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Category Archives: Muscular Dystrophy

Welcome to Paranoia!

(Originally published on Facebook 11/17/14)

letter-to-mePlease take a moment and read this blog post from themighty.com, entitled, “A Letter to the Me Who Was Terrified of Our Diagnosis”, before reading any further. (Link highlighted in red below)

A Letter to the Me Who Was Terrified of Our Diagnosis

Oh yeah! I wish I had read this in the early years, when I knew something was wrong but most people (medical professionals included) thought I was simply a paranoid, over-protective mother.

I never could have written this to myself. The many comments that minimized Gracen and Katie’s symptoms from real concerns to simple clumsiness left me second guessing myself. Having lost one child, I was hyper-sensitive to every fear, but also hyper-sensitive to over-reaction. I knew I needed to guard against my over-protective nature, yet that left me consumed with self-doubt. I was not able to see clearly. I needed someone with a more distant perspective than I could manage to encourage me to aggressively pursue answers. It took me quite awhile to find that person.

In the meantime, I developed an advance/retreat strategy. Push, push, push for answers. Gain a bit of knowledge, a fraction of ground. Push for more information. Get shot down and become disheartened. Retreat. Bury my head in the sand. Shake off concerns – ignore fears, ignore fears, ignore fears! Arggggg, can’t ignore my fears anymore – push, push, push! Repeat!

That describes the early years. Every once in a while God would send a glimpse of encouragement. I remember taking Gracen to soccer practice one afternoon, frustrated that a doctor had once again downplayed my concerns, leaving me questioning. Wondering if I was seeing something that didn’t exist. I sat down next to another mother I didn’t really know as practice began. A few minutes after practice started she turned to me and said, “What’s wrong with your daughter?” And while I cringe at the insensitive way in which the question was phrased, at that moment I was thankful because she validated what I knew to be true deep down inside and gave me the courage to push some more.

There came a time when, due to the progressive nature of the girls’ disease, I no longer had to fight to have doctors acknowledge a problem existed. However, at this point I encountered an unexpected attitude from medical professionals. There is a school of thought within the medical community that promotes the idea that the root of the problem is irrelevant. Treating the symptoms is sufficient. Weary of the battle, worried about the future and afraid to look too closely into the future, I acquiesced.

Then one day, having to find yet another neurologist, I stumbled upon Dr. Phillips, a new pediatric neurologist had arrived in NW Arkansas (actually, I think she was the only “pediatric” neurologist in the area at that time). She was a tiny sprite of a thing with a warrior’s heart. After several appointments she turned to me one day and said, “I think we need to search for a diagnosis. You need to know if a condition leads to other medical issues so that we can watch for those and not be surprised by them.” So the hunt was on — and it took years.

Dr. Phillips eventually married a fellow neurologist, and became Dr. Balmakund. When her husband began working at the same clinic, Dr. Balmakund became known as Dr. Mrs. Balmakund. She is the most humble and tenacious doctor I have ever met. She is always open to suggestions from others; medical professional or not. She loves her patients and their families. She takes her undiagnosed cases to monthly conference calls with her peers and to medical conferences where she questions other specialists; always seeking to find another patient presenting with similar symptoms or to find that one specialist who has knowledge of a condition she is unfamiliar with. She has no ego where kids are concerned. She willingly sent us to other specialists and eventually one, who himself, was unable to provide a diagnosis, did suggest two tests that might reveal one. After jumping through a series of insurance hoops, a full fifteen years after Gracen’s symptoms presented, we finally had a diagnosis.

Yipee, right?

Wrong!

David and I found ourselves less than prepared to hear the prognosis revealed one Spring morning at her clinic. However, Dr. Balmakund did not abandon us but set us up with a neuropsychologist to help us work through our fears and concerns and to guide us in the best way to inform all three of our daughters of the less than desirable diagnosis we’d received. Dr. B, as she is affectionately known to many of her patients, has been there for us every step of the way — has gone above and beyond with hospital visits and follow-up phone calls. She has been a gift from God and we could not be more grateful.

In fact, God has been doubly good to us as Amy Grant used to sing. Dr. Mrs. Balmakund works in a practice of like-minded professionals who have supported and encouraged us in our most difficult and darkest moments. They have shared hard truths with love and have pushed us to seek outside help we likely would have made do without. We have needed them and they’ve simply stepped up and in.

Drs. Karkos, Scott and Balmakund have done for me what the woman in this article did for herself. They have ministered to our entire family, not just their patient. In that, they are truly remarkable and have blessed us beyond measure! They are among those I think of when I hear or think of Philippians 1:3, “I thank my God upon every remembrance of you.”

These women are but a small sampling of the men and women God has surrounded and supported us with. So very many people, some who’ve played limited roles, appearing at just the right moment, and some who’ve stood in the gap for a season, and many who have walked alongside us for years — serving as the hands and feet of Christ with a word of encouragement, extending simple kindness, or doing the heavy lifting by praying us through concerns, challenges and downright dilemmas. Oh yes, I am grateful to God for His faithful provision.

Now, I think I should go back and read paragraph one!

 

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Laughing at my Nightmare

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Stumbled across this book on my library’s digital books website. This young man has SMA, a rare form of Muscular Dystrophy (think Jerry Lewis telethon). It’s different than Gracen’s ARSACS, but both fall under the MD umbrella.

He writes with no small amount of humor and a liberal use of profanity (he particularly enjoys dropping the f-bomb) about growing up and living life with a progressive, terminal illness. (Not all forms of MD are terminal).

The chapters are short, you will laugh out loud, but you will also get a glimpse of how a disabled person views themselves, their fears, their courage, life’s hurdles, and hope amid increasing dependence and diminishing abilities.

