Saturday, February 16, 2013

Dragon Mom

Dragon Mom.


Am I a Dragon Mom?

I heard the term "Dragon Mom" for the first time almost a year and a half ago when I read a poignant op-ed in the New York Times by Emily Rapp.  A Dragon Mom is quite the opposite of a Tiger Mom; she is the mom to a child who will die young and she knows it.  There is no stopping the inevitable, so parenting becomes more about sharing love, smiles, and now, rather than creating building blocks for long-term success.

When I read the op-ed, it stuck with me.  I had of course heard of Amy Chua’s “Battle Hymn of the Tiger Mother” and read articles about it. But I knew that wasn't me.  I knew then that I was more closely aligned with the Dragon Moms than I was to any Tiger Mom.  I even wrote about how I was not a Tiger Mom in a January 2012 post right here on this blog.

But, I clearly remember writing that blog post and thinking "should I add in my thoughts on where I fit as a Dragon Mom?"  The problem was that I felt an affinity to what the Dragon Mom was saying and feeling, but I still had plans for the Dancing Queen. I was still holding out hope that DQ would have a future. I felt conflicted at that time about not wanting to be in either world. In the end, I only wrote about not being a Tiger Mom. I took the easy way out by ignoring the giant elephant in the room.

I realize now that didn't write about Dragon Moms then because I was protecting myself.  I didn't want to admit out loud that part of me associated very closely with being a Dragon Mom.  I mean, how could I think my daughter won't make it to adulthood?!? How could I give up on my sweet baby? How could I not fight with every ounce to get her to adulthood? Wasn't I told all of the time how far medicine has come!?! Isn't my job to do everything in my power to keep her alive into adulthood!!! If I admitted that part of me felt like a Dragon Mom, wasn't I saying that I didn't believe my daughter could ever grow up?!?

And now we've been told that the Dancing Queen will not make it to adulthood.  She won't grow up.

Does that mean I should become a full-on Dragon Mom? How do I know what to do? None of the doctors can tell me what to expect. Does she have a year? Two? Five? Nobody knows how quickly she will decline.  All they know is she will decline and that she won't live to be an adult. The Dancing Queen still has to be around other people. She will still go to school.  I can't let her do whatever she wants and become a brat.  It is hard enough on her now thinking that no kids want to play with her because she can't keep up.  And I can't very well let her eat whatever she wants for dinner either--that can cause her to decline more quickly and be in frequent pain. 

How can I help her enjoy life as much as possible and live every moment to the fullest while still letting her be part of society?  Where is the proper middle ground? How do I know what is best? Where's my self-help book--Raising Your Terminally Ill Pre-Schooler?

Fuck it all! I don't want to be a Dragon Mom!

Thursday, February 7, 2013

Is this my life?

I walked into the garage Tuesday morning and TRex and the Dancing Queen were fighting. DQ insisted the Mickey was going to die on Wednesday. His heart was sick and the doctors had nothing more they could do, so Mickey was going to die.  DQ was devastated.  TRex was fighting with her, telling her "NO! Mickey is not going to die. The doctors keep researching and they are going to find a cure. You're wrong DQ. You can't be sad. Mickey will not die tomorrow!"

This morning, I had the following conversation with DQ:
Mommy, I'm sad.  People have been hurting my feelings and I feel sad.

"What have people done, Dancing Queen?"

They hurt my feelings, Mommy.

"How did they hurt your feelings?"

They said I'm going to die. And not die as adult like everybody else. They said I'm going to die as a kid.

"Who said that DQ?"

I don't know, Mommy, but it hurt my feelings.  I'm very sad. I don't want to die.

How can I explain life and death to an almost 5 year old and a 6.5 year old? Why should I have to help my daughter understand when the doctors tell us that they are going to do nothing more to help her feel better; that they're not going to fix her heart; that they don't know what to do?

Monday night, that is exactly what we were told.  DQ's heart will continue to go into worse heart failure and the doctors do not know how to make it better. They don't know how to save her. They know she won't grow to be an adult.

TRex was with me when I learned this news. He heard it all. We had to explain to the kids before we could comprehend everything. Why should I ever have to explain this?!?

I hate congenital heart defects!
Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
Related Posts Plugin for WordPress, Blogger...