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....
Two Horses
A uthor Unknown
Just up the road from my home is a field, with two horses in it.
>From a distance, each horse looks like any other horse.
But if you stop your car, or are walking by, you will notice something quite amazing....
Looking into the eyes of one horse will disclose that he is blind. His owner has chosen not to have him put down, but has made a good home for him.
This alone is amazing. If you stand nearby and listen, you will hear the sound of a bell. Looking around for the source of the sound, you will see that it comes from the smaller horse in the field.
A ttached to the horse's halter is a small bell. It lets the blind friend know where the other horse is, so he can follow.
A s you stand and watch these two friends, you'll see that the horse with the bell is always checking on the blind horse, and that the blind horse will listen for the bell and then slowly walk to where the other horse is, trusting that he will not be led astray.
When the horse with the bell returns to the shelter of the barn each evening, it stops occasionally and looks back,
Making sure that the blind friend isn't too far behind to hear the bell.
Like the owners of these two horses, God does not throw us away just because we are not perfect or because we have problems or challenges.
He watches over us and even brings others into our lives
To help us when we are in need..
Sometimes we are the blind horse being guided by the little ringing bell of those who God places in our lives.
Other times we are the guide horse, helping others to find their way....
Good friends are like that... You may not always see them, but you know they are always there..
Please listen for my bell and I'll listen for yours, and remember...
Be kinder than necessary-
Everyone you meet is fighting
Some kind of battle.
Live simply,
Love generously,
Care deeply,
Speak kindly.......
FOR WE W A LK BY F A ITH A ND NOT BY SIGHT
On the first day of Christmas, the good Lord gave to me:
a child with special needs.
On the second day of Christmas, the good Lord gave to me:
a heart full of love for my child with special needs.
On the third day of Christmas, the good Lord gave to me:
an ache in my heart and a heart full of love for my child with special needs.
On the fourth day of Christmas, the good Lord gave to me:
a tear in my eyes, an ache in my heart and a heart full of love for my child with special needs.
On the fifth day of Christmas, the good Lord gave to me:
an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.
On the sixth day of Christmas, the good Lord gave to me:
a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.
On the seventh day of Christmas, the good Lord gave to me:
a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.
On the eighth day of Christmas, the good Lord gave to me:
supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.
On the ninth day of Christmas, the good Lord gave to me:
remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a special needs.
On the tenth day of Christmas, the good Lord gave to me:
an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.
On the eleventh day of Christmas, the good Lord gave to me:
a sense of pride and courage, an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.
On the twelfth day of Christmas, the good Lord said to me:
Reach out and share your sense of pride and courage, your appreciation of small accomplishments, your remarkable doctors & therapists, your supportive friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with special needs.
Most kids at the age of two years want to watch Barney, Elmo, or Sponge Bob.
Not Nate! The other morning I was flipping through the stations on T.v. trying to find something educational to entertain Nate for a few minutes. I passed by the infomercial of the Hoover Turbo vacuum cleaner. Nate happened to notice the ad on the T.v. He started throwing a temper tantrum requesting to watch the infomercial. Strange as it may seem, he stood in front of the T.v. for the entire 30 minutes that the Hoover Turbo infomercial aired.
Most kids at the age of two request toy cars, dolls, action figures, or tea sets. Oh No, not Nate! He request a vacuum cleaner!
Now how lucky can I get? This kid LOVES to help clean! Can I be lucky and his cleaning obsession, addiction or his OCD last through his teenage years?
I know what Santa is bringing this little guy for Christmas....
Sshhh, let's not tell him, but Santa may bring him a cordless vacuum which actually will pick up the trash on the floor.
A True Friend isn't judgemental or have low expectations of you, like your parents or teachers may have. A True Friend only expects you to be who you are and the best that you can be.
A True Friend doesn't taunt or tease you, so that you strike out physically and are the one to get into trouble. A True Friend is a person who brings out the good qualities in you and in the process makes you smile.
A True Friend gets overly excited with the smallest of your accomplishments.
Timmy is Alli's True Friend!
Here are a couple of pictures of Alli helping to give Timmy his medication and his snack.
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!
Looking into the eyes of one horse will disclose that he is blind. His owner has chosen not to have him put down, but has made a good home for him.
This alone is amazing. If you stand nearby and listen, you will hear the sound of a bell. Looking around for the source of the sound, you will see that it comes from the smaller horse in the field.
A ttached to the horse's halter is a small bell. It lets the blind friend know where the other horse is, so he can follow.
A s you stand and watch these two friends, you'll see that the horse with the bell is always checking on the blind horse, and that the blind horse will listen for the bell and then slowly walk to where the other horse is, trusting that he will not be led astray.
When the horse with the bell returns to the shelter of the barn each evening, it stops occasionally and looks back,
Making sure that the blind friend isn't too far behind to hear the bell.
Like the owners of these two horses, God does not throw us away just because we are not perfect or because we have problems or challenges.
He watches over us and even brings others into our lives
To help us when we are in need..
Sometimes we are the blind horse being guided by the little ringing bell of those who God places in our lives.
Other times we are the guide horse, helping others to find their way....
Good friends are like that... You may not always see them, but you know they are always there..
Please listen for my bell and I'll listen for yours, and remember...
Be kinder than necessary-
Everyone you meet is fighting
Some kind of battle.
Live simply,
Love generously,
Care deeply,
Speak kindly.......
FOR WE W A LK BY F A ITH A ND NOT BY SIGHT