It was an educational read for me. I know how I feel, the challenges I’ve faced as a mother of a disabled child, but I can’t crawl inside Gracen’s mind and really appreciate what it’s like for her. I can only imagine and that is hard enough.

Like Gracen, this young man’s disability does not affect his intellect. The book reveals the ways in which people of all disabilities are often grouped together. The author is blunt and not always kind, but his attitudes are reflective of the larger “healthy” community and of a young man’s thoughts and attitudes as he matures. So, a parent with an autistic child may find some of what he writes mean-spirited or otherwise offensive. I hope you will recognize Shane is a young man coming of age in challenging circumstances and is simply learning how to live with his own personal reality (nightmare) using humor as his primary coping mechanism.

It’s worth the read if you have any desire to more clearly recognize some of the unique challenges the disabled community encounters.

One more disclaimer: This young man does not shy away from uncomfortable topics including human body parts, urination, and sex – all normal parts of any healthy young man’s life. If that and foul language offends you, it’s probably not the book for you.

 

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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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Breakdown & The Calm After the Storm

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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.

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Breakdown

It’s time to get up, past time really.  Breakfast, shower, dressing . . . then my turn.  It all takes time, but I just do not want to get up and we’ll be late if I don’t get moving soon.

It’s raining.  Again.  I hate rain during the daytime.  Hair appointments at noon.  Still, I’d rather stay in bed.  Bury my head in my pillow — close my eyes — forget the world, it’s disappointments, my responsibilities — life and the fact that I’m still living it.  Breathe in, breathe out.  Breathe in, breathe out.  Over, and over, and over, and over, and over, and over again.  Why must I get up?  Why must I breathe in and out?  Why must I do it all over and over again?

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For the love of Gracen.

For the love of Gracen.

It’s all for the love of Gracen.

 

 

IMG_2964 (1)My heart is anchored here but I long to flee — from what happened — from what is yet to come — to fly far, far away.  To flee this unwelcome reality — oh, to be able to pretend it never happened!  To be able to board a time machine and travel back, back before the collision, back before diagnosis, back before Katie, before Gracen, before Bethany and Cole.  Back before marriage, back before love, back before David, back before my very existence, erasing every footprint, every memory of me.  Back before every bit of my existence tainted the lives of the people I love far more than life.  Just to have the opportunity to un-hurt others by erasing me.

It’s 10:34 a.m., I have to get up . .

I can’t.  I just can’t do it.

Tears falling.

Call David ask him to cancel our appointments.  Ring, ring.

Oh, no, she’s up! Hang up the phone.  Get it together before she sees you!

IMG_3518Ring, ring . . . Oh, crap, David’s calling back and Gracen’s right here!  I can’t talk in front of her.

Leaping off the bed, head down.

“Hey, Janet, Did you call me?”

Leave the room NOW!  Find a place where she can’t hear you!

“Janet, I can’t hear you . . .”  David’s voice comes over the phone line.

Sob.

“Janet?  Janet? What’s wrong?” David’s voice is Frantic now.

“David?”

“Janet?, What’s wrong?”

More crying.  I hear David’s breath hitch through the phone line.

IMG_3518“I’m sorry I had to leave the room.”

“Where’s Gracen?”

“She’s up.  She’s in the bathroom.”

“What’s wrong?”

Another sob slips out.

“I’ve just run out of the energy necessary to force myself to do this today.  I was just calling to ask you to cancel our hair appointments.”

“I’m coming home.”  Frantic.

“No, no, don’t come home.  I’ll be okay.  I’ll be okay.  I just can’t keep our appointments. Not enough time left now anyway.  I’m up.  I can take care of Gracen.  I just don’t want her to see me like this — to worry her.”

“Where are you?”

“Katie’s room.” The room next door to Gracen’s that now holds two twin beds without sheets and blankets, void of anything personal.  Katie’s empty room spins through my mind.

“I’m sorry for upsetting you.  Can you please just cancel our appointments?  I can’t talk to anyone right now.”

“Sure”

“Don’t come home, David.  I’ll get it together.  I’m sorry. I’m so sorry!”

Forty-three more days until Gracen heads to college.  I simply cannot unravel for forty-three more days.  I tell myself, take your meds —  get it together.  You can get up for forty-three more days.  You can.  You can.  You will.

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The Calm After the Storm

Wow! How did that get so out of control?

It was Gracen’s appearance at the same time David called back. The ring tone flooding my system with adrenaline, silent tears turned to sobs as I desperately tried to flee my room preventing Gracen from seeing me in such a state.

Oh, she’s seen me cry before, but only the controlled version.  Not ugly, wretched sobs.

But today I was not able to shelter Gracen from my grief.  I upset her although no words were spoken.  I know she is afraid she will lose another family member; she recently admitted as much.  I fear that too, but for her, all that’s left to lose are her parents — the people who have always represented safety and security to her.  I don’t want to inflame her fears.

And David — he’s seen discouragement and apathy, he’s held me through tear filled nights, he’s shouldered extra burdens when normal parts of life just seem to overwhelm me.  He’s been party to a meltdown or two or ten, but to receive a call at work — never before has he had to cope with a long distance breakdown even when I called to tell him an ambulance was transporting Gracen and I to the ER after a frantic 911 call. Today, I could hear the fear in his voice. It devastates me to know I did that to him!

Heaping fear upon grief — I shoulder my load — Gracen’s and David’s too, as they are forced to shoulder mine as well.  Grief felt far more individual when Cole died — or maybe time has just softened the memories, blurring the rough edges of grief, leaving some sharp and biting and others smooth and fading.

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Helping the Bereaved Bear their Burdens

1.  Understand that it is often a struggle for those who mourn to get out of bed, do everyday tasks, leave their homes, socialize. Others become hyper involved; anything to keep themselves moving, distract themselves from the constant pain. Those who mourn may bounce back and forth between the two extremes.

