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Category Archives: Chronic Illness

Seasons of Disease and Death – Where Life Gets Real

I’ve been reading and meditating on John Chapter 9 and 11 of late. Those two chapters are significant to me because they touch on the very things that have most impacted my adult life – disability (or illness) and death.

John 9 chronicles the story of Christ healing the man blind from birth.

John 11 tells of Christ raising Lazarus from the dead.

As I mulled those scriptures over in my mind I looked for similarities and differences. I noted that the blind man didn’t seek Jesus out for healing, but Jesus healed him anyway. And as I thought about that blind man I wondered why he didn’t seek out this miracle performing man. Surely he had heard the gossip. John 9:32 might answer that question for us.

“Since the world began was it not heard that any man opened the eyes of one that was born blind.”

The blind man held no hope for healing. Never had it been reported that a man born blind had been made to see. It was a foregone conclusion in his mind that he would never see the world around him. Why chase after the prophet who was stirring up so much controversy? How could he even find his way to the prophet? So he sat in acceptance of the circumstances he had always known with no hope of changing them as the world passed by around him.

I understand that mentality all too well. It’s hard to carry the hope of healing while simultaneously accepting what is deemed unchangeable. How does one invest the effort required searching for a cure while expending so much energy coping with what is? How was the blind man supposed to hunt for this wandering prophet when his very survival was contingent upon the alms he begged for day after day?

On the other hand, Mary and Martha knew that Lazarus could be healed. They had access to Jesus. They had cultivated a relationship with him. They believed He was the long awaited Messiah. They had likely seen Him heal others. So they sent for Jesus communicating their dire need for His presence. And then they waited . . . and waited . . . until it was too late and their brother was dead.

And when Jesus finally showed up their deep anguish bubbled up and out their mouths as they each told him that Lazarus would not have died if he had been there. Their faith is revealed alongside their confusion and vulnerability. They trusted Jesus to come, to step in and save the day. But he didn’t do it. And they still trusted him for resurrection at the last day.

One man without faith – without hope.
Two women with faith – with hope.

And in a rare turn of events Jesus answers the most common and difficult question that always arises when death and disease become a part of our lives. Why?

Why was this man born blind?
Why did Lazarus die?

And the answers are strikingly similar in both situations. In regards to the blind man Christ responded, So that the works of God could be revealed through him. And when questioned on the reason for Lazarus’s death He replied, So that God and the Son of God would be glorified.

Sandwiched between those two stories is John chapter 10 where Jesus proclaims, “I am the good shepherd”! And in that chapter Jesus lays bare the reason for which he came, “. . . That they might have life, and that they might have it more abundantly (in the fullest measure).” He proclaims his power to both lay down his life for the sake of his flock and to take it up again. He proclaims himself to be the long awaited Messiah. And maybe most remarkable of all is that he flat out tells his audience how to prove that he is not who he says he is. He tells them that if they won’t believe his words, they should believe his works.

And isn’t it interesting that “I am the good shepherd” falls right between the stories of death and disability? In the grand scheme of things what leads us to question the meaning of life more than disease and death . . .

When disease or disability become our eventual reality, we can be confident that there is an important purpose for our suffering – that the works of God might be revealed through us. And when death invades your life, stealing away your hopes and plans we can be assured that God and the Son of God will be glorified.

7 But we have this precious treasure [the good news about salvation] in [unworthy] earthen vessels [of human frailty], so that the grandeur and surpassing greatness of the power will be [shown to be] from God [His sufficiency] and not from ourselves. 8 We are pressured in every way [hedged in], but not crushed; perplexed [unsure of finding a way out], but not driven to despair; 9 hunted down and persecuted, but not deserted [to stand alone]; struck down, but never destroyed; 10 always carrying around in the body the dying of Jesus, so that the [resurrection] life of Jesus also may be shown in our body. 11 For we who live are constantly [experiencing the threat of] being handed over to death for Jesus’ sake, so that the [resurrection] life of Jesus also may be evidenced in our mortal body [which is subject to death]. 12 So physical death is [actively] at work in us, but [spiritual] life [is actively at work] in you. ~ 2 Corinthians 4:7-12 AMP

Our suffering is not in vain but has eternal value. And in the seasons of disease and death, where life gets real and all we’ve worked for and stood for is called into question, stands the good shepherd who is worthy of our faith and trust, who leads us and cares for us and is powerful enough to usher us from this earthly fold into eternity where we will experience life in its fullest measure.


