Beautiful's Story: Special Needs Parenting 101. (Part One)

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A mother writes about her daughter, who was born with special needs. This is her story.

Submitted: June 06, 2017

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Submitted: June 06, 2017

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Hello!  My name is Betsy Fry.  I live in Nashville, Tennessee (GO, Predators!!), with my husband, Michael, and our four children: Victor Michael (13), Ursela Joy (11), Cherise Hope (8), and Beautiful Myracle (5).  I am a homemaker-slash-homeschool teacher; my husband, meanwhile, works for the city of Nashville; he works for the Nashville schools.  I have been married to Michael for about 16 years, and I love him (and the kids) with all my heart and soul.

Our youngest daughter, Beautiful Myracle, was born with the odds stacked against her.  She was born with something called Ohtahara syndrome, which is a rare neurological disorder characterized by seizures.  It affects newborns usually within the first three months of life (often within the first ten days) in the term of epileptic-type seizures.  It's most commonly caused by metabolic disorders or structural damage to the brain, though most causes of OS can't really be determined.  The EEG is the main diagnostic tool; babies who do have OS have a characteristic pattern of "high voltage spike wave discharge" in their brains during any seizure events.  This was how Beautiful was diagnosed.

The news was devastating, to say the very least; but Michael and myself were determined to try to help our baby girl in any way possible, to give her some semblence of a viable, happy life, even when she was clearly disabled.  We wanted to love her and give her all the best that life has to offer, which is what we have done these past five years she has been in our lives.  She is a very happy, outgoing child who can say much, even without speaking a word: her facial expressions and her eyes speak volumes.

Unfortunately, Beautiful will need supportive and systematic therapies throughout her entire life.  She is unable to walk, speak, feed or dress herself, even go to the restroom on her own (she wears diapers).  She is in a wheelchair and is fed by a tube in her nose (or in her stomach).  She is a beautiful child; she truly lives up to her name.  She has long, dark-brown hair that she usually wears long and loose, big brown eyes, and dimples in her cheeks when she smiles; she is small for her age and is sturdily built.  She does wear oxygen as she has breathing problems (sathma and allergies) and has been in and out of the hospital with pneumonia or asthma attacks or uncontrolled seizures; one never knows when she will get sick. One minute she can be reasonably healthy, and the next, fighting for her very life.

Cherise, Victor, and Ursela are very good with their little sister: they love helping us care for her and trying to make her smile or laugh (they usually succeed).  They love playing with her or reading her stories or just holding or cuddling her (or comforting her whenever she has yet another seizure).  They have learned to love even "the least of these" and do it abundantly and very well.  I am very proud of our older children, and so is Michael.  I don't know what we would do without them (or without Beautiful, for that matter).  I can't imagine our lives without Cherise, Victor, Beautiful, or Ursela.  They have truly been God-sent blessings!

Well, I hate to go, but Beautiful is seizing again; must tend to her and hope that it lets go within a ffew minutes' time, or it will be yet another trip to the hospital by ambulance for her. *Sigh* Just say some prayers that we are able to get the seizures stopped and that if she does have to go to the ER she doesn't have to stay too long in the hospital; any and all prayers will be appreciated and welcomed! Will keep you up to date about this latest episode; stay tuned!  God bless!

~Betsy Fry, Beautiful's mommy.

*end of part one!*


© Copyright 2017 Karen Lynn. All rights reserved.

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