2.  Realize that the bereaved often perform a grieving cha, cha, cha of sorts.  They try to attack their grief, process and get through it, then overwhelmed, try to suppress it, hide from it, deny it’s existence and ignore it.  Be prepared to go with the flow.  Talk through their struggles with them if they bring them up, or grant them the freedom to talk about other things.

3.  Be aware that grieving families often continue to be hit with additional health problems, trips to doctors, hospitals and emergency rooms can trigger mild to dramatic IMG_3339traumatic responses. What may be a minor problem produces anxiety on steroids. Pray them through, sit with them, validate their fears.

4.  Wives seem to take responsibility for maintaining the emotional equilibrium in the home: husbands strive to protect and shelter.  Loss makes both feel anywhere from inadequate to utterly incompetent.  Grieving men need attention too. Most will never ask for it. Invite men to sporting events, movies, poker night, fishing or lunch. They may not talk about their grief, but your presence signals support and encouragement.

5.  Understand that deep grief often brings remorse for having been born at all.  Job felt this way.  Pay attention to suicidal comments — don’t discount them.  A desire to have never been born and suicidal intentions are not synonymous, however, comments to that effect should not be overlooked.  Pray for wisdom and discernment to hear exactly what the individual is communicating through veiled speech.

6.  Be aware that the sense of personal safety and security has been destroyed for every member of the family.  Fear of experiencing another loss  is both common and rational. While uncommon, many families have suffered separate and subsequent deaths of immediate family members. Please don’t discount or brush off a bereaved parent’s fears in this area. It is a legitimate fear and they need it acknowledged.

 
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Posted by on February 27, 2016 in Faith, Grief, Muscular Dystrophy

 

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Move or Remodel?

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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 a 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.

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Move or Remodel?

Several months ago David and I wandered down the hall to the main bathroom in our home.  We stood inside and outside the doorway discussing if it was possible to widen the doorway (which sits on an angle) to enable Gracen’s wheelchair to fit through the door and other changes to make the bathroom accessible for her. It was a frustrating discussion because changes could be made that would work for now but maybe not down the road as Gracen needs a bigger wheelchair or moves into a power chair that has a wider base.  If we remodel to fit Gracen’s current wheelchair, the changes would make it harder to sell our home later.  What was the best choice for now?  For the unknown later?  How to decide?

At one point I sat down on the closed lid of the toilet, bowed my head and grasp the hair on either side of my head pulling it away and growled in frustration. David’s eyes rounded and fairly popped out of his head in alarm as he asked, “Are you OK?” To which I responded something along the lines of, “NO, I’M NOT OK!!   No, no, no, no, no, I am so very far from OK!  I’m completely overwhelmed and I’m so freaking tired of trying to find the positive in the negative, of getting up every day without Bethany and Katie, of watching Gracen’s body change, of living!”  A sob escaped and tears fell as David pulled me to my feet and wrapped me in his arms until the tears subsided.

I didn’t, I still don’t want to move away from my home.  Figuring out what we need in a new home is overwhelming; it’s costly, and how am I suppose to plan for the unknown future?  How do I leave this place where my children grew up without them?  How do I move into a new place without them around to make new memories?  This home bears witness to their existence.  To love and laughter and tears — to the last remnants of our intact family (as much as any place could in the absence of our stillborn son, Cole).

That young man stole my daughters and Gracen’s mobility and now here I am, sorting through Bethany and Katie’s things in fits and starts, parsing out their lives bit by bit. Give it away? Keep it?  Oh, God, throw it away?  Troy Robins, an unlicensed & reckless driver, took Bethany and Katie’s lives and now I’m systematically removing them from my home; from their home.  It feels so very wrong — as if I’m throwing my children away.

No, no, no, no, no, I am so not OK!



 

Helping the Bereaved Bear their Burdens

1.  Listen closely to what the bereaved say.  If they tell you they are struggling with something, try to think of practical ways to help. Pray for those specific concerns.  Keep your eyes open for needs they might not mention; yard work, snow removal, dishes that need to be washed, etc., then step in and take care of it.

validation-quote2.  Realize that you cannot fix their sorrow and they don’t want you to try. They want their pain acknowledged, not ignored, not rebuked, not corrected, and definitely not minimized. Validate their feelings and affirm their ability to carry on. Be aware that their faith may be strong but they are weak in so many ways.  They will likely feel as if their faith is not sufficient to see them through. Do NOT imply or state outright that God allowed their loss because their faith was strong enough to survive their loss!

3.  If they tell you they are having a hard time going through their loved one’s things, offer to come and help, or to simply sit with them as they do it.  Do NOT try to go through those things with a get ‘er done attitude.  Expect to listen to the bereaved reminisce.  Expect tears.  As uncomfortable as tears make us feel, they are a much-needed outlet for the grieving.  Venting their sorrow is healing, so don’t cut and run at the first sign of tears. Locate the tissues.  Offer hugs, if appropriate.  *Please note, an offer to help with a task such as this should generally be extended by a close personal friend or family member.

images (39)4a.  The grave site can be a place of comfort or distress.  Every bereaved individual is different (which I realize makes supporting the grief-stricken challenging and scary). Some spend a lot of time at the cemetery, others rarely go.  It’s generally a big deal when the headstone is finally placed.  The headstone often represents the only permanent legacy of the deceased. Offer to take the bereaved to the cemetery. Comment on the things you sincerely like about the marker they’ve chosen and the location selected. Never offer a negative opinion about either the burial site or the headstone!

images (40)4b.  Likewise when the deceased is cremated, the day the bereaved receive their loved one’s ashes is also a big deal. They’ve carefully chosen the urn—no negative comments! Some people display the urn, and others choose not to. Validate their choice as there will be people who are uncomfortable seeing an urn prominently displayed in a home and they will, unfortunately, let their feelings on the matter be known.  There will also be people who will not understand if the grief-stricken choose not to display the urn.  The bereaved often feel torn on such matters, and they need to do what feels best to them.  No good, but plenty of harm, can come from burdening the bereaved with other’s opinions and expectations.  If the bereaved choose to scatter their loved one’s ashes, honor their decision both in regards to how they wish to do it and who they wish to be present.

