Scotty was almost 8 years old when he finally was accurately diagnosed with Angelman Syndrome (AS). He was misdiagnosed with Cerebral Palsy on his first year well visit. I am still in shock that we just celebrate his 17th year of life on April 8!
Life with AS is far from easy. It is a life full of doctor’s visits, hospital stays, upper respiratory infections, chronic constipation, chronic reflux, incontinence, anxiety, feeding issues, sleeping disorder, sensitivity to the heat and sun, unsteady gait, developmental delays, lack of speech, walking and balance disorders, and worst of all seizures. My son will require life-long care.
There is not a day that goes by that I am not overwhelmed with the thought of leaving my Scotty behind. I fear for his care and overall well being after I take my last breath. This is a cruel world filled with evil people who find pleasure in harming the innocent. My son is the purest form of love and joy!!! These blessed characteristics are also a curse. It leaves him vulnerable to the evil among us. I do my best to protect him and keep him safe. My purpose in life is to have him never doubt that he is loved!!!
This page was created originally to raise money and share a fundraising event for one of the agencies that funds research to find a cure for Angelman Syndrome. Although there is talk of a cure, my hope is fading with each day I get older that it will happen in our life time. I don’t know what a cure will look like? What I do know is that I adore my son. What is Angelman Syndrome?
His innocence is something I celebrate and yet fear. His trusting nature is sweet and yet terrifying. His unawareness of the evil in the world makes him pure and endearing but leaves him incredibly vulnerable.
In the quiet of the night tears just fall. These tears are at times silent and slide down my aging face. But when the fear overtakes my spirit those same tears are choreographed with guttural sobs that I dare not allow anyone to witness. For I am the mother of an exceptional child and strength is what must be visible at all times. The moments you won’t see are in he still of the night when all walls are down. As I embrace the calm silent night terror rises up in me and that is when the reality of our mortality punches me in my core.
Both realities that I ponder are incomprehensible to me. If he goes before me, I cannot even fathom that. Me without him? My lifeforce will leave if he departs before me. The thought of me taking my last breath knowing that I am leaving him to the unknown and no protection from the evil in this world is equally unfathomable. The best I can do is allow the tears to fall until I fall asleep and wake up to face yet another day. Give him my all. Wrap him in my love and do my best.
This page will be updates on Scotty. This page will be used to celebrate the small victories as well as sharing the struggles of a life with Angelman Syndrome.
Scotty Strong FB Page
This will be a glimpse of the SECRET LIFE OF AN ANGEL XOXO!
Life with AS is far from easy. It is a life full of doctor’s visits, hospital stays, upper respiratory infections, chronic constipation, chronic reflux, incontinence, anxiety, feeding issues, sleeping disorder, sensitivity to the heat and sun, unsteady gait, developmental delays, lack of speech, walking and balance disorders, and worst of all seizures. My son will require life-long care.
There is not a day that goes by that I am not overwhelmed with the thought of leaving my Scotty behind. I fear for his care and overall well being after I take my last breath. This is a cruel world filled with evil people who find pleasure in harming the innocent. My son is the purest form of love and joy!!! These blessed characteristics are also a curse. It leaves him vulnerable to the evil among us. I do my best to protect him and keep him safe. My purpose in life is to have him never doubt that he is loved!!!
This page was created originally to raise money and share a fundraising event for one of the agencies that funds research to find a cure for Angelman Syndrome. Although there is talk of a cure, my hope is fading with each day I get older that it will happen in our life time. I don’t know what a cure will look like? What I do know is that I adore my son. What is Angelman Syndrome?
His innocence is something I celebrate and yet fear. His trusting nature is sweet and yet terrifying. His unawareness of the evil in the world makes him pure and endearing but leaves him incredibly vulnerable.
In the quiet of the night tears just fall. These tears are at times silent and slide down my aging face. But when the fear overtakes my spirit those same tears are choreographed with guttural sobs that I dare not allow anyone to witness. For I am the mother of an exceptional child and strength is what must be visible at all times. The moments you won’t see are in he still of the night when all walls are down. As I embrace the calm silent night terror rises up in me and that is when the reality of our mortality punches me in my core.
Both realities that I ponder are incomprehensible to me. If he goes before me, I cannot even fathom that. Me without him? My lifeforce will leave if he departs before me. The thought of me taking my last breath knowing that I am leaving him to the unknown and no protection from the evil in this world is equally unfathomable. The best I can do is allow the tears to fall until I fall asleep and wake up to face yet another day. Give him my all. Wrap him in my love and do my best.
This page will be updates on Scotty. This page will be used to celebrate the small victories as well as sharing the struggles of a life with Angelman Syndrome.
Scotty Strong FB Page
This will be a glimpse of the SECRET LIFE OF AN ANGEL XOXO!
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