April has come and gone. Almost too quickly. April is commonly known as Autism Awareness Month. It is also National Child Abuse Awareness Month. Both of those causes are so close to our hearts in the Lee family. When our little Abby was born, almost 4 years ago, we felt as if perfect had just been born.
She was an unusual newborn. She slept through the night, never cried and smiled. Genuinely smiled on a regular basis. When Abby was around 3 Months old I began to worry that she wasn't looking at us enough. She didn't seem to notice when things were placed in front of her face. On her next doctor appointment (I was 6 weeks pregnant with our second by then) we brought up our concerns to her doctor. He simply stated her eye movements and contact might be a tad delayed. He looked into her bright blue eyes and told us there was nothing to worry about.
At four months old my spirit was telling me that something was terribly wrong. I made a doctor appointment for her. Still her pediatrician couldn't see a thing wrong. He did admit that she wasn't reacting to things like she should. He quickly referred her to a pediatric eye doctor. The appointment was set for two weeks later. Those two weeks were grueling. We had just spent around 200 dollars on visual stimulating toys as suggested by her doctor. As her appointment drew nearer Heavenly Father started to work with me. It was surreal how well my heart was listening to His still mall voice. A day didn't go by where I heard small whisperings' of what was to come; "She can't see the toys", "She can't see the lights" and then the day before her appointment, the hardest whispering to listen too "Abby is blind".
We got to the doctor, I could feel the anxiety in Jon's pulse as we held hands. The doctor looked into Abby's eyes for a few minutes. She asked questions. We probably didn't even hear them, but somehow managed to answer. Abby's eye doctor got up and left the room. We knew that was not a good sign. She came back. She looked at us, "Abby has Optic Nerve Hypoplasia. She is totally blind with no light perception." The next thing we remember hearing was that she would need a MRI because ONH often comes with other disabilities.
The MRI went the same way. I was 3 months pregnant by then, Abby was 5 months old. We were praying and pleading that her MRI would come back normal. My heart cried a thousand tears as I saw our baby strapped and bound to the table. I couldn't go back with her because of the pregnancy. Jon stayed with me and we waited. Two hours passed and I heard my little girl through two sets of double doors. Jon assured me that it probably wasn't her. I got up and started walking through the doors. Sure enough our Abby was done with her MRI and being wheeled out. I KNEW her even down to her tiniest noises.
Abby woke up shortly after we got back to her room. She was giggling and playing. The nurses were dumbfounded. Babies who come of sedation like that are normally lethargic after for at least a few hours. That's when I knew my girl was a fighter.
The two weeks waiting for her MRI results were grueling. The results came in and we had to meet with a neurologist to hear them. We were told that Abby had what's called Septo Optic Dysplasia or SOD. The frontal lobe of Abby's brain never fused together. There is a gap, one pinky wide, between the right and left hemisphere of her brain. We also learned that her pituitary gland (the body's major gland that distributes growth hormone, signals of hunger and thirst) was so small it was missed on the first review of her MRI results. We were told this would present issues especially when she hit puberty.
During all of this bad news, I often reflected on the dream I had when Jon and I were still newly weds. My grandfather Roger Johnson was standing about 15 feet away from me. A little girl with the bluest eyes was holding his hand. He told me this : "Our Father is sending this special spirit to you. Watch over her as I've watched over you". I woke Jonathan up after I awoke and told him that we were going to have a little girl. He looked at me perplexed...I wasn't even pregnant. One month later two little pink lines proved us both wrong.
A year after Abby's diagnosis we learned that Autism was a huge factor in children with Abby's disability. In fact, that she too, had Autism. So not only is our daughter blind, she has growth hormone problems, a sleeping disability, and Autism.
We have struggled immensely with all of these. Abby has struggled beyond belief She's faced numerous trips to the hospital, rapid weight loss, the inability to communicate with us, sleep deprivation, and much more. Through hard work and CONSISTENCY Abigail is now eating more regularly sleeping at night, learning new words each day and learning to walk. Although we know, that any moment, for reasons beyond us, she could stop any one or more of these things, we press on with faith.
