my pillow to my chest; and I thanked God for Gracen’s attitude and for the grace she demonstrates in the face of debilitating disease.

As I lay still waiting for sleep to once again overtake me, I absorbed the most recent physical changes in Gracen’s body.  It hurts to watch her body continuously fail her.  And I thought about gratitude. One thing I’ve found in the face of the deaths of my oldest and youngest daughters, Gracen’s injuries and progressive disease is that others, in sincere compassion, try to make me feel better by reminding me of the many blessings in my life.  It’s almost as if people believe that counting your blessings negates your sorrows; which is categorically untrue.

Gracen’s diminishing physical abilities actually set the stage for thankfulness for it is in light her losses that I find myself grateful for much simpler things.  In the wee hours of Thanksgiving morning I found myself thankful for my graceful daughter precisely because she has every reason in the world to be angry and resentful.

The point I’m trying to make is that gratitude is experienced in contrast to those things for which we are not thankful.  Andrew Downs said it far better in his book  Alex Hollick:  Origins:

“To walk in the shadows is not a curse and to walk in the sun is not a blessing.  They are simply relative points of harmony, by which we can appreciate what we have, what we once had and what we hope to have.  The sun means nothing without the shadows, nor would shadows without the sun.”

So, by all means, count your blessings; but don’t beat yourself up for the normal emotions that arise from trials and loss.  God doesn’t tells us to suppress our emotions.  He tells us to bring our burdens to Him and when we do, gratitude will likely follow as we witness His care and provision.

 
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Posted by on December 1, 2015 in Chronic Illness, Faith, Grief

 

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Thanksgiving 2015

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This Thanksgiving we will return to Kansas City as we have for the last ten years. Every time we choose to go “home”, we pass the accident site twice. In fact, we rarely drive north unless we are heading back to see family and friends. The crosses usher in a heighten level of anxiety for the painful moments that are simply unavoidable. And the return trip heralds in memories of where it all went so wrong. To say I need to emotionally prepare myself for these trips is an understatement of gigantic proportions. But staying home – being alone in our unnaturally quiet house – is exponentially worse.

Gratitude and grief co-exist within my heart. Therefore, this year I plan to allow myself permission to do something I’ve never permitted myself to do in the past. If I feel overwhelmed, if the sight of healthy intact families, and bright futures pinch just a bit too much, I will slip off and ensconce myself in the room we make use of when we are in town.

I will not make myself be strong when I feel weak as I have done in seasons past. I will not force myself to wear a mask in order to make others comfortable in my presence. I’ve long been aware that I’m not responsible for how comfortable others feel with my grief, at the same time I’ve always assumed responsibility for shielding others from my emotions, for their sake and mine.  Frankly, an open display of my vulnerabilities is abhorrent to me. In the past I’ve felt as if leaving the room was just as bad as crying in public. Doing either draws attention and leads people to talk. Now, I’m just tired. I also realize that it’s not unreasonable or shameful to remove myself from a situation in which I’m uncomfortable. To remain, to pretend good cheer, that’s a burden too great for me to bear and this year – I just don’t have the energy.

Small talk is chief among my personal anxieties. I can talk about Gracen. I can talk about David; but I cannot talk about myself. I have absolutely nothing to share. So if conversation stalls, I will remind myself that I am not individually responsible for keeping the conversational ball in play. If asked questions that are awkward, I will, for the first time ever, say, “This is not a good time to discuss that.” or “I don’t want to talk about that.”

Deflection, a highly valuable social skill, is not one I’ve ever become adept at using. Over the years I’ve been put on the spot and found myself exposing vulnerabilities to family, friends or mere acquaintances to my personal detriment. In the coming weeks I will practice simply not answering a direct question by responding with a question of my own.

Grief is teaching me a world of useful and unexpected lessons and fiction has provided a multitude of examples from which I intend to draw. (I knew I’d eventually uncover a completely reasonable excuse to justify the inordinate amount of reading I indulge in.)

Most importantly, I will remind myself of this truth:  Honesty does not require transparency; nor does it require vulnerability. It is my right to choose both when and what I feel comfortable sharing and with whom I wish to be transparent and vulnerable.

I don’t want attention or pity: I want privacy and understanding. I don’t want others evaluating how I’m doing based upon their personal perceptions. If asked, I’ll share what I’m comfortable sharing and hope if others later inquire, that no more than what I’ve shared will be disseminated. Anything more is little more than fodder for gossip.

I will never forget how gutted I felt when I bumped into a friend following the death of my son and she said, ‘I heard you weren’t doing very well.’ What was worse was realizing that the person who reported on my well-being had never asked me how I was doing; they simply watched me and drew their own conclusions.  Gossip hurts.  While long forgiven, and completely beyond my control, I remain hypersensitive to how I am portrayed to others. It’s my reputation and it’s my heart that suffers for idle words spoken.

While the things above may seem simple to many, they are challenging for me. So this year, I will keep the commitments I’ve made to myself and will do my best to let go of the things I can’t control. There is grace and forgiveness for those things.

Of the many things for which I’m thankful – the blessings among the thorns, I’m most grateful that I still have David and Gracen. However, I dread that moment that often occurs at Thanksgiving gatherings when asked to share that for which we are thankful. To express my thanks for my husband and daughter draws attention to those who are missing. It’s awkward – for me and for everyone else. While grief may overshadow my gratitude, that doesn’t mean I don’t recognize and appreciate my blessings. So this year, I will give thanks, but I might not have a happy Thanksgiving. Contrary to what the Veggie Tales teach, a grateful heart is not always a happy heart; and that’s OK, gratitude is sufficient.

 
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Posted by on November 16, 2015 in Grief

 

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