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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Tuesday, May 29, 2012


While I was pregnant with Timmy I heard terms like Holoprosencephaly, Down Syndrome, Bilateral Anopthalmia etc. The meaning and complexity of these terms were so overwhelming. I delved into research to help me to better understand my son's condition and so I would be able to educate family and friends of my son's complex medical condition. It was apparent that my family or any of our friends understood the situation we were preparing to face.
While pregnant and soon after my son's birth I was introduced to terms like Special Needs, Disabled, Mentally Challenged, Retarded. Before my pregnancy with Timmy the meaning of these words and the affect these words had on others when used never crossed my mind.
Upon hearing of my son's medical condition and hearing these words being used by medical professionals, friends and family, the meaning of these words struck a raw nerve in my heart and head.
Over the past 8  years I have spent many hours analysing these words. For some reason the meaning of these words, in my opinion, just don't fit anyone who has a medical condition of any severity.
Special Needs - Everyone in humanity, young and old and creatures of Nature are "special" in their own way. And we all have "Needs." So why should this term be used for only a select group of people?
Disabled - When this word is used by persons in society it means; The inability to preform a given task. Well, this isn't true. If a person with a medical condition of any severity, is given the opportunity to "try" and if the given task is or can be adapted the person has the ability to carry through with what is asked. Parents or other caregivers of those with medical conditions have to be creative, inovative, and demand things which will help their loved ones to be "abled" in society.
Mentally Challenged - EVERYONE in society is lacking cognitively or behaviorally in some area. No one person is "perfect" in all areas. Some may be perficient in the areas of spelling, reading, math etc. but have psychological problems. While those who do not have psychological problems may have trouble with spelling, reading, math etc. So this term doesn't apply to a select group of people.
Retarded - It is my opinion, those who use this word are the ones who are "Retarded." People who do not take the time to ask questions, to try to educate themselves about others in society and to get to know those with medical conditions as a "whole" person are simply the ones who are lacking.
I chose to use the term "Uniquely Gifted" or "Unique Needs" to describe my son's medical condition.
The meaning of the word "unique" is; One of a kind.
The meaning of the word "gifted" is; Having a special talent.
Well these two words used together describe my son and others who are different for what ever reason.
The above video shows just how having HoPE, patience, being strong, the will to help and determination can bring about MIRACLES!
With HoPE,  Love, Caring, Patience, Strength, and Determination MIRACLES can come to be for everyone who is UNIQUELY GIFTED!

1 comment:

preemiepower said...

We all knew Timmy was star when he was born. Although he scared the bajeesus out of me many times in the NICU, he always looked up at me like, it's OK. I've got this, until his petrified nurse could get his ET tube back in place. He is a very special boy who touches the heart of everyone who meets him. Love you Timster....