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Tag Archives: Muscular Dystrophy

A Day of Hope

Gracen and Hope (left to right)

Gracen’s third semester at John Brown University brought her a brand new roommate. That is when Hope (and I mean that in more ways than one) literally entered our lives. Hope is a confident, lively, opinionated, fierce and determined little thing. In a word, she’s a spitfire!

Gracen and Hope compliment each other. Gracen helps Hope keep track of things and Hope gets Gracen out in the world. But what makes Hope unique among Gracen’s friends, family and acquaintances is one singular thing. She is disabled – or uniquely-abled – as I prefer to think of it.

Gracen was born with a genetic disease known as ARSACS – a progressive neuromuscular condition which is a rare form of Muscular Dystrophy. She has been wheelchair bound for the last three years as a result of injuries sustained in a car accident and the progression of her disease. 

Hope was born with Cerebral Palsy, a condition that generally occurs as a result of birth trauma. She gets around aided by two cuff canes and/or a scooter. Let me tell you, that girl can move! It’s absolutely shocking how quickly she gets from place to place with those canes.

Parents of special needs children worry about a great many things. Big things, small things and downright crazy things. That old saying that encourages people to major on the majors is really not applicable in a lot of special needs homes. That’s because things that are minor for average people are anything but for the uniquely-abled. Molehills are mountains and life demands the constant awareness of your environment or other impediments encountered in the outside world, from accessibility to socialization and adaptability. 

From the time Gracen’s disease became apparent, I have been responsible for paving the way through and around the things that hinder her progress. But there are some things a mother cannot do for their child; uniquely-abled or not. The list just seems to be longer for Special Needs Moms. Among the things I’m incapable of providing for my daughter, friendship ranks high on the list.

As a mom, I can provide opportunities for Gracen to connect with others, but I can’t make real friendships develop. Over the years I have watched from the sidelines as Gracen (and her younger sister, Katie, before her death) navigated through the quagmire of social situations. 

I’ve seen her overlooked, ridiculed behind her back (sadly by adults in some cases) and marginalized. It’s not something we openly talk about, but Gracen isn’t mentally disabled. She’s not unaware of what goes on around her nor of the motives of others.

Nobody puts Baby in a corner! ~ Dirty Dancing

Through the years, Gracen has surprised me in innumerable ways. I have watched her insert herself into activities and conversations repeatedly. There’s a line in the movie Dirty Dancing that describes Gracen well. 

If you remember the movie at all, Baby is the youngest of two daughters. The family dynamics portrayed in this film show Baby to be sidelined by the (perceived) superior talents and beauty of her older sister. Baby’s the afterthought. She resides in the shadows, or on the periphery of family interactions. Johnny, the resident bad boy recognizes this reality. And at the end of the movie, in the triumphant moment, Johnny says, “Nobody puts Baby in the corner!” just before sweeping her onto the dance floor and publicly showcasing her talent.

That line, “Nobody puts Baby in the corner!”, describes Gracen to a ‘T’. The only difference being that Gracen doesn’t need someone to stand up for her. She has routinely refused to be overlooked. She refuses to be relegated to the corner. I don’t think I’ve ever attended a Parent-Teacher conference where a teacher hasn’t been surprised by her outspoken class participation. I’ve seen her insert herself among her cousins at family gatherings, her peers at church and in innumerable other situations.

I really don’t think this demand for acknowledgement is a personality trait so much as it’s a subconscious response to the way society as a whole treats the disabled. It’s as if she is silently telling others that they don’t have to like her, but they will not ignore her. Hope confronts the world in the same way. Still there’s a vast difference between being acknowledged and being befriended.

In the world we live in people have all kinds of motives for the ways they interact with others. Sometimes inspired by simple curtesy, shared interests or as a ministry project. Sometimes motivated by what another can do for them. Social interaction is a complicated and messy endeavor.

However, Hope and Gracen cannot be found silently sitting on the sidelines, enabling others to pridefully pat themselves on their backs for their inclusive character or acts of service for the Lord. No, Hope and Gracen can be found at a prominent table in the center of the room living large with strong opinions and copious amounts of sassy sarcasm – holding their own and dismissing those who see them as less than others. 