***(From Wesley’s Commentary on 2 Corinthians 4:10 – alittle help understanding verse 10)

” . . . Wherever we go. . . Continually expecting to lay down our lives like him [Jesus]. That the life also of Jesus might be manifested in our body – That we may also rise and be glorified like him.”

 
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Posted by on July 25, 2017 in Chronic Illness, Faith, Grief, Uncategorized

 

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It’s World RARE Disease Day . . .

aegerion-pharmaceuticals-obserWhy is that important to anyone outside the special needs community? It’s important because one day rare disease may impact you or someone you love.

No one thinks it will happen to them . . .

but it happens to someone . . .

to multiple someones, every single day in this world.

And fear and frustration follow in the wake of diagnosis every time.

Every time.

Sometimes determination and tenacity are birthed . . .

Sometimes crippling despair and anxiety.

Welcome to the world of rare disease!

193057pnguTwo of my daughters were born with a rare genetic disease known as ARSACS. For 15 years their disease went undiagnosed. In fact, only two labs in the US were testing for ARSACS at the time of Gracen and Katie’s diagnosis. World Rare Disease Day seeks to raise awareness and promote research for diseases that are far less likely to receive research funding than common diseases do. That’s why I support Rare Disease Day.

rare2-300x300I’ve learned much about the medical community in my sojourn through rare disease. I’ve met warriors and wimps, fighters and folders, the courageous and the weak-kneed and have discovered that some emotionally separate themselves, and some, the bravest of the brave, count the cost and invest their hearts and souls with little regard for their own mental health. Many ride the tide between the positive and negative—between hope and hurt—just as parents, friends, and family do. They paint on brave faces then hide in the supply closet as tears flow unchecked down their faces. They smile encouragement and swallow back the fear of failure to cure, treat, and simply to help. And they carry the weight of the dashed hopes and expectations that loved one’s pile on their shoulders as they reach, ache, and long for a cure—a treatment—a miracle. They see victory . . . they experience defeat . . . all with the frailest of hope that one day, one day, disease will be vanquished and hope will reign supreme. And the wimps and folders, the weak-kneed and the emotionally distant are far too frequently former warriors and fighters, the courageously tenacious and the bravest of the brave who have stood in the gap for so many and for so long that they have paid a high personal price in the form of compromised mental and emotional health.

Did you know health care professionals, as well as family caregivers, are at risk of PTSD?  It’s due to the repetitive trauma of treating and viewing horrors we’d all rather be ignorant of.

logo_arsacsToday, World Rare Disease Day 2017, I’d like to take a minute to appreciate and thank the dedicated medical researchers and practitioners that invest so much time and effort searching for cures, prescribing medications and treatments, holding the hands and hearts of those desperate for answers and hope.

Thank you to the nurses, doctors, technicians, researchers for the kindness you offer. Thank you for treating the families with respect and dignity in the face of brokenness. Thank you for answering questions, returning phone calls and emails, and telling loved ones hard truths. Thank you for gaining knowledge and for just showing up, encouraging, and extending support along this difficult path.

And thank you to the clinic staff that handle everything from making appointments, ensuring calls get returned, and even for haggling with insurance companies and making sense of the numerous bills that lick at the heels of world-weary parents and spouses.

Thank you for caring and for doing your jobs to the best of your abilities.

I see you.

I appreciate you.

 
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Posted by on February 27, 2017 in Chronic Illness, Muscular Dystrophy

 

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How not to say the wrong thing – LA Times

Everyone has encountered those moments when they desperately want to comfort or encourage another individual only to find themselves at a loss for words or blurting out something that unintentionally hurts. 

Please check out the teaser below and follow the link to read this informative article that might just cure your foot in mouth disease! 

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When Susan had breast cancer , we heard a lot of lame remarks, but our favorite came from one of Susan’s colleagues. She wanted, she needed, to visit Susan after the surgery, but Susan didn’t feel like having visitors, and she said so. Her colleague’s response? “This isn’t just about you.”

