It is Halloween and in a few hours our street will be filled with ballerinas and superheroes of all sizes rushing from house to house on a singular mission to fill their little plastic pumpkins with more sugar filled treats than can possibly be consumed by one little person.
It is by far Scotty's favorite holiday and for the last twelve years his costume of choice has been a vampire. No longer interested in pursuing the inevitable sugar rush, our little vampire is now content to sit in the driveway and hand out candy to all the little monsters who dare approach.
We have no idea where his fascination with vampires came from, but he cannot be talked into anything else. So every year we apply the makeup that for a few hours transforms his face and alters his personality.
It seems like Halloween costumes come in two varieties...sweet, adorable and angelic or scary, horrifying and devilish. Around our house it is like Halloween everyday. On any given day, hour or minute our Scotty can quickly change from an angel to a devil and then back again! We never know who might be lurking just beneath the surface of that beautiful face mask he wears.
Angelman Syndrome is named for Harry Angelman, a pediatrician who first identified the syndrome. (Harry Angelman) Therefore these children are often referred to as angels. The word angel brings to mind all sorts of heavenly blessed images and this is how our children are perceived. However, it seems many of Harry's angels, my son included, have moments when the word angel would be the very last word that would describe them.
It is by far Scotty's favorite holiday and for the last twelve years his costume of choice has been a vampire. No longer interested in pursuing the inevitable sugar rush, our little vampire is now content to sit in the driveway and hand out candy to all the little monsters who dare approach.
We have no idea where his fascination with vampires came from, but he cannot be talked into anything else. So every year we apply the makeup that for a few hours transforms his face and alters his personality.
It seems like Halloween costumes come in two varieties...sweet, adorable and angelic or scary, horrifying and devilish. Around our house it is like Halloween everyday. On any given day, hour or minute our Scotty can quickly change from an angel to a devil and then back again! We never know who might be lurking just beneath the surface of that beautiful face mask he wears.
Angelman Syndrome is named for Harry Angelman, a pediatrician who first identified the syndrome. (Harry Angelman) Therefore these children are often referred to as angels. The word angel brings to mind all sorts of heavenly blessed images and this is how our children are perceived. However, it seems many of Harry's angels, my son included, have moments when the word angel would be the very last word that would describe them.
Recently, I was so saddened by some chatter
in the facebookisphere. The chatter surrounded a comment that was posted admonishing those who dared to write what I am assuming to be an honest comment about how difficult their angel can be. It felt like a hand slap that
was meant to hurt and to shame...what struck me the most was that all the comments were written by people, who like us, are living their life with an angel.
Certainly this is most likely one of those "mind my own business" moments, but it has been weighing on my heart and I decided I couldn't let this one go.
What astounds me the most is that the majority agreed wholeheartedly with the poster. I contemplated posting a comment, but felt sure in doing so that I would have released an avalanche of fire and brimstone on my head in such a public forum. I fully expect that to happen anyway, but I am okay with that.
What astounds me the most is that the majority agreed wholeheartedly with the poster. I contemplated posting a comment, but felt sure in doing so that I would have released an avalanche of fire and brimstone on my head in such a public forum. I fully expect that to happen anyway, but I am okay with that.
I don't know who the comment was meant for specifically or the circumstances, but I do know that many people who read it will now no longer will feel comfortable sharing their journey with a group of people who they once felt safe with. I find it shocking that such hurtful comments would come from a group of people that you would think would always have your back...people who are fighting the same fight.
Many families, like ours, have angels who have many autistic characteristics and SEVERE behavior issues...and they don't sleep. We do everything in our power every single day, usually functioning on a scant few hours of sleep, to help them with self control and to minimize their frustration.
At times our lives are much like living in a war zone and we need others who understand to help us soldier on to fight another day. I personally have gotten hit in the face five times today by my son...a twenty-five year old man who I love with ALL my heart. It hurt my face and it hurt my feelings. And this was a good day. Our days are spent walking on eggshells waiting for the next event that will shatter the peace and quiet of our homes. Those who have not experienced this cannot even begin to imagine what it is like.
I am so blessed to have a wonderful husband, a supportive family and a huge circle of friends to help us manage our sometimes unmanageable life. I know so many parents who are handling this without any support at all...I can't imagine what their life must be like and my heart goes out to them.
We do believe that Scotty is a blessing from God and we honor that every single day, but it doesn't make it any less difficult. I also believe that it is our duty to encourage and lift one another up instead of shaming and humiliating those who need our help and encouragement.
Many families, like ours, have angels who have many autistic characteristics and SEVERE behavior issues...and they don't sleep. We do everything in our power every single day, usually functioning on a scant few hours of sleep, to help them with self control and to minimize their frustration.
At times our lives are much like living in a war zone and we need others who understand to help us soldier on to fight another day. I personally have gotten hit in the face five times today by my son...a twenty-five year old man who I love with ALL my heart. It hurt my face and it hurt my feelings. And this was a good day. Our days are spent walking on eggshells waiting for the next event that will shatter the peace and quiet of our homes. Those who have not experienced this cannot even begin to imagine what it is like.
I am so blessed to have a wonderful husband, a supportive family and a huge circle of friends to help us manage our sometimes unmanageable life. I know so many parents who are handling this without any support at all...I can't imagine what their life must be like and my heart goes out to them.
It is not our place to judge others until we have
walked a few miles in their shoes.
It is wrong...
It is wrong...
And it is hurtful.
We do believe that Scotty is a blessing from God and we honor that every single day, but it doesn't make it any less difficult. I also believe that it is our duty to encourage and lift one another up instead of shaming and humiliating those who need our help and encouragement.
Maybe...just maybe...a comment that sounded like
a complaint was really nothing more than a cry for help.
A soft answer turns away wrath,
but a harsh word stirs up anger.
Proverbs 15:1
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| Happy Halloween |
Thank you Joanne. Life is not a contest as to who has the best or worst experiences.
ReplyDeleteSharing my favorite quote:
"Be kinder than necessary. Everyone you know is fighting some kind of battle. You never know when a simple word or a kind gesture can make a difference in a life."
Thank you for your simple words and kind gestures.
I love that quote too and should have added it!
DeleteOh, Joanne, I have no idea what kind of battle you have each day. I can't even imagine. I couldn't imagine being a mother was this hard, and he's only 2 months old and is not mobile yet. As challenging of a read as this was, I did find some happiness in the pictures of Scotty having such a great time being a vampire. I'm sure he is the best Vampire our old childhood street has ever seen. There's a lot of joy in his child-like spirit and smile. I love that boy. And you're the best mom he could ever have. Like he is God's gift to you, you are definitely God's gift to him.
ReplyDeleteVery true sweetie!
DeleteThere's struggle and there's mixed-emotions and there's second-guessing what may have been said or done. And that weighs on you heavily.
ReplyDeleteThen you look at the expression in your first picture. That wide-open mouth that takes form when your angel's attempted smile is too big to fit on his face, and you realize that - in the moment - everything is perfect. Being a parent (or a brother) of an angel means experiencing the lowest of lows as well as the highest of highs, rather than a steady middle. You need to embrace and cherish those highs, because it helps to tolerate the lows.
I try hard everyday to find moments in which to be grateful and hold them tightly when times are tough. Thank you so much for your insights. Did you catch my blog last week...Perks of Being a Wildflower? I quoted you:)
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