Monday, May 23, 2011


We picnicked this weekend.  Ellie attended her first Down syndrome event on Saturday, where she was able to meet other kids with extra chromosomes, and we got to meet their parents.  Ellie also met a giant python or boa constrictor or some other kind of snake in the petting zoo.  (My snake knowledge is limited.  I only know two categories of snake: "big and scary" and "little and scary.")  I was 99 percent certain that the snake was looking at Ellie's chunky little cheeks and thinking about lunch.  The petting zoo lady offered reassurance, but I thought she looked sketchy, given that she was holding a giant evil killer snake.

Good news: Ellie survived.  And I didn't have a heart attack.  I didn't take any pictures of the snake, because I was busy fearing for my life. (In case you were wondering, I also lived.  So did Matt.)

Ellie also attended her godbrother's second birthday party this weekend.  The party had a farm theme and Ellie saw some more animals.  Much like our trip to the zoo, she was unimpressed. 

Once we moved from outside to the party room, Ellie proved that she can party like a rockstar.  (Rockstars sleep through parties in their strollers, then eat, then sleep some more in Daddy's arms, right?)

(Don't interrupt my nap.)

Sleepy or not, the girl was dressed for party success!  She even had an outfit change.

With the weekend's parties involving both 46- and 47-chromosomed children, "the future" was a topic of frequent thought.  Ellie is doing well.  She can lift her head up for short periods of time, roll front to back occasionally, roll back to front on an angle, coo, make baby noises, and grab for toys.  She recovered from surgery with amazing speed.  She is beautiful and sweet and funny.  She is demanding at times, a brilliant manipulator, and strong-willed.  She is a delightful child.

When you have a child diagnosed with Down syndrome prenatally, you change dreams quickly.  Before Ellie's diagnosis, I wanted to raise a child who would love God and love people.  I wanted to raise a child who would play well with our family, who would laugh, who would be successful.  I wanted to raise a child who would be beautiful and smart, who would able to achieve his or her dreams.  I wanted to raise a child who could go to any college he or she chose, any graduate program, and get any job.  I wanted to raise a Nobel prize winner, a superstar, an athlete.  I wanted to raise a child who would find someone wonderful to marry.

We all have those unspoken, mostly insane dreams.  We don't really articulate every dream, because we might recognize that they are a bit much.  (Wait, you think winning Olympic medals while enrolled in med school and law school and writing a novel simultaneously is an unrealistic schedule?  Not for my unborn child.)  Most parents slowly recognize their child's strengths and weaknesses.  When your child has Down syndrome, you get a list of weaknesses.  Health.  Cognition.  Gross motor.  Fine motor.  Speech.  Expressive language.  You get the list before you get the baby.

After Ellie's diagnosis, I changed dreams.  I wanted a healthy child.  In some ways, that dream has come true.  She is thriving.  In other ways, I have to wait a few months on that dream, until her heart surgery is done.  I gave up dreams I never even realized I was dreaming, such as graduate school for my baby.  When you get a prenatal diagnosis, sometimes you feel like the world is telling you to quit dreaming.

I'm readjusting and reclaiming my dreams.  Ellie loves people, so that dream is intact.  I believe she will love God.  (She was very awake and attentive in church this weekend!)  She will go to school and find a job.  I believe she will find a nice man to marry, once Matt lets her start dating at the tender age of 40.  Our family can continue our active lifestyle.  I ran over three miles this weekend, slowly regaining some of my previous running strength.  We will work with Ellie so that she can be independent, and I'm sure we'll cry when she moves out to try her independence.

Sometimes, I have to fight to keep dreaming.

(Bright Ray of Light.)

I read stories about kids with Down syndrome being crowned Prom King and Queen.  I see kids who are happy and socially competent.  I hold my little girl and tell her that she has a little something extra in her genetic makeup, so she has a little extra to give others.  The most important dreams don't change.  I want Ellie to be giving, compassionate, and loving.  Her name means "bright ray of light."

My dream is that she'll live up to her name.
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  1. Very well said. We did not have a prenatal diagnosis, but I had a lot of the same thought after my daughter was diagnosed at birth. And some days I still have to remind myself of these things.

  2. I'm with Jennifer - also no prenatal diagnosis, but knowing that Samantha would be our only child, I also thought I had to give up those dreams. My dreams for her have shifted a tiny bit, but I know that anything is possible.

    If Ellie's photos are anything to go by, I think she's already living up to her name in a big way! Still sad not to meet her on Saturday... :-(

  3. Oh, she is a bright ray of light! I love her. :)


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