DisABLEd

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Disabled!!!

       That is what he is labeled… Dis-ABLEd!

In all actuality, there are so many terms they call it: “special needs”, “handicapped”, “mental retardation”, “physically impaired”, and a few other contrite names. All are accurate in description. This rhetoric is suppose to make us feel better. In essence, it is used so as not to offend. We even define legal language around it to become politically correct. However, no matter the label used, no one person can be defined by one simple term. For example, to simply call me “a mother” would be to oversimplify me. It only describes one facet of who I am. The same can be said of my son. He is so much more than his condition.

I was “saddled with this burden” (a term used by those outside my life to describe what happened) at the age of twenty. Having never been around someone disabled before, I was ill prepared. This did not stop me from trying. I loved him wholeheartedly, and wasn’t going to let his imperphections change that.

He was born with a rare genetic syndrome called De Barsy Syndrome: Cutis-laxa type. It is a rare connective tissue disorder and affects his collagen and elastin fibers. Even now there are only approximately sixty known cases of this syndrome on the planet. Doctors told me it was autosomal recessive, meaning he got this gene from both parents. We discovered we had a 1 in 4 chance of passing on the malfunctioned gene with each pregnancy. In the delivery room, they told us he had failure to thrive. More than likely he wouldn’t make it past his first night.

Fourteen years later he is still here, and he is growing strong.

Many call him “my angel from heaven”. Others sigh, expressing their sympathy as if they felt sorry for the both of us. Not knowing what to say, they often resort to well meaning, but empty platitudes such as “God knew I could handle this”, or  “It takes a special kind of person to care for him.”

We have gotten stares in the stores. People ogle over the mysterious distortion and deformities of his body. I must admit, I myself have been intrigued by his abnormalities. After a while though I became immune to the horrified looks. I tuned out the awkward comments. What many would label as abnormal, we have chosen to make our own version of normal.

He is my son. My snuggler. My friend. He is smart in his own way and brings love with a grin. He goes everywhere with us. He participates in as much activities as he is ABLE. He has given us favor with many and opened doors for our family to travel. He gives us VIP parking with his little blue pass. He allows us to cut to the front of the lines at Disneyland. He is a trooper when it comes to ailments. He does not feel sorry for himself, nor does he compare himself to others. He has the strength to live and the courage to laugh. He is my sunshine when my day is grey.

This little boy who has “nothing to offer” makes my world. Of course he is getting heavy. He is all dead weight because he has no head, neck or trunk control. He cries in the night. His body is twisted like ragged old towel. His bones are fragile and his fingers are distorted. His feet are bent like a steel pole under the pressure of a thousand pound weight.

But his smile...

His smile is the most powerful expression of love I have ever seen. It is contagious. It is infectious and piercing. His joy lights up all he comes in contact with. His laughter causes the grumpiest person to change their mood. He has a peace most people spend their entire lives seeking. This young man in all of his unproductivity produces more happiness than a crowd of hippies in a marijuana field.

He has nine regular doctors who have done their best, which sometimes includes doing nothing at all. His needs are based on life expectancy. The need to survive outweighs the need to be straight. The need to live is more vital than the need for many important surgeries. He lives with 2 inguinal hernias. Both of his hips are out of socket. His corneas are clouded. His chest caves in and his heart is displaced. He has scoliosis that is curving at a rapid rate. The list of aliments is longer than Santa Clause’s naughty or nice review.

Yet, through all of this he has not “ruined my life”. He has enriched it. God is not some sadistic manipulator and did not give my son to me to teach me some lesson. While I have gained an abundance of life skills from this experience, I would have learned other skills from a different experience. I am not special because I care for him. I simply chose to make the best out of our situation. Like I said: we’ve made the abnormal normal.

He who would be deemed a complication in life has given me great advantages. He has been an inspiration. If he can be happy by simply living, then I can no longer make excuses for my own distress. I figured if he did not feel sorry for himself then neither would I. Pulling up my boot straps, I changed my major in college from nutrition to communications. I finished with three kids in tow and taught my son everything I know as he listened while I read text book after text book aloud.

And while some call me strong. I consider myself privileged. I have seen places and met people I would have not met otherwise. People such as his amazing dentist, a woman who has no handicap children herself, yet volunteers her time and practice to meet the needs of children who’s are considered too severe for most dentists.

I do get frustrated, discouraged, and disappointed when life is not always smooth sailing. This is no different than any other person on this planet. Life is hard, but that is not my disabled child’s fault. He did not cause bad things to happen to me, and he is most certainly not a bad thing. If handicap people compensate their weaknesses with strength in another areas, just imagine how far people could go who have no crutch. Like them, to realize our full potential maybe we should learn to be free from the DIS and focus on our ABILITY.

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Special Thanks to:

Diana Zschachel 

Shriners Hospital

Far Northern Regional Center

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6 responses to “DisABLEd

  • Janice Haith

    Thank you for sharing. I loved your article.
    We need to change our perspective .

  • Renah

    Joy, you made me laugh out loud in a coffee shop and cry too.the strangers around me must think I’m crazy but I don’t care. Love this! Happy birthday mom!

  • Matilda Novak

    Your story (and pictures) went deep into my heart….Thank you, and may God continue to bless you, your sweet son, and all your dear ones.

  • Dawn Eisen

    Truly words that can only come from the heart of a mom.

  • Tiffany Rucker

    Joy, I am so happy to know that Sawyer is still putting up a fight . It couldn’t have been expressed any better than you did about being the mom of such a special angel, and just how much joy their smiles bring to our life’s. Sarah is my world and I wouldn’t change anything about her she is perfect in my eyes as I’m sure Sawyer is in yours, he’s grown to be quite the handsome young man, since I seen him before you moved from Hayfork. You all look real happy, tell Georgia that Sarah says hello and she remembers her and the play dates she had with her when they were little.

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