Source: How not to say the wrong thing – LA Times

 
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Posted by on February 9, 2017 in Chronic Illness, Grief

 

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How to Discourage a Suffering Friend » Vaneetha Rendall

The holidays are upon us and we will soon be interacting with friends, family and acquaintances that we don’t see on a regular basis. As a result, you may find yourself visiting with a suffering friend or family member–wanting to be supportive and encouraging but not really sure how to go about it. There are some common phrases we’ve all used, but they aren’t always received in the way we intend them to be. Therefore, it’s probably more important to know what not to say and why.

I encourage you to read this article by Vaneetha Rendall. The information is worthwhile anytime, but it might make your holidays more enjoyable for everyone if you read it in advance of the typical get togethers common this time of year.

Below is a teaser and a link for the article. I hope you will take the time to follow the link and read this informative article – for yourself, and for the suffering people you love.

“What’s the best way to discourage a suffering friend?

I can tell you what I’ve done.

I’ve told suffering friends about how other people are going through more painful trials. I’ve given examples of how brave, godly and optimistic these other people are. I’ve freely doled out advice, even mini-sermons, about how their horrible situations will turn out for the best. . .”

Source: How to Discourage a Suffering Friend » Vaneetha Rendall

 
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Posted by on November 21, 2016 in Adversity, Chronic Illness, Faith, Grief

 

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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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Rest Ministries – Needing & Accepting Help

Please follow the link below entitled “view original post” (in red) and read the article originally posted on restministries.com. You don’t have to suffer from a chronic illness or disability to gain something useful from this post. The truth is, we all need help at some point in time.

Today, I met with a Benefits Protection & Planning Representative for the state of Arkansas. Dealing with SSI and Medicaid is both humbling, anxiety inducing and confusing. I am so thankful for Jerry Clawson who is committed to helping me safely navigate the complexities of available services. Making the wrong choice can cause your child to loose much needed medical benefits or financial assistance for adaptive equipment, among other things.

Jerry may simply be doing his job, but he doesn’t perform it that way. He’s been incredibly responsive and understanding. Today, he allowed me to stop by without an appointment. He didn’t have to do that, but I’m so thankful and glad he did because my PTSD, depression and anxiety issues leave me struggling to do the simplest of tasks. I simply can’t make myself place phone calls and schedule appointments. It’s easiest for me if I can make must needed stops after I’ve already been required to leave the house for some reason. And that’s what happened today. I called Jerry and he made himself available. I’m sure it wasn’t a big deal for him, but it was huge for me.

I’ve had the signed documentation ready for him for approximately a month and I knew if I didn’t meet with him today, it could be quite some time before I managed to make myself try again. I don’t understand the psychology behind my issues, and I’m extremely embarrassed by the fact that simple tasks have grown monumental to me, but, I can’t simply make up my mind to do things and get it done. Instead, I’m trying to work with what I am able to do and hope the rest will resolve itself in the near future.

Last summer I attended College Bound Arkansas with my daughter, Gracen. It’s a program that prepares kids with disabilities for the transition to college. I met numerous parents during the course of our stay and discovered that they are all struggling to find services for their children. It’s a prime example of the blind leading the blind. We don’t know what resources are available, who to ask, or how to find them and generally happen upon them by chance via a conversation with another parent, a specialist or a physical or occupational therapist. If you do find someone that can point you toward available services you are often handed an extensive list of providers and have to wade through the entire thing to find out exactly what services your child might qualify for. It’s overwhelming and frankly, parents (not just me)  get so confused, they simply quit and soldier on alone.

In the aftermath of the car collision that killed two of my daughters and left Gracen badly injured at a time when my husband was between jobs, we found ourselves needing to accept help in ways we’ve never needed to in the past. David and I were overwhelmed with gratitude and yet found ourselves uncomfortable to be on the receiving end of the equation in spite of our desperate needs. This is what the author of this blogpost, Shelly Hendricks had to say on the topic:

“We all want to give help. We want to be the answer to prayer. It makes us feel weak to accept help. It makes us feel hopeless to ask for it.

And yet, God has been convicting me.

Receiving is not passive.

Receiving is submitting. Accepting is playing an important part. Asking is admitting that you are just like the ones you’ve helped before. . . and will again, in small and big ways.”

 

See what else Shelly has to offer below.