589232dd75cf172bd2447b660095985e5.  Extended family needs to honor with grace the way those in mourning choose to handle holidays, anniversaries and birthdays.  I’m well aware that extended family members also grieve and may be disappointed or even hurt when the bereaved choose to forego family gatherings.  But frankly; it’s not about you! The highest degree of consideration should be shown to those with the closest personal connection to the deceased. Piling guilt upon grief is insensitive and unkind. Expecting the bereaved to celebrate, to be surrounded by intact families, to shake off their sorrow for the sake of the rest of the family is unrealistic and frankly puts undo strain on the brokenhearted. Family togetherness may be beneficial to some, may lift their sorrow and make them feel supported, but not to others. Be considerate.  Love your bereaved family members enough to set aside your own desires in order to grant them the freedom to mourn without criticism and resentment for the choices they make.

**A word about bereaved parents of married children.  When a married son or daughter dies, a unique set of circumstances arise.  Depending upon the parent’s relationship with their in-law, things can go smoothly or be very difficult; especially when grandchildren are involved.  Please pray for these families.  Pray that the grieving parents and in-law can agree on funeral and burial arrangements, on seeing and spending time with the grandchildren, on holiday and anniversary plans.  Emotions run high, relationships can be destroyed, and heartbreak can be compounded.  Pray that both the parents and the in-law will be considerate of the other, that they will each be willing to compromise, and that the best interest of the grandchildren will be a priority on both sides.  As a friend of either the parent or the in-law, allow them to vent their frustrations and I can’t say this enough, validate their feelings!

IMG_93356.  Assume that everything the bereaved tells you about how they are feeling or challenges they are facing, is confidential. A solid friendship can be utterly destroyed if the bereaved feels they are being gossiped about.  Grief is hard.  It hurts.  Should someone inquire as to how the bereaved is doing, a safe response is, “She’s okay. She’s working through her grief.” Feel free to ask the bereaved how they would like you to respond to questions about their well-being and if there are prayer requests you can share. When in doubt, go with the safe response above.  An individual who is normally an open book may become uncharacteristically private when they feel most vulnerable.  Err on the side of discretion!

7.  Be aware that the death of a loved one often leads to further problems, such as our need to find a fully wheelchair accessible home.  Families are often left with staggering medical bills, traumatized children, loss of income, broken marriages and deep spiritual wounds. The bereaved are left emotionally overwrought, frightened and sadly, ashamed. Pay attention and look for practical ways to help.

 
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Posted by on February 23, 2016 in 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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Hard Times, Satan’s Devices & Faith

Hard Times, Satan’s Devices & Faith

The last quarter of 2015 was particularly hard for me.  Gracen had settled in well at JBU, David had changed responsibilities at work, which he was really excited about.  I on the other hand, encountered, a big gaping void.

Preparing to send Gracen to college and living independently after I had spent the last year and a half helping with her personal care needs, left me anxious on a level I’d never experienced before.  Her physical safety was my primary concern and following the deaths of three children, let’s just say I had little confidence that I would not lose Gracen too.

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In addition, in April or May of last year I began fielding a new and distinctly different set of questions.  With graduation on the horizon people began asking me what I intended to do with my time – with the upcoming “empty nest”.   Not one person acknowledged that I was not supposed to have an empty nest.  No one seemed to realize that fear for Gracen’s safety, a premature empty nest and an utter lack of purpose might be frightening and emotionally overwhelming.  Then again, maybe people did understand but felt ill-equipped to address it so avoidance was deemed the most comfortable solution for everyone; myself included.  Unfortunately, avoidance left me feeling alone, stranded in my grief, disappointment and fear.  It also left me feeling as if Katie was unimportant in the eyes of the world and as if my fears for Gracen’s safety were unreasonable in spite of the fact that I knew Gracen was at high risk for injury on campus.

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So, by the time graduation passed, I was a bit of a mess.  I began taking an anti-depressant early in 2015 and by June I was unquestioningly aware that I needed more help.  So an anti-anxiety medication was added to the mix and it made a significant difference.  I had not realized just how much anxiety I’d been living with until the miracle of modern pharmaceuticals provided some much needed chemical relief.

Still, I was weary, frightened and at loose ends so once Gracen settled into school and dorm life, I settled into my bed.  I found myself alone, overcome with the grief I had suppressed in Gracen’s presence, fighting to process it or push down to avoid the excruciating pain and rudderless. I also began sleeping later in the day which affected my medication schedule.  One day I realized that I couldn’t recall when I’d last taken my prescriptions.  Knowing I had an upcoming appointment with my PCP I decided to wait to see him so he could help me restart them safely.  Looking back, that was not a good decision.  A downward spiral took hold.

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A typical day looked . . . okay, looks (present tense), because this is still a typical day in my world . . . something like this.  I wake up, get a cappuccino or chai latte, return to bed to read.  I read, write, browse Facebook and email and nap on and off throughout the day. David comes home, FOX news comes on and more often than not he makes dinner.  After dinner, I read, he watches Fox and plays on the computer and finally, lights out.  I toss and turn, mind whirling and when I can’t stand my thoughts and the inability to fall asleep any longer, I start reading again.

