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Monthly Archives: February 2017

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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Just Because . . .

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Bethany Joy Boxx 11/02/93 – 12/26/13

 

 

I recently saw a number of posts on a closed bereaved parent’s Facebook page that began with those two simple words, “Just because”. A picture or a series of pictures would be posted along with a short synopsis of the child’s life and personality.

It’s a roll call of sorts.

And it’s beautiful.

Why?

Because . . .

 

 

Bereaved parents lose the opportunity to post new pictures and brag upon challenges met, goals accomplished, and the hand of God at work in the lives of their deceased children.

The world demands bereaved parents forget, let go, or move forward but our dead children are just as much a part of our present reality in their absence as our surviving children are. Their absence is a tangible presence in our homes just like the college student living in a dorm room or a married child making their own home. The only difference is intense sorrow knowing they will never walk through your door again instead of the peace of mind that comes from knowing that your child is alive and well.

The absence of a child shapes family members just like the presence of a child does.

So, I am extending the offer to the bereaved to post a picture and tell the story of your loved one, be it a parent, child, sibling, friend or mentor. For grief is love bestowed upon an absent recipient and we are told, “They will know we are Christians by our love.”

We, Believers, claim every life is worthy—sacred—be it the born or unborn. Should not we value just as highly the deceased as we do the living?

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Katelyn Marie Boxx 10/19/97 – 12/26/13

Just because . . .

Every life . . .

Anticipated,

Longed for,

Unwanted,

Unappreciated,

Born,

Unborn,

Living,

and . . .

Deceased. . .

Carries an eternal legacy.

So post a picture (as a Facebook comment wherever this post is shared since I haven’t figured out how to add a picture to WordPress post comments), celebrate a life, demonstrate your unending love, respect, and devotion

just because . . .

Every

Single

Solitary

Life

Matters. . .

To God, the creator of life, and to the grief-stricken loved ones left behind.

We were created for eternity more than we were created for this world. The legacy left lives on. Death is not the final chapter—it’s the introduction—the prologue to a loved one’s living legacy. That legacy is an epic novel and it’s only just begun!

 
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Posted by on February 25, 2017 in Grief

 

If 2013 Broke Your Heart… | Urban Hallelujah

Sometimes it feels like all we will ever know is the refiner’s fire. I am no Biblical scholar, but in rare moments I have wondered if the people who suffer the most trials and tribulations on this earth are paradoxically the most blessed of all people, because as the blogpost below points out, our burdens, trials, tribulations and just plain sucky circumstances force us to either get bitter or to lean on the Lord. 

I’ve observed many Christians over the years (those that seem to encounter an unusual amount of hardships) repeatedly chose to lean on the Lord.  Somehow, I think people interpret that to mean that the circumstances become easier to deal with, but I don’t think that’s true at all. The lightening of the load comes from trusting there is a purpose, a plan and even on the days when that’s not enough (because there will be those days) you know deep in your soul that He is there and you are not alone. Alone in bad circumstances is profoundly worse than having the Holy Spirit within you in the midst of your bad situation. 

I am so grateful for the encouragment I’ve received from those who have done little more than trudge their way through problem after problem, trial after trial serving as a living Bible for me and others to read. Most were completely unaware that anyone was observing their faithful walk. My prayer is that you and I will have eyes to see the work of the Lord and ears to hear what He says to the church (for that is what we are collectively) so that when our time comes to walk through the fire we instinctively follow the example displayed before us in better days. 

He is doing a new thing, but sometimes, we, like the wilderness wandering Israelites want nothing more than to return to the old, the familiar, the comfortable existence we once complained about. The known is less frightening than the unknown new thing God has planned for us. It takes courage to move into our new reality. Courage to face the raging Red Sea. Courage to walk across the seabed blown dry by the breath of God who is holding back the towering wall of water on either side of us. The Christian life requires the courage to allow God to have His way and to follow along behind Him as He leads us to places we never wanted to venture. And God knows this. 

He knows!

That’s why he told Joshua repeatedly to be strong and very (yes, He used that word!) courageous. It takes far more strength and courage to surrender your efforts, let go of your plans, and take the hand that reaches back for us, securely leading us into the vast and frightening unknown, than it takes to strive to control the chaos around us through our own dogged determination. 

Faith and trust are the hallmarks of courage.

When you exercise your faith and trust in God, you are bravely courageous!

Please follow the link below because it doesn’t matter what year broke your heart – we all end up broken at some point.

 

We were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it… 2 Corinthians 1:8 Each Christmas, my husband and I search the city over, in pursui…

Source: If 2013 Broke Your Heart… | Urban Hallelujah

 
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Posted by on February 21, 2017 in Adversity, Faith, Links

 

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Hope for the Hurting

In the book of Lamentations, Jeremiah the prophet says . . .

21 This I recall to my mind, therefore have I hope. 22 It is of the Lord’s mercies that we are not consumed, because his compassions fail not. 23 They are new every morning: great is thy faithfulness. 24 The Lord is my portion, saith my soul; therefore will I hope in him. 25 The Lord is good unto them that wait for him, to the soul that seeketh him. 26 It is good that a man should both hope and quietly wait for the salvation of the Lord.