And you know what? Hope and Gracen gladly invite you to their table because they have something of value to offer others, not because they have any need of help themselves. They don’t need the benevolent kindness of others (when it’s motivated by nothing more than thinly disguised pity) in lieu of true friendship.

The bottom line, of course, is that we all want to be liked and appreciated for who we are underneath all the subterfuge of human interaction. We all desire to be understood and wanted, warts and all.

Hope is her name, but it is also the gift she bestows upon Gracen and others who have found themselves living outside the norms of society. She serves as a reminder to others that their lives hold purpose and contribute to the world at large. 

Hope is not the girl who goes silently into the night. Hope sweeps in like a hurricane, disrupting and reordering the people around her. She doesn’t leave a trail of destruction behind her; but she does leave others with the awareness that she is a person, not a project. 

In Hope, Gracen found the first person who understands her from an experiential perspective. And that’s huge. 

Indescribably Huge!


They have shared attitudes, feelings and frustrations. They look at the world though a lens others cannot fathom, let alone comprehend. 

We all have a room in our hearts I refer to as the Ugly Closet. It’s the place where we hide all the feelings deemed unacceptable by society when everything within us cries out that those feelings are both reasonable and justified. When someone comes along and echoes those hurtful thoughts and feelings that door gets flung open in immediate and overwhelming relief. 

It looks a bit like that famous scene from When Harry Met Sally*, when Meg Ryan demonstrates a woman faking an orgasm in the middle of a diner (minus all the moaning and head tossing). She slaps her hand on the table emphatically shouting, “yes, Yes, YES!” in a comical portrayal of physical release. But I’ve seen that exact response (I mean the table slapping and shouting) when an individual completes the sentence, I feel like . . . the same way another would, “Oh my goodness (Slap), yes, Yes, YES (Slap)! That’s exactly how I feel (SLAP)!

That was the first gift of Hope.


“Yes, Yes, YES! (Slap)! Oh my goodness (Slap), yes, Yes, YES (Slap)! That’s exactly how I feel (SLAP)!

And those words, that sentiment, has echoed repeatedly through the air every time Hope and Gracen spend time together. Hope carries true friendship with her every time she powers her way through the front door. (She doesn’t really walk – she’s too much of a force of nature to do something so mundane).   

That’s why, anytime Hope comes to visit . . . 

I refer to it as a day of Hope.

*Okay, the When Harry Met Sally scene is not the best example (it’s kind of tacky), but I seriously couldn’t find another where the hand slapping and yes, yes, yeses were so emphatic, and that’s the image I want to leave you with, because it happens just like that.

 
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Posted by on September 11, 2017 in Adversity, Muscular Dystrophy

 

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Daily Battle – Daveboxx.com

I’m far more verbal than my husband, David. Should you meet him you will find that he has a dry wit, an interest in politics (shudder), and for some strange reason knows someone everywhere we go. His current boss picked up on that last fact one day when they were out and about on some job related task and turned to him and said, “Are you the Mayor or something?” She now refers to him as “The Mayor”. He has also been dubbed the “Dos Equis Man” based upon the “Most Interesting Man in the World” ad campaign for the Mexican beer brand. (That moniker is my personal favorite). 

In public David blends in until one-liners and witticisms pop out and others take note. He is known for his sense of humor and fun and he’s well-liked for that reason among others. Aside from his interest in politics you might think he’s just an easy going guy who floats merrily through life not taking a whole lot seriously along the way. 

Yet, unbeknownst to most, even close friends and family, he is surprisingly deep. It’s rare that one gets a glimpse of the man beneath the still waters, but on occasion he makes an appearance and the quiet man of faith is revealed. At heart, David is a servant leader. He loiters in the periphery as those with more gregarious personalities and outspoken tendencies take center stage.  The depths of his faith are vastly underestimated and definitely under appreciated. He’s unobtrusive, ministering in quiet corners and as a result his thoughts and opinions are not frequently requested. 

