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Category Archives: Chronic Illness

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.

Boxx Banter

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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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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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Graceful Gratitude

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

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

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

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

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

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

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

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

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

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

 

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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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A Letter to the Friend of a ‘New Normal’ Grieving Mother

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JULY 1, 2015 BY NATHALIE HIMMELRICH
http://stillstandingmag.com/2015/07/letter-friend-grieving-mother/

This article (Click on link in red above) is well worth the read for those who wish to understand the heart and mind of a grieving mother. It is definitely a struggle to merge the pre-loss woman I was with the post-loss woman I am and will always be, in spite of the fact that I’ve been down this road before.

I could have written most of this article myself. The one unmentioned battle is that of your faith and your reality. I fear my last post offended some of my Christian friends – the “choose joy” comment and “it’s ok, God’s in control” reference in particular.

I want people to understand there is a difference between joy and happiness and that the Bible tells me there is a season for everything, even grief. I’m not choosing to be unhappy, I am, however, grieving and that process may take longer than even I would like it to. And I too fully believe that God is in control but during this time of grieving it’s not particularly comforting because He was and always has been in control even when my son died within my womb and my daughters died at the side of the road and when two of my children were diagnosed with a progressive neuromuscular disease. None of those things have been or will ever be OK with me in this present world even if they are OK from an eternal perspective.

I am by far my own worst critic expecting some supernatural ability to cope with my changing reality as the perfect Christian would but I am also far more human than holy so forgive me if in my grief I have disappointed or hurt anyone as I struggle my way through all of this.

At this point in time I relate far better to Job’s lamenting his very birth than I do to the proverbs 31 woman who has no fear of the future and while I make recognize that I can count it all joy during this struggle because of the rewards that will later spring forth, I’m too tired to make the effort right now.

(Facebook Post 7/1/15)

 

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