Unless I have an appointment with my grief counselor, my trauma counselor (for PTSD), or my PCP everyday is much like the day before.  I’m comfortable with that.  The silence and being alone is easier than being around people. People make me anxious – incredibly anxious.  How does one answer all the oh so simple questions without making others uncomfortable?  How do I answer them without feeling pitiful myself?  “What have you been up to?”, “Will you get a job?”, “Any new hobbies?” A simple, “I’ve missed you” leaves me paralyzed and frantically searching for an appropriate response.  “Me too” is what longs to escape but “Um, thank you” is generally what spills forth.  And as to the what have you been up to question, not much is my reply. No new hobbies, no plans for a part-time job.  The reasons for those brief responses go unspoken as the listener will either feel uncomfortable with my answer or will try to explain to me why a job or hobby would benefit me.  Regardless, a simple “no” is awkward enough as it doesn’t open the door for further conversation.

Is my current daily activity healthy?  Surprisingly, the answer is yes. . . and no.

All those churning thoughts and my writing are a means of working through my grief. The reading is also good for me.  I read suspense, mysteries, thrillers, and romance. They engage the mind.  If I was simply laying in bed, not working through my sorrow and not engaging my mind, that would be cause for concern.

Facebook and email allow me safe access to the outside world.

And the sleep; it’s good too.  I’m trying to take my PCPs advice and get some much needed rest.  He pointed out that should I fail to recharge spiritually, physically and emotionally, I will be running on empty when Gracen inevitably needs additional support. To say Gracen’s shift from walking to using a wheelchair was an enormous change is an understatement of vast proportions.  Wheelchair use involves a mirad of complications I had never considered.  Transfers into and out of the wheelchair, bathroom use with and without handicapped facilities, transporting the chair, finding safe and viable entrance and exit doors, dealing with weather – oh my, dealing with weather!, and a multitude of unforeseen considerations became the new norm.  No one can estimate the demands the next transition in her health will require.  Therefore, I need to be prepared, or be able to get up to speed quickly, in spite of the emotional impact those changes bring.

So I find myself withdrawing from the world around me, to rest, to grieve, to avoid assuming responsibility for making others comfortable with the realities of my life.  I don’t have the motivation or the energy to continue to push myself. Gracen was my motivation.  For her, I would, and still do, force myself forward, but in her absence . . . I lack the impetus to do much of anything.  I’ve struggled with the blues in the past, but never before have I found myself fitting the defined parameters of the clinically depressed.  Just hearing those words uttered by my grief counselor left me deeply ashamed and utterly humiliated.

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Why?  Why would a diagnosis of clinical depression leave me ashamed and humiliated?  I mean really, my counselors keep reiterating that I have suffered loss on a scale uncommon to the average individual, so depression is certainly not an uncommon or even an unexpected response.  I think I felt ashamed because depression is a mental illness and in our society a stigma is still attached to mental illness. Secondly, I had higher, albeit, unrealistic expectations for myself and for my faith.  Clinical depression represented, in my mind, both a personal failure to overcome and, far more painfully, a failure to avail myself of the power of God.  It stank of insufficient faith; not an insufficient God.

At some point along the way I drank the kool-aid and ascribed to the cultural expectation that I was capable of conquering every obstacle by sheer force of will and tenacity.  I should have realized, and in fact, from an intellectual perspective alone, I knew that was lie of epic proportions straight from the slithering serpent in garden of Eden.  That far too prevalent belief system is nothing more than the heart and mind’s rebellious desire to proclaim the soul god.  It’s the cunning and insidious whisper of the snake luring us into believing that with enough knowledge, with enough determination, with enough effort, we are in control.

347cd084-1316-4a6b-ae11-7351050ea284In truth, that idea is nothing but a craftily designed hologram. An idea without formative substance. It’s equivalent to the land of Oz and the impotent wizard hiding behind the castle doors and green drape.

How many times have you heard or used the analogy that if it walks like a duck and talks like a duck, it’s a duck?  Therefore, a Christian can easily conclude in the deeply buried regions of their heart and mind, that if they fail to conquer the human emotions grief generates, from guilt to fear, sadness to anger, and so forth, they are failing to walk by faith.  They are failing to apply the principles of their faith.  They are not the Christian they believed themselves to be and often worse, they have failed to live up to the perceptions and expectation of fellow Christians to inspire saints and sinners alike, to give God glory and praise in the midst of their despair and to minister to others.  In other words, God is not insufficient, their faith is insufficient.  They have failed God’s test of their faith.

But is that really true?  This duck analogy sounds good, but is it universally applicable? The truth is that in a paradoxical fashion, faith demands doubt.  The very essence of faith is to fall short of fact.  Jesus has always been the bridge that spans the gap between what we know to be fact and what we trust to be true.  When my faith, when your faith, falls short of expectation are we then dismal Christian failures?  I don’t think so.  We have simply lived up to the limits of our personal faith at that point of time – and lived up to the very essence of faith in general.

The longer I live the more aware I am of exactly how dependent I am upon the Lord God Almighty.  I am the instrument He forms at the potters wheel for His use.   I am made in His image but I was not, nor was any human, created with His perfect power and holiness. As a result, I am vulnerable to temptation and a failure to differentiate between truth and lies and good and evil on occasion.  And yes, I have fallen victim to Satan’s devices.  I’ve both allowed Satan to cunningly communicate a stark untruth about a simple diagnosis and to lead me to question God’s love and kindness by contemplating the idea that He may have withheld the desires of my heart in spite of the fact that I did my best to delight myself in Him.