In the last couple of years we have gathered with two other couples for weekend getaways. We catch up and laugh and at some point settle in for a discussion of real life issues seeking solutions and encouragement from a spiritual perspective. That focus on the spiritual perspective is what makes those conversions unique because everyone involved has somehow had their world shaped by a need for faith. 

We are, by unspoken agreement, searching for more than worldly advice and solutions to the challenges of our lives. David is an active listener for the most part. I have this memory of David doing dishes and quietly talking with one of the other wives following one such conversation. This is the setting in which David is most likely to surprise another with unexpected insight.

However, every once in a blue moon, David just puts it out there. Clink on the link below to see one such example:

Daily Battle

Daily Battle was originally published on 6/22/16, one day after the 24th anniversary of the day our son, Cole, was stillborn. And David’s words . . . they are Cole’s legacy.

 
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Posted by on June 23, 2017 in Faith

 

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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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A Life Deeply Mourned & Celebrated*

Stillbirths: How a New Openness Helps Parents Cope is an insightful article originally published in Newsweek Magazine January 30, 2009. Click on the link above to read the article. It reflects a much needed and long awaited trend toward ending the silence surrounding stillbirth. In fact, in recent years the term ‘stillborn’ has been replaced with ‘born still’. It’s a small but significant change as it demands acknowledgement of the existence and value of the deceased child.

The article is more than facts and statistics. It includes personal stories and introduces an organization dedicated to helping hurting families hold onto the children who have left their arms but not their hearts.

Never their hearts.

How I wish Now I Lay Me Down to Sleep existed in 1992. I’m so thankful it is available to families today. In 1992 David and I were encouraged to hold our newborn son and I’m glad I did. You just always wish for more. . . to know the color of their eyes, the sound of their voice, the feel of their tiny hand wrapped around your finger, wiggling toes . . . memories to hold onto.

Anticipation is making me wait for that moment promised in 1 Corinthians 13:12:

“For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.”

When Cole was born, by all accounts healthy, just weeks before his due date; there weren’t many support groups available specifically for bereaved parents of infants. Fortunately, that is no longer the case**. The books on the market focused on miscarriage, a worthy subject and a far more common form of child loss, barely gave a nod to the subject of stillbirth.

I was rocked by the fact that my son was healthy . . . but dead. Healthy and dead. The two are simply incompatible; yet it was true. It never dawned on me when I prayed for a healthy baby that I needed to pray for a living, breathing baby at the same time. I never made that mistake again; I assure you.

I felt very much alone.

Those who had previously experienced early miscarriage expected me to quickly move past my grief. Nobody wanted to talk about my son. It felt as if people wanted me to pretend the previous nine months had never happened. And of course the obligatory comments designed to offer hope and comfort were extended. “You can have another baby.”, “This was God’s way of taking care of an unhealthy child.” I wonder if those who offered that last bit of wisdom recognize the irony of it in light of the fact that I later gave birth to two children with a rare form of Muscular Dystrophy? I doubt it. They probably don’t remember saying those words, although I certainly recall hearing them. That’s not meant to be snarky. For some it’s better if they don’t remember; their intention was good. For others, remembering may help them recognize it is untrue and better left unspoken.

Stillborn The Invisible Death was the only resource I found dedicated solely to the topic of stillbirth. It was a painful and cathartic read for me. I’d pick it up and read until my heart hurt so badly I had to cast it aside. But it kept drawing me back. It was one of the few places I heard the barest whisper of, “Yes, that’s it. That’s how I feel!” It was heartrending. It was validating and affirming. My experiences with friends & family, emotions, and subsequent pregnancies were clear reflections of those portrayed in the book. I was not nearly as alone as I felt. I wasn’t crazy, paranoid, or ultra-sensitive. I was very, very normal.

