Somehow I knew even before my youngest daughter's birth, that something was just not quite right about this pregnancy.
Unfortunately I was right.
My youngest daughter, Autumn, was born with Leber's congenital amaurosis.
Leber's is an eye disorder that primarily affects the retina, which is the specialized tissue at the back of the eye that detects light and color.
People with this disorder typically have severe visual impairment beginning in infancy.
In rare cases, delayed development and intellectual disability have been reported in people with the features of Leber's congenital amaurosis, my Autumn is one of those rare cases.
I can't begin to explain the heartache, the sadness that consumed me when we got the news.
I had already lost my first-born son when he was a month old to S.
I.
D.
S and my mother to cancer just two years prior to my son's death.
I was the caregiver for both of them as well.
I was only 16 when my mother was hit by a drunk driver and lost her right leg.
She was bed ridden for nearly a year.
My mother was pregnant when she was hit.
She recovered and gave birth to my healthy, beautiful baby sister, but within two years cancer would claim her life.
I am now 40 years old and I have been the caregiver to my daughter Autumn, almost every minute of every day for her entire life.
I know how hard it can be deal with the pressure and demands of being the constant caregiver and sole support of an individual.
My daughter is 11 now, and only started sleeping the nights through about three years ago.
On occasion I am still being awoken in the night, but for the most part our sleeping patterns have improved.
Autumn is delayed; she does not speak more than a few random words a day.
She is completely dependent on me to dress, bath, feed, and protect her.
Some days it is a challenge to recognize her emotional needs or to uplift her mood because of the lack of commutation.
Some days I have to restrain her to keep her from hitting herself in the face, arms, legs and so on.
She doesn't hit often anymore, but when she does, she often leaves badly bruised lumps on her body.
Being her mother, the emotional impact this has on me is devastating.
I admit it, I cry.
I want to calm her and make it all better for her, but sometimes I am at a lost to why she is so upset.
She loves when I sing to her, so I cradle her in my arms and I sing and pray that it soothes her.
In the 24 years that I have been a caregiver to numerous members of my family I have learned what a blessing it is to have the role of caregiver.
I am blessed.
Sure it is challenging, yes it is physically demanding, but I still would not trade my life for a minute.
It has been a unique and greatly rewarding experience.
I recently had to have a total hip replacement because I carried Autumn for so many years because she simply would not walk, but now I am back to myself and going strong.
It was unbearable being away from her for surgery and recovery.
I guess the thing that truly balances the demanding part of all this is the smile on her face, the look of joy in her eyes.
Children with special needs are still children and like all children, they need love, warmth, understanding and security.
Unfortunately I was right.
My youngest daughter, Autumn, was born with Leber's congenital amaurosis.
Leber's is an eye disorder that primarily affects the retina, which is the specialized tissue at the back of the eye that detects light and color.
People with this disorder typically have severe visual impairment beginning in infancy.
In rare cases, delayed development and intellectual disability have been reported in people with the features of Leber's congenital amaurosis, my Autumn is one of those rare cases.
I can't begin to explain the heartache, the sadness that consumed me when we got the news.
I had already lost my first-born son when he was a month old to S.
I.
D.
S and my mother to cancer just two years prior to my son's death.
I was the caregiver for both of them as well.
I was only 16 when my mother was hit by a drunk driver and lost her right leg.
She was bed ridden for nearly a year.
My mother was pregnant when she was hit.
She recovered and gave birth to my healthy, beautiful baby sister, but within two years cancer would claim her life.
I am now 40 years old and I have been the caregiver to my daughter Autumn, almost every minute of every day for her entire life.
I know how hard it can be deal with the pressure and demands of being the constant caregiver and sole support of an individual.
My daughter is 11 now, and only started sleeping the nights through about three years ago.
On occasion I am still being awoken in the night, but for the most part our sleeping patterns have improved.
Autumn is delayed; she does not speak more than a few random words a day.
She is completely dependent on me to dress, bath, feed, and protect her.
Some days it is a challenge to recognize her emotional needs or to uplift her mood because of the lack of commutation.
Some days I have to restrain her to keep her from hitting herself in the face, arms, legs and so on.
She doesn't hit often anymore, but when she does, she often leaves badly bruised lumps on her body.
Being her mother, the emotional impact this has on me is devastating.
I admit it, I cry.
I want to calm her and make it all better for her, but sometimes I am at a lost to why she is so upset.
She loves when I sing to her, so I cradle her in my arms and I sing and pray that it soothes her.
In the 24 years that I have been a caregiver to numerous members of my family I have learned what a blessing it is to have the role of caregiver.
I am blessed.
Sure it is challenging, yes it is physically demanding, but I still would not trade my life for a minute.
It has been a unique and greatly rewarding experience.
I recently had to have a total hip replacement because I carried Autumn for so many years because she simply would not walk, but now I am back to myself and going strong.
It was unbearable being away from her for surgery and recovery.
I guess the thing that truly balances the demanding part of all this is the smile on her face, the look of joy in her eyes.
Children with special needs are still children and like all children, they need love, warmth, understanding and security.
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