We still have many more trials to face as Abby grows older and parts of her disabilities to face that aren't present for years to come. All of continue to learn and grow and make progress along with Abigail. I can't imagine being blind and Autistic at the same time. What fears and frustrations she must have!
Yet I know, that if I watch over her and be her constant guide that she'll always have love and comfort.
For parents who have children with Abby's disabilities my advice is to be consistent and have faith. Through God all things are possible, but only through faith and diligence are those things accomplished.
She was an unusual newborn. She slept through the night, never cried and smiled. Genuinely smiled on a regular basis. When Abby was around 3 Months old I began to worry that she wasn't looking at us enough. She didn't seem to notice when things were placed in front of her face. On her next doctor appointment (I was 6 weeks pregnant with our second by then) we brought up our concerns to her doctor. He simply stated her eye movements and contact might be a tad delayed. He looked into her bright blue eyes and told us there was nothing to worry about.
At four months old my spirit was telling me that something was terribly wrong. I made a doctor appointment for her. Still her pediatrician couldn't see a thing wrong. He did admit that she wasn't reacting to things like she should. He quickly referred her to a pediatric eye doctor. The appointment was set for two weeks later. Those two weeks were grueling. We had just spent around 200 dollars on visual stimulating toys as suggested by her doctor. As her appointment drew nearer Heavenly Father started to work with me. It was surreal how well my heart was listening to His still mall voice. A day didn't go by where I heard small whisperings' of what was to come; "She can't see the toys", "She can't see the lights" and then the day before her appointment, the hardest whispering to listen too "Abby is blind".
We got to the doctor, I could feel the anxiety in Jon's pulse as we held hands. The doctor looked into Abby's eyes for a few minutes. She asked questions. We probably didn't even hear them, but somehow managed to answer. Abby's eye doctor got up and left the room. We knew that was not a good sign. She came back. She looked at us, "Abby has Optic Nerve Hypoplasia. She is totally blind with no light perception." The next thing we remember hearing was that she would need a MRI because ONH often comes with other disabilities.
The MRI went the same way. I was 3 months pregnant by then, Abby was 5 months old. We were praying and pleading that her MRI would come back normal. My heart cried a thousand tears as I saw our baby strapped and bound to the table. I couldn't go back with her because of the pregnancy. Jon stayed with me and we waited. Two hours passed and I heard my little girl through two sets of double doors. Jon assured me that it probably wasn't her. I got up and started walking through the doors. Sure enough our Abby was done with her MRI and being wheeled out. I KNEW her even down to her tiniest noises.
Abby woke up shortly after we got back to her room. She was giggling and playing. The nurses were dumbfounded. Babies who come of sedation like that are normally lethargic after for at least a few hours. That's when I knew my girl was a fighter.
The two weeks waiting for her MRI results were grueling. The results came in and we had to meet with a neurologist to hear them. We were told that Abby had what's called Septo Optic Dysplasia or SOD. The frontal lobe of Abby's brain never fused together. There is a gap, one pinky wide, between the right and left hemisphere of her brain. We also learned that her pituitary gland (the body's major gland that distributes growth hormone, signals of hunger and thirst) was so small it was missed on the first review of her MRI results. We were told this would present issues especially when she hit puberty.
A year after Abby's diagnosis we learned that Autism was a huge factor in children with Abby's disability. In fact, that she too, had Autism. So not only is our daughter blind, she has growth hormone problems, a sleeping disability, and Autism.
We have struggled immensely with all of these. Abby has struggled beyond belief She's faced numerous trips to the hospital, rapid weight loss, the inability to communicate with us, sleep deprivation, and much more. Through hard work and CONSISTENCY Abigail is now eating more regularly sleeping at night, learning new words each day and learning to walk. Although we know, that any moment, for reasons beyond us, she could stop any one or more of these things, we press on with faith.
We still have many more trials to face as Abby grows older and parts of her disabilities to face that aren't present for years to come. All of continue to learn and grow and make progress along with Abigail. I can't imagine being blind and Autistic at the same time. What fears and frustrations she must have!
Yet I know, that if I watch over her and be her constant guide that she'll always have love and comfort.
For parents who have children with Abby's disabilities my advice is to be consistent and have faith. Through God all things are possible, but only through faith and diligence are those things accomplished.
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