The book is a compilation of survey responses by bereaved parents. But this editorial review found in Library Journal gives a far better description of the book than I can relate 24 years after the fact:

“According to the National Center for Health Statistics, 33,000 babies are stillborn each year. For the parents who experience this traumatic event, and for familes, friends, and professionals, this book offers understanding, hope, and comfort. Drawing on the moving and eloquent testimony of 350 parents of stillborn babies, it explores such topics as blame, shock, and guilt; seeing, holding, and remembering the baby; the autopsy and funeral; effects on family relationships, including moving and divorce; thoughts of suicide; increased substance abuse; surviving children and subsequent pregnancies; returning to normal; and reaching out to others. An empathic and compassionate book that would have been enhanced by a list of support groups and resource organizations.Nevertheless recommended. Jodith Janes, University Hospitals of Cleveland Lib.”

These many years later, I’d still recommend this book to bereaved parents who’ve experienced the birth of a stillborn child.

Seriously, follow the link above and read the Newsweek article. You never know when stillbirth might touch your life or that of someone you love. You never know when you might be called upon to minister to, or encourage, an individual or family living in the deepest, darkest grief following the ninth hour loss of the child they’ve dreamed of and prepared for. You never know . . . maybe you should.

 

*Newsweek article paraphrase

**A multitude of support groups (both online and face to face) can be found via internet search. I’m partial to While We’re Waiting, an organization dedicated to ministering to bereaved parents. Please see whilewerewaiting.org to find out about the free services offered to grieving parents.

 
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Posted by on September 26, 2016 in Grief, Muscular Dystrophy

 

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Questions I Ask & Thoughts I Ponder

The Apostle Paul said in Philippians 1:21,

“For me, to live is Christ and to die is gain.”

I can in no way claim to be anything like the Apostle Paul, but I can relate to his statement – if not in whole, then in part.

For me, to live is to care for Gracen, and I desperately want to be there for Gracen, but to die . . . to die is gain.

In our day and age, no one wants to hear that sentiment expressed. Maybe it makes people fearful that I might harm myself, but I wonder if maybe it is more about an individual’s fear that at some point in their life, they might find they desire death over life.

I have an eternal hope.

Death is not something I personally fear.

And neither did the Apostle Paul.

And if . . . if God’s purpose for the latter part of my life is to care for Gracen . . . if that is my ministry and service for Christ, then am I not, in effect saying just as the Apostle Paul did, “For me, to live is Christ and to die is gain”?

Is it spiritual to laud his statement and rebuke mine?

If we as Christians are to be Heavenly minded, is it wrong to long for our eternal home?

Is it wrong to desire Heaven more than we desire this temporary world we currently reside in?

Do we unconsciously believe Paul’s ministry, the ministry of evangelism, is the pursuit of Christ and His desires, whereas ministry to the members of our family or the sick really doesn’t equate to living for Christ?

img_1412-1Is that why my longing for my eternal home is met with admonitions that I must have hope? That it is wrong for me to desire the rapture in order to escape these earthly sorrows?

Is that really wrong?

Does my motivation somehow make my desire impure?

Does God care why I desire Heaven or just that I do?

Does not a longing for my eternal home reflect the deepest trust that I, in fact, have an eternal home waiting for me?

Does it not reflect true faith?

And should I lose it all—should I lose both David & Gracen—what, if anything, would be capable of anchoring my broken heart to this earthly prison?

I know what the answer to that last question should be. I certainly don’t need anyone to educate me with the “correct” response. But what “should be” and “what is” are often two different things. I know that my mind and my emotions will not agree if my worst fears are realized. I know they won’t. They don’t now.

These are questions I ask myself.

Maybe that last question is the reason people so adamantly attempt to cram the necessity of hope down my throat.

Maybe that’s their secret fear too.

Maybe no one knows what would hold enough sway in their individual lives to anchor their souls to this world if they lost everything they value most in this world.

Maybe—God help us all—maybe there is nothing strong enough to do that for any of us.

img_1416Maybe that’s where the Holy Spirit steps in and performs a supernatural work in our hearts that enables us to receive God’s all sufficient grace instead of rejecting it in our agony . . . instead of taking action outside of the will of God due to complete despair and utter desperation.

These are thoughts I ponder.

I’d love to know how you answer these questions—if you think these same thoughts.

 
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Posted by on September 10, 2016 in Faith

 

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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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