What exactly does it mean to delight yourself in the Lord you might ask?   Gotquestions.org addressed that very question and their answer follows:

Psalm 37:4 says, “Take delight in the Lord, and he will give you the desires of your heart.” Taking delight in the Lord means that our hearts truly find peace and fulfillment in Him. If we truly find satisfaction and worth in Christ, Scripture says He will give us the longings of our hearts. Does that mean, if we go to church every Sunday, God will give us a new Rolls Royce? No. The idea behind this verse and others like it is that, when we truly rejoice or “delight” in the eternal things of God, our desires will begin to parallel His and we will never go unfulfilled. Matthew 6:33 says, “But seek first his kingdom and his righteousness, and all these things [the necessities of life] will be given to you as well.”

Did God withhold the desires of my heart?  No.  Children were my heart’s desire and I’ve been blessed with four.  I got to love and nurture each one for a finite amount of time.

Did God steal the desire of my heart from me?  The answer to that is no as well.  My children were on loan to me.  They were always His creation and David and I the chosen stewards.

Were they taken from us because we proved to be unworthy stewards?  I don’t believe that at all, in light of scripture.  God predetermined the number of my childrens’ days and in the case of my daughters he allowed man’s free will to intersect with Bethany and Katie’s number of days.  The Bible tells us that sin impacts all of creation and the cost of sin is death.  So be it accident or illness, intent or natural event, all death can ultimately be traced back to sin.

IMG_4284 (1)My grief recovery is complicated by the anticipation of more loss and the very real and reasonable fear of the destruction another loss will wreck within my heart.  Even grieving families that aren’t dealing with progressive disease often struggle with the anticipation and fear of more loss.  They’ve lost their naiveté – they know bad things can and will happen to them – not someone else – down the road.  But for most it is a vague Spector on the periphery of their minds.  For me it is a far more tangible presence and I must find a way to make peace with that and what it teaches me about the Lord.

Our family was living with progressive disease long before the collision that took Bethany and Katie’s lives. The difference between then and now is the loss of worldly hope.  There is a popular saying, “Where there is hope, there is life.”  I have lost the majority of my worldly hopes.  I know just saying that out loud will cause a great many people to reflexively remind me of all the worldly hopes that still lie before me.  What they don’t understand is that I no longer wish to have any worldly hope.  Worldly hope leads to expectations.  Expectations often lead to deferred hope and as we are told in Proverbs 13:12,  “Hope that is deferred afflicteth the soul: desire when it cometh is a tree of life.” – Douay-Rheims Bible.

I prefer to invest my expectation in eternal hope alone; that of eternal life with my savior and fellow saints, because that hope is the only one guaranteed to come to fruition.  I’m confident my hope of eternity will be fulfilled and not deferred.

However, I have yet to make peace with the role progressive disease will play in our lives, precisely because of all my prior losses.  It feels unfair.  It feels too much to ask of any one believer.  If this is what God’s love looks like, my more cynical perspective leads me to beg Him to share the love (with someone else)!  And yes, God can carry me through anything He allows to happen in my life, but before anyone reminds me of that truth (because I am well aware it’s true) put yourself in my shoes.  Google ARSACS (a rare form of Muscular Dystrophy) and read about what it does to an individual and then imagine walking that path with your child.  Imagine helping your child as their health declines.  Imagine standing by helpless to change it or improve their quality of life.  Imagine the things I’ve eluded to and left unspoken.  Making peace with God’s plans, with His will, with His sufficient grace is far harder when it’s personal, when you find yourself “feeling” as if His grace might not be quite be sufficient for you after all you have endured already.

PTSD-battle-PINI have reached the point of acknowledging that the best I may be able to hope for in regards to ARSACS, may consist of a cycle of repeated but temporary interludes of peace.

We live in a continuous grief cycle.  Gracen loses a previously mastered skill and we mourn and despair it’s loss and the daily ramifications that ripple out in waves from that loss. Eventually, we adapt to her new normal and settle into a wary peace until the cycle restarts with a new loss.  It’s just the way life works in our home.  Every time the cycle begins anew, we hurt.  Fear arises as does disappointment and sometimes even despair. I’m not sure if the Holy Spirit is actually doing a new work of trust and peace with each cycle or if each cycle simply forces me to acknowledge an as yet unconquered weakness (or doubt) in my faith.  Maybe I just keep spinning my wheels without making any forward progress.  Yet a person who is maturing rarely notices the subtle changes until enough growth has occurred and their pants are inch too short.  I imagine spiritual maturity is as subtle a process as manifest in physical maturity.  It’s only looking back far down the road that real progress is recognized.

Food-antidepressantToday, I am doing well to say without shame, my name is Janet Boxx.  I am clinically depressed.  I have anxiety issues.  I have PTSD.  I self medicate my anxiety with food.  (Ok, that I’m ashamed of – although I’m happy to report that while I may be a glutton, at least for now I’m not a suicidal, drug or alcohol addicted, glutton).  I lack the motivation to return phone calls, emails  and text messages; to clean my house, pay bills, shop for groceries, do laundry and sometimes even to shower.  It is what it is and my response to my life’s circumstances is not abnormal in the bereaved parents community, even two years down the road.

Having said all that; do not drop by unannounced!  I still have the capacity to feel great embarrassment and utter mortification.  Just because I’m comfortable in my current state of sloth doesn’t mean I’m equally comfortable having friends and family witness it.

Before speculation germinates, let me just say that David has demonstrated the utmost patience and support. He has taken on the tasks I normally do without complaint, anger or resentment.  He has a servants heart and demonstrates his love for Gracen and I in actions more than words.  He guards my privacy. David is better at compartmentalizing his grief than I am.  He has not, nor has ever, abandoned me to my grief and more importantly has never criticized or judged the way in which I am coping with the very same losses he, himself, is dealing with.  Our experiences with trauma are different because we were exposed to different things and took on different roles at the scene of the accident, at various hospitals, at home caring for Gracen during her recovery, with the medical community and the legal system and we simply deal with trauma differently.

