I've been meaning to write a post after reading a fellow angel parent's blog. He captured so well what we go through as parents of children with Angelman Syndrome. Although our angels are happy most of the time, we live with much more than just the happy demeanor.
Regie Hamm's blog post is titled "How's Your Daughter?" and I highly encourage you to read it. You can view it by clicking on the title of the blog post above.
I think people mean well when they ask us questions, but I often think the questions come from not knowing what to say. Regie gets "How's your daughter?" frequently, but the phrase that gets me the most is "Noel got so tall." The reason it bothers me is because she didn't get tall. She is at the very bottom of the height spectrum for her age. She has two cousins that are exactly the same age as her that tower over her.
So why do people say Noel has gotten tall when she hasn't. Probably because her mind and actions are that of an infant. They expect her subconsciously to be smaller in size like a little kid because she acts younger. She's 11 years old.
One thing that really jumped out at me was when Regie began describing what it is to care for an angel that others really don't think about. It is a 24 hour job. You must always be on high alert, never resting for a moment. Otherwise, your angel is going to grab something dangerous. Something as simple as a bottle cap that she removed from a bottle a family member left behind in the house where she can reach it. I won't even begin to tell you the amount of items I have fetched out of Noel's feces. It is only by the grace of God she survived eating those.
Regie is blessed to have a wife to share the responsibilities of raising their angel. I don't have that. He speaks of being mentally and physically exhausted. I can relate. I don't get a break except for when Noel is healthy enough to attend school. She actually has a medical exemption from school because her constant strange illnesses and doctor appointments make it impossible to meet the attendance requirements.
I feel very blessed in that it was easy for me to accept Noel's diagnosis from the very beginning. I don't feel mental exhaustion with Noel (my teenager gives me that), but she is physically exhausting. She is getting heavy to put in the car, go up and down the stairs, etc. because she doesn't help and she even leans in a way that almost makes me fall over often. I actually say a prayer of Thanks to God every single time I get to the top of the stairs safely (and no, I can't put a chair lift on the stairs as my walls are made out of plaster). Then there is the no sleep thing. Noel doesn't believe in sleep. She thinks it is for wimps. That is perhaps the hardest part of Angelman Syndrome for me.
I'm not sure what the right thing would be to say to someone with a child like Noel. I love my life and I love Noel and I couldn't imagine living any other way. I think maybe we as parents just want other parents to understand; to have a glimpse at what life is like for us. I try not to dwell on the things I'll never be able to do, like go to the beach and read a book while my kids play in the ocean, but rather on the things I can do, like go to Florida to visit family.