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If it walks like a duck . . . 

 

duckwaddle2June or July or somewhere around there—the first person went where angels fear to tread and recommended that I find a new perspective regarding my circumstances. It was a subtle message, but I grasped it right off. At the time I remember thinking, “Am I behaving in such a way that others feel the need to give me the positive thinking message?” The mere suggestion made me doubt myself.

Frankly, I thought I was doing pretty well considering I’d just buried two children and had been learning to care for my disabled daughter in new and challenging ways.

David, Gracen and I laughed a lot the first year. We developed a sarcastic and dark sense of humor and released our grief through laughter more than tears. But apparently, I did not appear joyful, which I’m guessing, outwardly looks like happiness. I wasn’t wearing the Christian mask of perfection. It didn’t take long for me to learn that it’s not okay to be real in the expression of my emotions and struggles. It’s not okay for others to be uncomfortable because of my sorrow. It’s not okay to grieve after a certain point in time.

The funny thing is, everyone has a different idea of when that point in time officially starts. At least one person determined that six or seven months was adequate. Most people generously grant you a year. After that, well, you’re not really grieving—you’re just throwing the biggest pity party known to man.

These days, if I can get out of the house, I am no longer walking in the grief-cloud. I can follow a conversation (better)—maybe even remember details important to others. I can laugh and smile and my life’s circumstances are no longer in the forefront of my mind.

No, they’ve moved to the back of my mind.

Always present.

Always lingering and lurking and awaiting a trigger so that they can move back to the forefront once again.

I can’t explain how it happened but at some point being a disciple of Christ was not a role I played here or there; it became ingrained in my very being. The same thing happened when I became a mother. Doing motherly things wasn’t always in the forefront of my mind, but being a mother became a part of me I was constantly cognizant of.

Furthermore, the role of a special needs mother became a larger and larger part of my identity as ARSACS progressed in Gracen and Katie’s bodies. Every activity had to be filtered through how it would, could, or could not be accomplished. From homework to PE, sleepovers and simple accessibility considerations.

Everything!

The point came where Gracen needed all her everyday clothing in the top two rows of her dresser because she could no longer bend over to remove things from the lower drawers without losing her balance. So when I say everything, I’m not exaggerating a whole lot. I guess watching tv itself hasn’t changed, but getting seated on the sofa to watch tv has.

Christianity, motherhood, special needs parenting all became a part of my identity. The same thing has taken place since the deaths of three of my four children. Bereaved parent has joined the ranks of my personal identity.

Maybe you don’t see me that way but if someone asked who I was, how would you describe me to another? By outside identifiers; my height, weight and hair color—then you add in the other things commonly known about me or any other individual.

ladysnakecharmerIn Christian circles, you wouldn’t identify me by my faith unless there was something very unique about it. “She’s the woman that worships with snakes.” I guarantee you, if anyone in my church family included snakes as part of their normal worship activities everyone would know who that individual was, if not by name or sight, then by reputation.

astonmartincarWe all have a reputation. Some good, some bad, most a mix of both. The lady who drives the Aston Martin would certainly be known in most communities. And we all have things that make up our identity. Very few disabled people don’t recognize their disability as part of their identity, but it’s a defining characteristic of that person. Just like being an athlete or scholar, doctor, or maid becomes not only how others identify them but how they identify themselves.

Bereaved parent is a role that’s identified me for almost a quarter of a century now. But three years ago it became a much bigger part of who I am. Being a special needs mom has been part of my identity for twenty years, but in the last five and particularly the last three it’s become a much bigger part of my identity.

If you were describing me to a group of people in my church, I doubt others would begin with the fact that I’m married to David, that I’m a stay at home mom. Most people would skip right over the physical descriptors and start right in with, “She’s the woman with the daughter in a wheelchair”, or “She’s the woman whose two daughters died in that car accident. You know—the one that happened the day after Christmas.” And any church member whose been there more than three years would likely know exactly who I am. People want me to move past my grief yet it’s the very thing they use to describe me to others.

