Sunday, October 16, 2011
I’ve never heard the term “Dragon Mom.” Until today, I didn’t know that I was a “Dragon Mom.” A friend of mine posted this article on facebook: Notes from a Dragon Mom.
While our situation is not quite as dire as this one, there are many aspects of this article that I relate to.
We parent different than most people we know. Not better (in fact, in some cases, worse), just different. This is in part because of who we are…Joe and I fall in to the “chill” category of parenting. Certain things just don’t get us worked up. Bedtime was a loose issue in our house until Ella started preschool and had to be awake at a certain time. If we wanted to go to a dinner that didn’t get over until 11 pm, we went with Ella in tow. We took her to her first Major League baseball game at 2 months old. I took her on her first roller coaster last Christmas at 3 years old. These are things we would have done with any kid, EB or not, because that’s just who we are.
But we also parent differently because our child has a future unlike most others. We parent a child who, if statistics are correct, won’t live to see her 30th birthday. We parent a child who, statistically speaking, WILL get cancer…it’s almost inevitable. We parent a child who will most likely never have children. We parent a child who we’ve watched get progressively worse, and will continue to get worse until her body gives up. We are the unfortunate parents who will most likely be faced with the daunting task of planning our childs funeral.
All of that completely changes our parenting attitude. If Ella wants to eat chicken nuggets every meal for a week, then I give them to her. And yes, I often fix her a dinner different from what Joe and I are having, in spite of the fact that pre-Ella we swore we would never do that. I’m not overly concerned about the amount of TV she watches. We read a lot, color a lot, and play a lot of games together. Last year I saved every single item she brought home from preschool, and I am doing the same again this year. I have saved every piece of clothing Ella has ever worn, including items that we only used because she has EB. I NEVER leave the house without kissing her goodbye, and I go into her room and check on her each and every time I get out of bed at night…even at 3 am. I wake up each morning knowing that this could be the day things take a turn for the worse, but at the same time I pray that we have just a little bit more time.
Our perspective on life is different. We all know that we are not promised a tomorrow, but few people get the opportunity to actually LIVE like there’s no tomorrow. It’s a blessing and a curse. I wish we didn’t have to live this way, but I know that there are countless things we would have missed out on if we didn’t.