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http://restministries.com/2014/08/difficult-need-accept-help/

Needing help is definitely humbling and yet it’s greatest blessing is the opening of spiritual eyes to see the nail scarred hands that prompted those around you to meet needs, and extend kindness and comfort that reaches far beyond the gift offered or act of service rendered. Brings to mind Psalm 8:4, “What is man, that thou art mindful of him? and the son of man, that thou visitest him?” Beyond all human comprehension somehow His response has been a sincere and quiet, “Mine. The apple of My eye.”

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Posted by on February 19, 2016 in Chronic Illness, Uncategorized

 

Insights on Suicide

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Last October I came across this article (highlighted in red below) on the suicide of Patti Stevens by Rudolph Bush on the Opinion Page of The Dallas Morning News:

No, Patti Stevens wasn’t selfish. She was hurt.

As a member of the bereaved parent’s group, While We’re Waiting, I’ve encountered several parents of children who’ve committed suicide.  It’s heartbreaking!  It’s disturbing to read of children as young as 11 years of age, taking their own lives.  I can only imagine the agony, the second guessing and the questions the grief stricken families are left struggling with.  The impact on the entire family when a child dies (regardless of the means of death) is staggering (but that’s an article for another day).

Journalist, Rudolph Bush covered this topic well and he certainly got it right when he said of Patti Stevens, “She was trying, in a desperate, mistaken, terrible way, to stop hurting.” Bush’s comments were made in response to critics who contend that those who commit suicide are selfish. I also appreciate that he points out, “. . . the suicidal have fallen into a place where their sadness, fear and desperation have stripped away the ability to think and act rationally.”

Still, I think it’s a serious mistake when we assume, “Things would have gotten better.” That was probably true for Patti Stevens and a multitude of others who contemplate suicide, but it’s certainly not true in every situation which is why organizations such as Death with Dignity exist. It’s why assisted suicide is a hot button issue of our day. Don’t get me wrong, I am not a proponent of suicide at all, but we are naive if we fail to recognize that, in some situations, things will get worse.**  Families coping with terminal illness, with addiction, and a number of other issues know, without doubt, that their circumstances will indeed get worse.  They know more pain is on the horizon and they are afraid and desperately want to escape the pending heartbreak. When it’s true that things will get worse, we have to find a way to help people cope with that truth; to find purpose and meaning in life.

We’ve all heard the popular phrase, “everything happens for a reason” at some point in time; usually when something unpleasant transpires. Tim Lawrence wrote an article on that very topic. Mr. Lawrence used his article to strike out against the culturally common advice passed to people coping with trauma and grief – advice he refers to as “the debasing of the grieving”.  In the piece published on his blog entitled, “The Adversity Within”, he shares this quote from Megan Devine, “Some things in life cannot be fixed. They can only be carried.” Of Ms. Devine’s quote he says,

“These words are so poignant because they aim right at the pathetic platitudes our culture has come to embody on a increasingly hopeless level. Losing a child cannot be fixed. Being diagnosed with a debilitating illness cannot be fixed. . . They can only be carried.”

We live in a culture that demands positivity. Obstacles are opportunities in disguise.  If we can’t go around said obstacle, we must find a way over, through or under it.  Nothing is impossible.  We will overcome. We will conquer; by sheer force of will if necessary. And the underlying message is that, should we fail, we are incompetent or didn’t try hard enough.

img_0428We’ve been indoctrinated with the message that we must be able to turn every negative into a positive. Our culture as a whole no longer helps people work through their grief, instead we demand that they set it aside, suppress it, or spin it into an uplifting message – all the better if they can tie it up with a Biblical bow. As a result, we leave hurting people enmeshed in an internal battle pitting their normal need to express and work through their pain and sorrow against societies demand to find the silver lining and move forward.

If we sincerely want to reduce the suicide rate, we all have to learn to become comfortable with the bad and ugly aspects of life instead of pretending they don’t exist or glossing over them. We need to learn to acknowledge pain, validate feelings, and affirm the broken before they lose the ability to think and act rationally. In my experience, people want to be seen, to be understood and to feel as if they are not alone when their days turn dark. People can survive almost anything – they can learn to carry that which cannot be fixed – if we provide them with those things.

** The comments in this post in no way serve as permission to take one’s own life.

SuicidePrevention

 

 

 

Print a copy of this National Suicide Prevention Lifeline image and stick it on your refrigerator.

It may save the life of someone you love.

 

 
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Posted by on February 16, 2016 in Adversity, Chronic Illness, Grief, Links, Uncategorized

 

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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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