We are what we do or what happens to us as much as we are our appearance. If you describe someone among a group of Christians as being unsaved, it’s likely that you might be able to identify that person by their outward appearance, the things they say and how they behave and treat others. If not, the Christians among you are probably not the best representatives of Christ.

bbirdoneoftheseThe point I’m trying to make is that you should expect behavior that correlates with the descriptors you use to define someone. The unsaved among the saved may be dressed less modestly. Their speech may be liberally sprinkled with expletives. You might see them drinking to intoxication, or find them bragging about things they’ve said or done that are not common among believers. oneofthesebbirdUnless you are dealing with an abnormally moral individual there should be recognizable differences between the lost and the saved. You expect them to fit the Sesame Street standard—you know—one of these things is not like the other. That’s the Sesame Street Standard.

So please, if you are going to identify me as a special needs mother or a bereaved parent, please expect me to look and act like one. It shouldn’t always be outwardly evident in my appearance and in many ways (after the first few years) it may not be as behaviorally evident, but I will always be a special needs mom. I will always be a bereaved parent. In many ways, I’m unique because of those aspects of my identity. But when I hear the move on message; I hear that somehow I’m not supposed to look or act like the individual you’ve identified me to be. There will always be some evidence of my identity. 

Always.

I may cry at unexpected moments, flee a meeting, avoid a wedding, miss church but I may also be the individual in the group who always notices the elderly adult that needs help with a door or carrying a drink. I may be more aware of the child left behind or flat out ostracized. I may be the woman known for validating the feelings of others. The one who can hear the good, bad and ugly and still see the heart beneath. I may visit people in the hospital that I don’t know. I may encourage the broken, answer faith questions for the doubter or burst out in anger at the mistreatment of another.

Expect me to be who I am, please! And if I surprise you, woohoo, that says a lot about my progress in healing. But if I don’t; judgment, criticism, accusations of self-pity, gossip, disguised as prayer requests or not, are not welcome. I’m not justifying sinful actions, just the normal emotions and temptations we all face.

babyduckwaddle2I am who I am.

I am who God created me to be.

I am who He knew I’d be.

He’s no more disappointed in me than He is in you.

Hear me as I whisper words of another’s hard-earned wisdom . . .

Let it be!

Waddle, waddle…

 
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Posted by on January 12, 2017 in Faith, Grief, Muscular Dystrophy

 

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Laughing at my Nightmare

12088497_994403817288205_1193078907032096104_n
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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Laughing at my Nightmare

12088497_994403817288205_1193078907032096104_n
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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Everyone Has a Different Normal

 

CTTheader

For TEAM Teen Gracen Boxx, “Everyone has a different normal”
Date: Saturday, April 25, 2015 at 6:03PM

ggirl When Gracen Boxx was 16 years old, her parents sat down with her for a serious talk. With a spirit of openness, she accepted the news her parents shared with seeming ease. They told her that she had been diagnosed with a degenerative genetic condition called Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS). Among other things, this meant that she would one day need a wheelchair and that her speech challenges would intensify. Learning of her diagnosis simply confirmed what Gracen already knew in her heart. Her physical challenges would not get any easier.

Gracen understands what it means to have a degenerative condition because she has courageously lived it throughout her entire childhood. Gracen’s mom, Janet Boxx, shares, “I imagine most kids with progressive diseases struggle to accept the way their bodies disappoint them and Gracen was and is no different.” In Gracen’s words, “Having a skill and then losing it is like losing a part of yourself.” The idea of losing independence because of diminished skills is a very distant horizon that most young people cannot fathom. For Gracen, this distant horizon has become an ever-present landscape in her daily life. Gracen’s vulnerability in this landscape became even clearer when Gracen and her family were in a tragic car accident in December 2013. Gracen sustained physical injuries, but far more devastating was the loss of her two sisters in the accident.

Even though Gracen knew that her ability to walk would diminish because of ARSACS, she never anticipated that a car accident would require her to use a wheelchair while still in high school. This reality intensified her commitment to working hard in therapy. Gracen’s immense compassion and understanding of the obstacles some children face make her visits to Children’s Therapy TEAM a highlight of her week. She feels a strong connection with children confronting significant daily challenges. For Gracen, “Everyone has a different normal.” Time has not dulled the ache of missing her sisters, but such feelings have become more normal. Her challenges with ARSACS have become normal. Even her experiences with the pain of frequent migraines have become normal. She carries on. Therapy has enabled Gracen “to maintain what I have for as long as possible.” With so much beyond her control, Gracen’s ability to choose to work hard provides hope, even when life’s challenges seem unsurmountable.

 
 

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