Sunday, October 16, 2011

Dragon Mom

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.

Saturday, October 8, 2011

Not much happening

Once again, I apologize for not posting sooner.  This time I can blame our computer monitor.  It’s never a good sign when you go to turn on your computer, then smell something funky, then see smoke coming from your monitor that keeps blinking on and off.  Needless to say, our monitor went kaput.  Thankfully our friends let us borrow an extra one they had, so we’re back on track and I can finally update this blog.

Things are going well.  Ella is doing well in school and still loves going each day.  Each morning as she’s getting ready she tells me how Mrs. Bull is going to love something she’s wearing.  Tuesday is was, “Mommy, I think Mrs. Bull is really going to love my Mickey shirt.”  Thursday she said, “Mommy, I think Mrs. Bull is really going to love my braid [in my hair].”  And Friday she said, “Mommy, I think Mrs. Bull is really going to like my One Fish, Two Fish, Red Fish, Blue Fish shirt.”

Music class is also going well.  I know about 1/3 of the kids names, so I’m making progress.  And I think I’ve found some songs that the kids enjoy.  Of course now that I’m finally getting used to all of this I have to start planning the Christmas program and choosing Christmas songs.  Why can’t every class just sing “Away in a Manger?”

Grammy Janet came to visit last weekend and we all had a lot of fun with her.  I won't mention anything about how she and I went to Moe's for lunch and completely stuffed our faces.
We did learn about one of Ella's new tricks.  Each night when Ella goes to bed I pull her door closed so that Joe and I can be in our room or the computer room and not bother her.  Then before we go to bed I open her door so that I can hear her if she needs us.  For about a week I was getting really confused because I would go check on her in the middle of the night and her door would be closed.  I'd open it, assuming I had just forgotten, and in the morning it would be closed again.  I wrote all of this off as a) a random gust of wind from her fan or b) I was losing my mind.  One night I opened her door and said to myself, "Katie, you just opened her door...remember that."  The next morning her door was closed again.  Finally I asked Ella if she was getting up and closing her door.

So here's where Stinkerella earned her sweet girl claims she can't climb up on her bed during the day (we didn't have a step stool for her).  She won't even climb down in the morning and waits until someone comes to get her (she claims it hurts).  However, in the middle of the night when she would wake up and see that her door was open she would climb down her bed, close her door, then step on her stuffed animals to climb back in bed and go to sleep.  Grammy and I went out and got her a little step stool so now she doesn't have to use her animals to climb back into bed.

She's such a sneaky girl!  The good news is that I can be sneaky too and every night I purposefully leave her door open so that she'll get the exercise of getting in and out of bed to close it.

Not much else is happening around the Murray house, so this post is pretty boring.  I just didn’t want you to think we had forgotten about you.