Thursday, February 3, 2011

Cast of Characters

Meet my family, otherwise known as my cast of characters.  First, there is my husband, the love of my life, the man who keeps me sane, is my rock, and makes me happy.  We will call him the Mad Scientist.  We met in 2003, fell in love immediately and haven't looked back since.

In 2006, we welcomed our first born, TRex.  He is the most lovable boy, constantly giving us hugs and kisses.  He loves books, he asks lots of questions, and creatures are his thing.  It started as a fascination of all things animal as a baby.  One of his first words was "flamingo".  Then he discovered dinosaurs.  He loves them, but feels he has learned all there is (because he pretty much has learned all there is in the age-appropriate books), so he moved onto sharks and other sea creatures.  He has a vivid imagination and loves movies.  He is not happy until he can recite an entire movie from start to finish.  If only we could get him to channel those energies to learning to write or cleaning up his toys.

In 2008, our daughter, the Dancing Queen, was born.  She is a handful.  She is stubborn and knows what she wants and that is what she going to do.  The only thing in her way is her body.  As she gets older, she is teaching herself ways to get around the limitations inherent in her physical being.  Her favorite things are music, dancing, hugs, and characters.  She loves characters!  Her favorites right now are Mickey and Minnie and the entire Disney gang.  She can sit still for at least 15 minutes playing with her characters and that is a lot for a little girl who is constantly on the go.  She has to be moving at all times.  I've seen her laying in a hospital bed, not able to get up, but still dancing.  (Yes, she has proven that you can dance laying down.)  Alas, the Dancing Queen was born with a micro-deletion of chromosome 22q11.2, otherwise known as DiGeorge's Syndrome.  That itty bitty missing piece of genetic code has caused serious, life-threatening manifestations in the Dancing Queen's anatomy.  She was born with severe congenital heart defects:  tetralogy of fallot with pulmonary atresia, an abnormal tricuspid valve, and pulmonary vascular disease (hypoplastic pulmonary arteries) amongst other defects.  She has a week immune system, lots of GI problems, and other issues.  The Dancing Queen doesn't let any of it stop her.  She is about to be 3, yet is the size of a 13 month old, so when she needs to get to something on a couch or a bed, she grabs her stool and climbs up.  Strangers are regularly amazed by the Dancing Queen because they think she is a prodigy baby due to her petite size.  She is bold and tries most things at least once, even if it is difficult.  I think having spent about 6 months of her life in the hospital has taught her to accept things and go with the flow.  Our lives have pretty much revolved around the Dancing Queen's health since she was diagnosed in utero.  She definitely adds complication, but it is so worth it.  She has also taught us to enjoy every moment and savor every hug.  We've learned that there are no guarantees in this world.  You have to make the most of what you have got.  The Dancing Queen is our daily reminder that life is the most precious gift.

Rounding out the cast of characters are Ma and Papa, my parents.  Ma is the craziest woman you will ever meet (not crazy in the padded room kinda way, but crazy in a Ma kinda way, can't explain it).  Seriously, she is proud of the fact that she has been cutoff at a bar when she wasn't drinking.  My dad counterbalances her craziness.  They regularly help us with the craziness that is our life.  Without them, I would have fallen off of the tightrope long ago.  They keep us sane.  It never ceases to amaze me that as a mom myself, I still long for my mommy some days.  And she is there.

Then you have the out-of-staters, my sister, the Editor, and her husband, Car Guy.  They have the best boys, Little Car Guy and the Chef.  They live too far away to be around often, but they come when they can and make our lives so much better.  To tell you how much my sister rocks, she has taken one week of her vacation time each of the last three years to help us while the Dancing Queen was having surgery.  Instead of vacationing or catching up on sleep, she has chosen to watch TRex and make sure he was taken care of, while being a rock for me and the Mad Scientist, during the hardest points in our life.  She is amazing.  She drives through the night to help out.  She comes for weekends just to have fun.  And, she makes the most delicious and fabulous looking cakes.

1 comment:

  1. Thank you for the introductions! Can't wait to hear more.


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.
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