The Eye Roll of Disbelief (31 for 21)

Down syndrome awareness month has brought my mind back to the day Hailey was born.  Before Hailey was born, the worst thing that had happened was my mom died at the young age of 26 and I was only 5.  It broke my heart, but unfortunately I was only 5 so I didn't have the maturity to fully grasp it all.  I couldn't understand it all.  However, when Hailey was born, I was 36 years old.  I understood everything.  When the neonatologist said, "Your daughter has physical characteristics that lead me to believe she has Down syndrome", I swear time stopped.  I felt like the Earth had stopped rotating on its axis.  At that moment, I thought our lives were over.  I can't describe how devastated I was.  On top of that, her lungs were bad.  They weren't fully developed and they were filled with "fluff" (yes, that was the doctor's term, not mine).  He told us she was critical for the first 24 hours.  Then he added that she could have a heart defect.  I couldn't breath.  I couldn't see through the tears in my eyes.

Have I told you lately what a great neonatologist we had?  He didn't sweep out of the room or paint a grim picture.  He asked if we had questions and I asked the famous "What do we do with her?" question.  He didn't smirk or look at me like I was stupid, he calmly responded, "You take her home, love her and feed her.  She is your baby first.  Take everything else as it comes." and then urged us not to google Down syndrome or get books from the library.  He gave us two websites and told us not to look at any others.  He stressed the importance of reading up to date, accurate information about Down syndrome.  He told us to not look an adult or even a 10 year old with Ds and say that will be our daughter.  He assured us that there were no limits to what she could do.  Dr W even shared with us that he once had a private practice and had several patients with Down syndrome.  He said that everyone of them said their life was better because of their child with Down syndrome and they wouldn't change it for anything in the world.  I got mad at him for that one.  I rolled my eyes (not sure if it was a mental eye roll or a physcial one).  I "knew" that wasn't true.  He was just saying that to make me feel better.

Immediately following our conversation, Jason wheeled me to the NICU to see Hailey.  We feared for her life.  When I looked at her, in my mind, everything was wrong.  Either that wasn't my baby or they were mistaken...there were no signs of Ds.  She was hooked up to so much.  She was so swollen.  This wasn't happening.  I couldn't do anything. I couldn't fix what had happened and what was happening to the life that I brought into the world.

In the days that followed, we were told lots of stories about children and adults with Down syndrome.  They were positive stories and the story teller always had a smile on his or her face and spoke with such love and admiration.  But I didn't want to hear those stories.  I didn't want anyone trying to make me feel better.  I truly believed I would fall asleep and wake to find it was all a dream or that I had the ability to hide under a rock away from everyone and every thing.  Nothing was ever going to be the same....our life would never be okay again.

It's truly sad that I didn't know more about Down syndrome then.  It is sad that I thought all of our lives were over.  Life is different than before Hailey was born, but it's not bad.  It has been enhanced. Everything looks different...we see things that we didn't see before.

It seems crazy...now when I talk to new moms with babies with Down syndrome, I'm the one gushing about my daughter with Down syndrome.  I'm the one saying how fabulous Hailey is.  How many people Hailey has touched.  I wonder how many eye rolls I get :-)