This is what my life looks like when the Potter decides the pot He previously formed has served its intended purpose.  This is what my life looks like once I was fractured into minuscule pieces, returned to softened clay, and set to  spinning on the Potter’s wheel while He molds me into a new shape with a new or more complicated purpose in mind (after all, I am still a wife and mother).

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And you know what?  As ugly as this lump of clay currently is, as uncomfortable as it is for me to find myself in this state, it’s okay to be a lump of clay in the Creator’s hands. There is no safer place to be and while others, myself included, may worry about who and what I’m becoming, I’m confident God is not.  He sees beyond the here and now – past the dark tunnel I’m traveling through – clear to an eternal future where He will literally light my world.

 
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Posted by on January 29, 2016 in Adversity, Faith, Grief, Muscular Dystrophy

 

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A Day in the Life . . .

It was a rough morning. I woke up and as has become my practice of late, rolled over hugging my pillow tight to my chest to offset the ache that is forever present in my heart. I lay there thinking, thinking, thinking. Torn between wanting to find a life for myself and simply wanting to melt into my mattress and quietly fade away.

A phone call from the speech therapist interrupted my musings. Therapy to learn how to control Gracen’s respiration is recommended. Apparently, speaking is far more complicated than the general public, myself included, realizes. As the therapist explained to me, we all control our respiration in order to make our speech smooth. When your breath is either limited or comes out in bursts, your speech is adversely affected. The inability to control respiration will likely result in incompressible speech necessitating the use of a communication device. We can start respiration therapy now or wait until the communication device arrives. I’d prefer to start now but it will depend on Gracen’s availability based upon next semester’s class schedule. Still, I ask probing, unanswerable questions about what we can expect vacillating back and forth in my mind between the bliss of ignorance and the power of knowledge. Can I afford not to know? I envy the days long past where that was not a question I need entertain because the future was simply unknowable – there was no prognosis – dread wasn’t my constant companion.

I drag myself from the comfort of my bed in order to get ready to have lunch with my best friend in Northwest Arkansas. I’m looking forward to seeing her, yet dragging at the same time. I’m constantly tired, morose and melancholy, even as I prepare for enjoyable activities.

I decide to call the funeral home to follow-up on the request to get my daughters’ fingerprints in order to have them made into a necklace for me and a keychain for David. I’d really like to have it for Christmas but decided to look into it far too late to have a reasonable expectation of seeing that happen. I called two weeks ago and never heard back. It’s hard to make calls like this and I’ve not been able to muster the motivation to call back before today.

So I place the call once again and am once again told that a Funeral Director will return my call. Today I get a quick call back informing me that they don’t take fingerprints unless the family requests them and of course, we had not requested them. Even if we had not been busy taking care of Gracen, I would never have thought to make such a request. And my heart is broken yet again. The tears flow freely as David tries to comfort me.

When will I learn not to hope? Everyone thinks hope is such a good thing, but it seems to be my nemesis – setting me up for repeated disappointment I can little afford to endure.

Why does God withhold such a small consolation from a grieving mother? What possible harm could come from being able to wrap my hands around the proof of my daughters existence and their importance in my life?

Do I dare call the funeral home the girls were initially transported to following the accident or am I simply setting myself up for yet another disappointment. I want to hope but am not sure I can endure hearing “No” once again. What to choose, ignorance or knowledge? Bliss or power? Hope or hope deferred?

Where there is hope, there is life, I’m told. Hope grows like a weed, in darkness and drought; tenaciously it grows. I know, I know if I call the funeral home in Anderson, Missouri, they will tell me that, no, they do not have the girls fingerprints and yet my broken heart wants so much for the miraculous to occur. Do I subject myself to more disappointment just to be absolutely sure that there is no hope for a positive response?

So following my lunch out, I send David and Gracen off to see the newest Hunger Games movie and crawl back in bed, pulling my pillow into my chest and curling into a self-protective fetal position instead of wrapping the Christmas gifts I need ready to transport come Wednesday. Not making a decision is in fact choosing to do nothing. By default, at least for now, a phone call won’t be made. And hours later I’m second guessing my decision to refrain from making a decision. At least if I’d called, all the disappointment would be confined to one days time. Well, that’s not strictly true as every day I face the disappointing loss of my daughters and the discouragement of progressive disease follows quickly on its heals.

I’ve learned to anticipate the next blow – it prepares my heart for the inevitable pain that follows much like a boxer who tightens his abs when he sees the next punch coming. It just hurts a little less when the blow lands. So I guess living in a state of hyper awareness is actually good for me. There’s the silver lining, the positive to negate the negative for the choose joy contingent. What’s one more hard day in a string of hard days? As it’s been said by some anonymous source, my track record for surviving bad days is 100% thus far, and that’s pretty good.

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Posted by on December 23, 2015 in Chronic Illness, Faith, Grief, Muscular Dystrophy

 

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What is the Value of a Child’s Life?

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I recently recognized that a series of issues I’ve been struggling with all have one theme in common.   The thing that ties each of these issues together boils down to the worth of my children.

Death seems to strip an individual’s value from them in the eyes of the world.  Daily life moves forward and it’s not long before the phrase, “Out of sight, out of mind”, applies.

What is the value of one child’s life?  To their parents, their siblings, their extended family, their circle of friends and acquaintances, to the community they lived in and even to the world at large?  It doesn’t take a genius to figure out that their value generally diminishes as you go through the list.

The grieving long to have their loved one’s worth acknowledged, appreciated and validated beyond the funeral and burial, beyond the first week they return to work, beyond the year of firsts, beyond . . .