32 But though he cause grief, yet will he have compassion according to the multitude of his mercies. 33 For he doth not afflict willingly nor grieve the children of men. ~ Lamentations 3:21-26, 32-33 (American Standard Version)

Please, please, please, don’t rush by verse 33! In fact, below are several different translations of this verse. Meditate upon it. We do not love and serve a cruel a God! We love and serve a righteous and loving God! Look for the nuance, the subtle differences in translations below: 

For he does not willingly bring affliction or grief to anyone. (NIV)
For he does not enjoy hurting people or causing them sorrow. (NLT)
For He does not enjoy bringing affliction or suffering on mankind. (HCSB)
For he does not deliberately hurt or grieve human beings. (ISV)
For he is not predisposed to bring affliction or suffering to the children of men. (NHEB)
For he does not afflict nor grieve the sons of men from his heart. (JB)
For he hath not willingly afflicted, nor cast off the children of men. (DRB)
For He hath not afflicted with His heart, Nor doth He grieve the sons of men.(YLT)

These translations speak to the character and integrity of God Almighty. They are in direct contradiction to the allegations leveled against God and His Word in the world today. 

God is not predisposed to willingly, or deliberately, hurt human beings. He does not enjoy bringing affliction, sorrow, pain or suffering to mankind. Neither does He cause grief nor cast off anyone from a heart filled with evil or cruelty.

Understanding those truths are so important to the grieving because the why question always begs to be answered and rarely is. The very foundation of a Christian’s faith is built upon the character, integrity, and power of God. And that power, oh, it trips us up! Because God didn’t intervene—and He could have. He could have but He didn’t protect the body of the deceased. He allowed the incomprehensible—the inconsolable to happen. But as Paul Harvey famously requested day after day on his radio broadcast, tune in for the rest of the story.

Before you vilify God when death comes calling consider Isaiah 57:1-2 in the Amplified version,

The righteous man perishes [at the hand of evil], and no one takes it to heart;
Faithful and devout men are taken away, while no one understands
That the righteous person is taken away [to be spared] from disaster and evil.
He enters into peace [through death];
They rest in their beds (graves),
Each one who walked uprightly [following God’s will, living with integrity].

And while our hearts stubbornly refuse to be comforted, the truth remains—there is a measure of consolation in understanding that your loved one has been spared future disaster and evil. There is consolation in knowing they are at peace, that Heaven is their home and reunion awaits.

But . . .

Hear this well!

Heaven and reunion are far off concepts for the parents, siblings and other individuals with a close, personal relationship with the deceased following the funeral when living with loss becomes a daily journey through the valley of shadow of death. The heart wants what the heart wants and the heart wants their loved one resurrected now!

There is a time to lament—to mourn and in Biblical days sackcloth and ashes were an outward manifestation of the inward heart. Consolation and comforting thoughts can never completely mitigate the anguish of loss.

Messages and reminders of hope feel oddly hollow in the face of life-long separation from your loved one. However, messages that reinforce the inherent and incalculable worth of the deceased, the great depth of loss for the grieving, and acknowledge that their lives have been changed in significant ways forevermore are well received.

Don’t rush past the hurt to extend hope. The grieving need to fully process and struggle through their pain and consistent validation and affirmation are the best gifts you can bring to the bereaved.

I know, hope, hope, hope. We have to have hope! But while the bereaved believer may feel hopeless it’s not true. It’s not reality because hope lies within the believer. It’s not something we have to strive to generate. Hope resides inside the heart and soul because the Holy Spirit is always at work.

Be sensitive to the leading of the Holy Spirit. Let Him nudge you to remind the bereaved of future hope when the time is right. In the meantime, and by that I mean months, and depending upon the intimacy of the relationship, years—years—plural people!—the bereaved will be desperate to have the value of the deceased and the natural sorrow that follows validated.

When you rush to extend hope, when you try to point out the positive, you inadvertently dismiss the worth and importance of the one lost—and that is entirely unacceptable to the bereaved. And the general response in such circumstances is to dig in their heals and refuse to be consoled and frankly, struggle longer and deeper in their grief, as they feel offended and righteously justified in mourning the great depth of their loss.

Hope can be friend or foe.

Hope inspires anticipation and patience, but it also frequently results in disappointment.

The bereaved are already residing in the land of sadness and sorrow as their hopes have been crushed. And therefore, it can feel absolutely incomprehensible that anyone would encourage those living with deferred hope to invest their hurting hearts in more hope. In fact, I dare say, that the bereaved would enjoy playing whack-a-mole with hope. Great satisfaction would be derived from whacking the crap out of the mole of hope every time he dared stick his head above ground.

Three years have passed and my hopes these days are invested in eternal things. My hopes of Heaven and all it promises won’t be deferred, of that I’m convinced. But it’s taken me a long time to make peace with hope. After the funeral, in the long days of suffering after friends and family had returned to the normalcy of their intact lives, validation was more valuable to me than hope. That was true for a very long time. 

I’ve turned a corner. Thank God I’ve turned a corner in my grief, but it was a hard-fought and time intensive battle. Time may not heal but it does allow the Holy Spirit to perform His meticulous work in the heart of a bereaved believer. We must always yield the right of way to the Holy Spirit. God is the Great Physician. We merely serve as His hands and feet.

 
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Posted by on February 17, 2017 in Faith, Grief

 

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Love, Love, Love!

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

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

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

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

They were loved.

They had no doubt that they were loved.

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

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

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

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

 
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Posted by on February 13, 2017 in Faith, Grief

 

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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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Can Three Years Have Passed?

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

And one remained.

Just one.

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

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

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

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

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

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

until you are no more.

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

Believe me, that’s a victory.

 

 
18 Comments

Posted by on February 6, 2017 in Grief

 

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