Just finished being interviewed by Darren Humphries and Paul Boon, two AngelDads, for AReal Life Stories From the Journey. I was humbled that these two men I admire would even consider me for the show. We talked of the early days of Scotty's life and misdiagnoses. We spoke of the day when Angelman Syndrome became a permanent fixture in our lives. Throughout the interview there were laughs, nods of admission and confirmation, and some tears as well.
https://youtu.be/_nyclkKUXaQ
This journey that each AngelParent is on is not a tale of gooey gooey gum drops and sugar coated unicorns flying in on a rainbow. It is a tale of exhaustion, seizures, hundreds NO thousands of doctor visits and hospital stays, poop parties, and endless fighting. Endless fighting you say? Yes, fighting systems. Every system you can imagine, we fight. We fight to get proper meds to control seizures. We fight to get the best appropriate education. We fight against ignorance in every area of our lives. We fight loneliness and depression. We fight the feelings of defeat. Finally, for me I fight with the inner voices of self pity vs. strength.
Once the camera was turned off, Darren, Paul, and I continued to talk about this journey. I started to share with these two amazing men the reason why I no longer hate AS or my life. As a young girl I volunteered in our high school's special education classroom. It was a self contained classroom of students with different abilities. My task was to assist them with their assignments. I spent a lot of time in room 112 with these fellow students of mine, and we became friends. My new friends were not included in the general student population except for lunch. Many students would use the "R" word in their presence. I never backed down from telling others to SHUT IT. At a young age I was aware that each person is to be treated with the same amount of respect, love, and acceptance that we all desire. Ability should not be a factor in how one is treated or mistreated.
I shared with Darren and Paul how I would pray at night in my bed with tears dripping a prayer of request. I prayed that if God had any children with different abilities waiting to be born to please send one to me. I remember telling God that I can do it. I can do this. I prayed that one day I can prove to God that I would be an amazing mom to a child like them. So when I have a pity party of "OH my life is so hard". Why does Scotty have Angelman Syndrome? Why do we struggle so? I remember that prayer. I have no right to hate AS. I have no right to hate my husband or this life. I prayed Scotty into my life. I prayed for this life. God does answer prayers. Scotty is proof.
https://youtu.be/_nyclkKUXaQ
This journey that each AngelParent is on is not a tale of gooey gooey gum drops and sugar coated unicorns flying in on a rainbow. It is a tale of exhaustion, seizures, hundreds NO thousands of doctor visits and hospital stays, poop parties, and endless fighting. Endless fighting you say? Yes, fighting systems. Every system you can imagine, we fight. We fight to get proper meds to control seizures. We fight to get the best appropriate education. We fight against ignorance in every area of our lives. We fight loneliness and depression. We fight the feelings of defeat. Finally, for me I fight with the inner voices of self pity vs. strength.
Once the camera was turned off, Darren, Paul, and I continued to talk about this journey. I started to share with these two amazing men the reason why I no longer hate AS or my life. As a young girl I volunteered in our high school's special education classroom. It was a self contained classroom of students with different abilities. My task was to assist them with their assignments. I spent a lot of time in room 112 with these fellow students of mine, and we became friends. My new friends were not included in the general student population except for lunch. Many students would use the "R" word in their presence. I never backed down from telling others to SHUT IT. At a young age I was aware that each person is to be treated with the same amount of respect, love, and acceptance that we all desire. Ability should not be a factor in how one is treated or mistreated.
I shared with Darren and Paul how I would pray at night in my bed with tears dripping a prayer of request. I prayed that if God had any children with different abilities waiting to be born to please send one to me. I remember telling God that I can do it. I can do this. I prayed that one day I can prove to God that I would be an amazing mom to a child like them. So when I have a pity party of "OH my life is so hard". Why does Scotty have Angelman Syndrome? Why do we struggle so? I remember that prayer. I have no right to hate AS. I have no right to hate my husband or this life. I prayed Scotty into my life. I prayed for this life. God does answer prayers. Scotty is proof.
