After The Tears. ...: Parents Talk About Raising Children With Disabilities. ... (Essays)

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Status: In Progress  |  Genre: Religion and Spirituality  |  House: Booksie Classic
A group of parents talk about raising their children, who have special needs.

Submitted: June 15, 2017

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Submitted: June 15, 2017

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Raising children is hard work anyway, but it's even more so in my case because my son, Parker, happens to have an autism spectrum disorder (ASD).  He seemed to be developing on pointe when he was a baby, but then, roughly around the age of two, he "regressed"; it was as if he started going backwards, and he started losing learned skills.  When I took him to the pediatrician and voiced my concerns, he said not to worry because I was a nervous parent.  When we got the diagnosis of autism, my world as I knew it ended right then and there.

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My daughter, Ronee' Le-Anne, who is now a beautiful, grown woman with a family of her very own, has struggled with disabilities all her life.  She was born very premature, weighing less than a pound and a half at birth; doctors did not give her much hope in surviving; but this child was a lot tougher than we gave her credit for: she not only beat the odds, she trounced them, and handily, at that.  She struggled with severe allergies, was diagnosed as having severe asthma before she was six months old.  She spent more time in the ER or the hospital than in her very own crib; it was very bad, and difficult for my husband and myself.

When she was a year and a half years old, Ronee' was badly injured in an accident; she was comatose for several months and suffered numerous injuries.  Doctors feared for her very life and they were doubtful that she would ever wake up or even walk again; but God had other plans.  Ronee' not only woke up, with her senses intact (which was nothing short of a miracle), but she eventually learned to walk again, thanks to therapy, with crutches and braces on her legs, but she was WALKING, under her own power.  It was a God moment, one I still thank Him for all these years later.

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Johnny was not expected to live beyond the age of five.  When he was learning to walk at about a year and a half old, he seemed "clumsier" somehow, especially when it came to negotiating stairs or uneven surfaces.  Johnny would lose his balance and would, therefore, end up on the floor.  We took it as part of his being born premature; we didn't really think nothing of it; but then, at a well-baby checkup, the doctor on staff seemed concerned that Johnny had something physically wrong going on with him, so he suggested that we take him to a specialist for tests; he suspeced that Johnny had a neuromuscular disorder of some sort.

The news hit us like a ton of bricks.  It was the worst fear any parent could ever face.  The dreams we had for our precious litlte boy (playing baseball or running around or climbing or jumping) vanished just like THAT.  

The tests later revealed the worst possible news.  Johnny did, indeed, have a neuromuscular disorder.  He had Duchenne muscular dystrophy, the severest form of the disease, and the type that was fatal.  The word fatal flew at my face like a startled bird.  Johnny would probably be dead by the time he was five years old, according to the doctor.  At the news, we cried.  We absolutely bawled.  Our world as we knew it had been shattered to pieces.

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Our daughter, Tinley, was born with brain damage.  She was later diagnosed with having spastic quadriplegic cerebral palsy; she had all the symptoms.  

Because of it, she is unable to walk or talk on her own; she is basically nonverbal and is in a wheelchair made especially for her.  Her movements are disjointed and stilted; she will never be able to feed herself or dress herself, and she will never be potty-trained, even though she is eight and a half now.

 The cause of her cerebral palsy?  A medical accident.  A doctor who didn't know what he was doing upon her delivery screwed up big time and because of his negligence, our daughter is forever damaged; she will never have a normal life.  Angry?? You don't know the half of it.  I am beyond furious; and we are in the middle of a court hearing at this time, trying to get restitution for our daughter, and trying to get this beehive's medical license revoked.  He's already damaged our child; what's to say that he won't damage any more children????

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Huguley has Down syndrome.  His condition was diagnosed while still in the womb.  Because of it, he is mentally disabled, with an I.Q. of 50, even though he is 13; he functions at the level of a five-year-old.  Even though he is pushing six feet tall and weighs nearly 200 pounds, his mind is like a young child, and sometimes his behaviour embarrasses us (and his siblings).

 People often don't understand why Huguley is the way he is; and sometimes kids (and even grown ups) tease him, calling him terrible names, and causing him (and us) unnecessary pain and suffering.  People just don't understand or know what it's like raising a child like Huguley, nor do they even want to know, which is such a shame.

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Gaynor Denise has a metabolic disorder, which has affected her development.  She is unable to walk and will probably get worse over time.  She will also probably die before she reaches the age of three ... that is, IF she's lucky.  

Having a child with so many complex needs has been hard, and there isn't a day where we don't feel cheated or where we don't cry.  We cry for the child that could have been, and we cry for us because we know that Gaynor's death is innement, and we have such a hard time dealing with that and trying to explain our situation to people, let alone, our remaining children.

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Albinism.  Until Baylor was born, we had never even heard of it, let alone, encountered anybody else with this condition.  Because of a lack of pigment in his skin, eyes, and hair, Baylor's skin is so pale it looks almost white, his hair is as white as snow, and his eyes are a pale, pale blue.  

He is susceptible to burns, so whenever he goes outside during the hot  months of the year (and even during the cooler months) he has to be slathered with sunscreen and wear long sleeves, pants, and a hat, anything to protect his sensitive skin and  his eyes.  He is also visually impaired and is nearly blind; he uses a cane to get around because his vision is so poor.  Sometimes I feel that we are the only people in the world that are going through this, and I feel frustrated and angry all the time.

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Five fingers, one hand.  Eight toes.  Scars on his face due to clefting.  People tend to notice these things first upon seeing  Griffen, our son.  They see his disabilities first before seeing the child, and it drives us up the wall, each and every time. Why can't people learn to see past his problems and see the beautiful eight year old boy that we see????  Griffen is a CHILD first; he is NOT his disability!!!!

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Hadassah Grace was born with cystic fibrosis.  Because of this, she has problems digesting food and often has trouble breathing.  She coughs a lot and has trouble expelling any extra mucous that may form; she has to have physiotherapy several times a day (for an hour each time) to help clear her lungs and her airway or else she could get very sick, more than what she already is now.  She has to take at least 30 different medications to help aid in her breathing and in her digestion, she is fed by a special feeding tube in her belly (to get extra protein and for her to try to gain needed weight; she is awfully skinny), and she has to have breathing treatments and wear oxygen when her lungs are giving he the most trouble.

Hadassah's disease is unfortunately fatal, but she is now ten years old and for now is doing relatively well, all things considering.  But we know that anything can happen and she can end up in the hospital when she (or us) least expect it. As an example, last year, we were going to go see "The Greatest Show On Earth" at the Coliseum here, and we were all looking forward to it; but then Hadassah had a spell and she collapsed; she ended up being rushed to the hospital, where doctors and nurses there saved her life.  She was in the hospital for a week.  It was super scary; and we all felt horrible for Hadassah because she (and we) were all looking forward to going to the circus, and we never even made it there.  It was awful!

*End of part one!*


© Copyright 2017 Karen Lynn. All rights reserved.

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