This bereaved parent questions her own value as well – to God in particular.  I wrote this quite awhile back.  It’s a prayer of a sort, and deeply personal, but it clearly reflects how circumstances can cause a person to contemplate their significance.  Keep in mind that my first child was stillborn, then I lost two in a car accident, and my surviving child has a rare and progressive form of Muscular Dystrophy.  I’ve taken a series of hits.

“Am I so much more expendable than other Christians?  Do my hopes and dreams mean so much less to You?  From a logical perspective I know the answer to those questions is no, but from an emotional perspective I’m not so confident.”

“Why do You keep hurting me or allowing me to be hurt?  Do I just suffer well for the cause?  Am I too stubborn or rebellious to learn the lessons you want to teach me without suffering?”

Value and worth, it’s a struggle I see other parents who mourn wrestling with.  Support groups, blogs, and Facebook posts are filled with the underlying theme.

Some make a shrine of their child’s room.  And the outside world shakes their heads in pity – failing to understand why.  Honestly, the parent may not be able to put into words why they do it themselves.  But their child’s possessions are a visual, touchable testimony of both their existence and who they were below the surface.  That room and the pictures they treasure, are often all the parents have to hold onto.  They’ve lost their child and cling to the things they loved and touched in their absence.

And really, if you think about the alternative, can you blame them?  Does anyone really think about the emotional price a parent pays when they sort through the remnants of their child’s life?  Do they realize how it feels to decide what to give away – and who to give it to?  What to keep.  What things most effectively reflect the child they loved.  What to throw away; now that, well that’s the nauseating one.  Disease or accident, murder, suicide, or addiction,  military or public service, has snatched their child from their hands and now they feel as if they are choosing to throw away their child, bit by excruciating bit.  Maybe the shrine makes more sense now.  It’s not shameful, it’s nothing less than a grieving parent defiantly refusing to toss away the evidence of their child’s life.  It’s all about value and worth.

Almost two years after the collision that killed my daughters, I am still sorting, still deciding what to keep, what to give away – what to throw away.  Granted, I was caring for Gracen, but I’ve had time to complete the task.  Every once in awhile, I open the doors to the two rooms that hold the things my children once touched and I make value judgments until my heart can tolerate it no more.

Some parents set up foundations in their child’s name for a cause their child was passionate about or to raise funds or awareness for the disease or tragic circumstance that took their child from them.  Those foundations meet needs, keep their child’s memory alive, and validate their child’s worth.  And some parents stand jealousy on the sidelines because their child did not live long enough to discover their purpose and passions.  There will be no foundation and their child will all too quickly be forgotten, overlooked, or intentionally left out for fear of reminding the grieving parent of their death.  Personalized gifts will not include their name, you will be introduced as the parent of one less child – and the parent of a stillborn child will not be asked about their child’s birth weight and length; all in the name of compassion.  It’s not always true that actions speak louder than words.  It’s amazing how loudly silence speaks.

Polite society encourages the family to let go, move forward, have another baby, take in foster children, adopt, and of course, be thankful for the children you have left; unwittingly conveying the message that the child you lost no longer has significance and that continued grief equates to a lack of appreciation for those you still have.

And the grief-stricken parent fights the war within; attempting to reconcile the worth of their child between the messages they receive from society and the intellectual truth that their child’s worth never stemmed from their accomplishments but from the fact that they were theirs and created by God.

The grieving parent is begging – demanding really – that society validates the worth of their child; their contribution, their significance in this world; regardless of their length of life.

I’m not sure any parent passes through the grief process until they either “feel” the validation they crave (because a small group of people do just that) or until they resign themselves to the real truth – that it is enough if they alone recognize the worth of their child in this world.  The battle within has been won, the enemy defeated by love – the love of God and the love of the parent.  The only thing the parent needs to let go of is the desire to have their child’s worth validated by society.  However, that’s easier said than done.  Knowing what needs to be done does not make it easy to do.  The heart wants what the heart wants, and it’s a process that’s mastered one painful step at a time.

 
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Posted by on November 18, 2015 in Grief, Muscular Dystrophy

 

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Laughing at my Nightmare

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Stumbled across this book on my library’s digital books website. This young man has SMA, a rare form of Muscular Dystrophy (think Jerry Lewis telethon). It’s difference than Gracen’s ARSACS, but both fall under the MD umbrella.

He writes with no small amount of humor and a liberal use of profanity (he particularly enjoys dropping the f-bomb) about growing up and living life with a progressive, terminal illness. (Not all forms of MD are terminal).

The chapters are short, you will laugh out loud, but you will also get a glimpse of how a disabled person views themselves, their fears, their courage, life’s hurdles, and hope amid increasing dependence and diminishing abilities.

It was an educational read for me. I know how I feel, the challenges I’ve faced as a mother of a disabled child, but I can’t crawl inside Gracen’s mind and really appreciate what it’s like for her. I can only imagine and that is hard enough.

Like Gracen, this young man’s disability does not affect his intellect. The book reveals the ways in which people of all disabilities are often grouped together. The author is blunt and not always kind, but his attitudes are reflective of the larger “healthy” community and of a young man’s thoughts and attitudes as he matures. So a parent with an autistic child may find some of what he writes mean-spirited or otherwise offensive. I hope you will recognize Shane is a young man coming of age in challenging circumstances and is simply learning how to live with his own personal reality (nightmare) using humor as his primary coping mechanism.

It’s worth the read if you have any desire to more clearly recognize some of the unique challenges the disabled community encounters.

One more disclaimer: This young man does not shy away from uncomfortable topics including human body parts, urination and sex – all normal parts of any healthy young man’s life. If that and foul language offends you, it’s probably not the book for you.

(Facebook Post 10/2/15)

 
 

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