Kermit: Special Needs Parenting 101.

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Status: In Progress  |  Genre: Religion and Spirituality  |  House: Booksie Classic
A boy deals with living with chronic illness. This is his inspiring story, as told by his mother.

Submitted: June 03, 2017

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Submitted: June 03, 2017



My beautiful son, Kermit William, is a sweet little boy, and I love him dearly.  

He was born seemingly healthy, but then, about the age of 1 1/2/2 years, he started exhibiting symptoms of something neurological going on.  When I took him to the doctor's, the doctor advised me to take him to the hospital, where he could have tests, to see if doctors there could pinpoint any potential problems.

That was when his world (and mine) changed forever.

The diagnosis was mind-numbing.  Muscular dystrophy.  He would be dead before he reached his teens or even twenties. He would need a wheelchair and would have to wear braces on his legs; he would also get weaker until he could no longer breathe on his own, with a cold or pneumonia (or some other illness) killing him.

It was terrifying beyond belief.  

From a seemingly healthy, happy tot, Kermit would need help just to survive life.  Not only he would need help, but so would we; we needed help on the emotional and spiritual level.

At first, I was very angry.  Angry at God, angry at my husband, and angry at everybody.  It just didn't seem right or fair that an innocent child would be made to suffer needlessly through an illness that was nothing of his doing.  I didn't want to talk to anybody or see anybody; I just wanted to lock myself (and my family) inside the house and never go out again.  I became severely depressed; it was all my husband could do to keep me from killing myself (or even killing Kermit).

But then friends at church and in the neighborhood reached out in love.  They had heard of our plight and seemed determined to help William (my husband) and Kermit get through this time of uncertainty and illness together, which is exactly what they did.  While life is still not easy at times, we have since learned to accept what has happened to Kermit and to us, and we are determined to help our son in any way we can, to make sure he has the maxmimum amount of support, love, and help.

Kermit is now four and is walking with braces on his legs and tiny little crutches attached to his elbows; the crutches act as "extra legs", to help him with his balance, and to help him get around easier, since his muscles are weak.  He falls often, but falls never seem to slow him down any: he just gets back up, the laughter bubbling from him like a geyser.  He is always smiling or laughing; Kermit is one of the happiest kids I know, and he is an absolute joy.

But the grim reality of his disease becoming worse is always there, like a bad song, and we try not to cry in front of him; we save the crying until after Kermit is in bed or if he is at his grandparents' place.  We don't want to have him see us unhappy.  So far we've managed to hide the pain from him, but knowing full well that one day we will have to have a serious talk with him when he starts asking questions about his "funny walk" and why he has to wear "cages" on his legs or why he doesn't seem to get around as easily as his friends do.

*end of part one*

© Copyright 2019 Karen Lynn. All rights reserved.

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