Tag Archives: disabled

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


SuperMom

SuperMom

Just call it like it is… from my breastfeeding cape to my sliding doors minivan, I am a mom. My reputation as a stylish, fun, and outgoing woman always came with a side of drool, diapers, whining, and now, as my girls advance into teen years, boyfriends.
At the age of fifteen I planned my first pregnancy. Craziness right?!? Not as outlandish as some might think. It was my way to make sense of this disjointed planet we live on. As many young girls do, I struggled with my identity, my purpose, and my ability to accomplish my dreams. I sought solace in motherhood, hoping to ease the discomfort I could not understand. Without all the tools in my box I started on a journey to build a household.
Eighteen years later my oldest daughter is now a young lady. She is b-e-a-u-tiful. She is smart, talented, and thoughtful. I look back at all the things I did right and the many things I could have done better. All in all, I am most proud that through trail, pain, and happiness, she and I have a strong connection. No matter what that girl goes through, she knows without a shadow of a doubt, she has a momma who loves her; not one who always agrees with her; not one who always condones all of her behavior; not one who placates her; but one who wants the best for her and will never give up on bringing about wholeness.
Beyond her I have raised my severely disabled son who has been the delight of my life. His happy go lucky smile and his loving spirit brightens everyones day. Most of the time he does not have a care in the world. He trusts that he is going to be well taken care of. He provides life, hope, strength, and love to all who come in contact with him. After fourteen years of diapers, seizures, and throw up, I still would not trade him for all the money in the world.
Then along came her. This little girl who thinks so far outside the box I can’t even fit her on my grid. After taking years of parenting classes, reading books on the subject, and inquiring from matured parents, she has challenged my very being to grow. I love her with all my heart and soul, this girl who can make me think more than my brain has capacity. She understands computer science, mathematics, and pokemon, all the while my internal mother board struggles to upgrade. With an outgoing personality, the word stranger isn’t even apart of her vocabulary. This fun, imaginative, and cute girl has captured my affections as well as my attention.
As my nurturing side consumed my being, I began to love those who struggled with their parental figures. I opened my arms and my home to many kids through the years. Some of these young people are now adults and even have their own families. One lady in particular has blended with our family to point we think of her as our own. She is sister, daughter, and friend. I have dedicated my life to her success in every way including financial, physical, and emotional. The love she reciprocates is unparalleled and I am honored to know such an amazing human being.
It was when I became a step-mother that I truly knew what it was to lay down my life for others. My children are easy to love. They are mine. Flesh and blood unites through anything, however those we love out of choice can be changed. I imagine this love to be much like those of adoptive parents. I get to on purpose care for others I did not bring into this world. I get to carve out a special place in my heart for them to call home. I look at them with the same affection I do the others. Not because I have to, but because I have given them power over my love. They have my devotion, my commitment, and my love which never waivers. When It comes time to share them with their mother, I do not find myself thinking out of sight out of mind. On the contrary I feel a hole, a loss, and a longing to have them in my presence.
Both are girls. The oldest has a strong personality. She is compassionate, friendly, and opinionated. She has a great sense of style, good taste in food, and a heart of gold. Though she, like most children from broken homes, wishes her parents were still together, she still loves, honors, and respects both of them and their new counterparts. Through sharing homes, sharing attention, and sharing lifestyles, this girl puts in her all and comes out on top.
Her younger sister is equally fantastic. She is creative in every way. She looks at the world full of black and white, but carefully adds subtle shades of grey. Yet, it is when she adds color she truly astonishes with articulate, artistic thoughts. She is full of wit, full of knowledge, and full of determination. She is not the social butterfly her older sister is. She craves one-on-one time which requires intentionality. She flourishes the most when she is given the attention she needs to express herself.
Now that I am much older than when I began, I find myself delightfully happy to have started the process all over again. With yet another girl, my life feels complete. I find myself with sensations of euphoria as I look into my baby’s eyes and see such wonder. I feel confident in my skills as a mother. I enjoy and embrace the ups and downs life brings my way. As I hold this tiny creature, bliss fills my being. She was hard fought for. After conquering my fears of raising any more children, we saved for a vasectomy reversal. Next came miscarriage after miscarriage after miscarriage. Finally, my cup was full only after enduring the nine months of pregnancy’s glows and hormonal blows. Consequently, for the last four months I have been suffering with enormous amounts of postpartum joy.
Through it all, my carefree, spontaneous, thrill seeking side still exists. I did not surrender my dreams, my ambitions, or my goals for my children. They are not a burden or a dead weight around my ankle. They are right there with me. Through thick and thin, through fire and storm, my children – all of them – teach me, love me, and give me courage. We do family well. We support each other, lift up each other, and seek the best for each other. We celebrate individuality, praise each other’s giftings, and strive for unity. Out of humility we serve each other and forgive shortcomings.
I am not afraid I will not arrive. I already have, and I am bring my entourage with me.


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