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.

3 comments:

Ben and Lola said...

From my perspective, you are great parents. You do things with your child I didn't do with mine who were healthy. I think that I would try to keep Ella home and safe but you take her everywhere, do everything with her. She has not lacked for ANY experience. I certainly think that is commendable and I'm sure that's why God chose you two to be her parents. I'm sure He smiles when He sees her on the roller coaster, dancing to music, enjoying life. I would fall into the "chill" category of parenting as well. Pick your battles. I, for one, say "Hallelujah" to your parenting style.

Jason and Vanessa said...

I have been trying not to look through rose colored glasses during this adoption. I know all of the things you said are true in this blog post and I have been preparing myself know that all of these things are true but I know I have painted an unrealistic picture in my head at times. After I read what you wrote it hit me... this is not only your reality it will soon be ours.

I can't wait to adopt our boy and love him all the years God will give him but as I read this my heart broke into one million pieces knowing how much time I have wasted in my children's lives. I have wasted so much time it makes me sick. I pray I would never forget how I felt reading your post and I pray that I would make the most of every day with my kids.

I love you guys tell Ella that she is so special she makes me want to be a better Mom to my kids.

Vanessa

lscbydesign said...

Katie. This is so amazing and so true. Your faith, optimism and acceptance of the reality of God's "blessing" is palatable to all who know you both. I myself feel blessed to be a very small part of your community. (Won't call you strong, cause I know you hate it, but will secretly think it. :-)