The Decision: One Year Later

One year ago today, on December 21, 2011, I did something I said I would never do, I agreed to an amniocentesis. It was also on that day that I made the drastic realization that I would never again make another grand sweeping statement such as “I will never have an amnio” (although that itself is a pretty grand sweeping statement). How did I go from declaring I would never agree to an amniocentesis to confidently walking into the hospital on December 21^st for the scariest test of my life? Well, for that we have to go back a few years...

As you have probably noticed from past posts I enjoy analyzing how our life stories come to be. How one seemingly insignificant detail can shape the rest of your life. It’s what I call the Sliding Doors effect

For those of you who have not heard of the 1998 slightly boring Gwyneth Paltrow movie, Sliding Doors, here’s the main plot: the movie follows her life in two story lines – one story where she makes her train and the other where the doors slide close right in front of her therefore missing the train and changing her whole life’s outcome.

While the movie was subpar the concept was fascinating and I am forever finding Sliding Doors moments in my life and marveling in how a split second can change my life.

I met my best friend, future Matron of Honor and future Godmother to Connor, Lauren at a bus stop when we were 12 years old. Our friendship came easily as we quickly discovered we were the exact same person with the same likes and dislikes . . . especially in the very important tween area of celebrity crushes.

It was through Lauren I met the person who would ultimately help Nate and I make the toughest decision of our lives.

Erin was one of Lauren’s oldest friends from growing up. Erin did not live near us so I only heard stories about Erin until we finally met in person years later when she hosted (along with her wonderful mother) a fabulous bridal shower for Lauren. It was then I was able to see all the brilliant things Lauren was talking about. Over time, Erin and I continued to see each other at Lauren’s family events and with Facebook we too became dear friends.

When Lauren and I were both pregnant with our first child Erin announced she too was pregnant with child #4 and due one month after Connor.  A few months after announcing she was pregnant Erin followed up with the email I would later read and reread to give me strength and courage to send my own email. Erin’s email started out simple “Nick and I received the news that we are expecting a baby boy and that our boy has Down Syndrome.” My heart skipped a beat. My first thought was not “I’m sorry” or “poor Erin, how sad.” Instead, my very first thought was “wow, this little boy is incredibly blessed to be born into such a loving, strong, amazing family.”  And that is exactly what I told her. 

Over the past 2 years I have watched as Erin has created an amazing life for little Ben and all her children. Those two years of experience were very much needed when I finally gathered the strength to call Erin on December 16^th 2011 to talk about the abnormalities found at our 20-week appointment.

As I mentioned in my original post, I will not go into details but I will say that phone call shaped our future. My “I will never have an amnio” slowly started to fade as I listened to Erin tell her full story. It was Erin’s story that helped us make the decision to move forward with the amniocentesis.

During our conversation Erin mentioned something that has always stayed in the back of my mind. Erin, in all her spare time with four kids, volunteers at the hospital to talk with mothers who have a surprise diagnosis of Down Syndrome (I told you she was amazing).

She told me a story of a woman who had a little baby boy about 7 months after Ben was born. When she talked with this woman at the hospital the new mom asked “do you ever wish Ben did not have Down Syndrome?”

Erin said, “if Ben did not have Down Syndrome then he would not be Ben and you might as well give me another baby and I don’t want another baby so NO I do not wish Ben did not have Down Syndrome.”

As she told me this story I just started crying because I thought, “Erin is so great, what a great heart . . .but I will never get there. If the amnio tells us something is abnormal I will never get to the place where Erin is with Ben.”

And yet, it seemed I under estimated myself and little JD before I even met him. But that realization did not come until later.

One year ago today our amnio results came back “normal” meaning we were 99% in the clear for a genetic anomaly.

One year ago today I was rejoicing it was not a genetic syndrome.

One year ago today I stopped crying believing that our family’s future would not be lost.

One year ago today my heart was not as big as is it now. Just like the Grinch, JD has helped my heart grow to hold more love.

One year ago today I had no idea how my life would change over the next 12 months . . . and how that change would be the best gift I never asked for.

So if I could go back more than 2 decades to that day at the bus stop I would tell my 12 year-old self: Hold on tight to Lauren as a bestie your whole life. Not only will she be there for you through some of your best and worst times but she also holds the key to your most important Sliding Doors moment. Then I would say: Don’t pick the blue prom dress – seriously keep looking.  

Good-night friends

The Beginning: One Year Later

I’m a celebrationist. I love celebrating minor events with big excitement. Green milk and Lucky Charms on St. Patrick’s Day, a fabulous tea party for the Royal Wedding (big thanks to Aunt Katie/Nia for hosting that one) and don’t even get me started on the Olympics. Being a celebrationist also means reflecting on events from the past. It puts a smile on my face when I remember the Christmas season while living in the Gamma Phi house or seeing Nate walk into the party on the first night I met him.  With each year every date takes on a new meaning. 

On September 27, 2007 we closed on our first home. 

On August 11, 2011 Connor took his first step. 

On December 15, 2011 were told by doctors “we noticed a few abnormalities” at our 20-week ultrasound. 

Heading to our 20 week ultrasound (Apologies for this picture as I look horrible - no pregnancy glow here)

Each year every date takes on new meaning  . . . for better or worse.

As we wrote in the original introduction email to all our friends and family December 15, 2011 is a day we will never forget. On that day, we were pushed down a very long, dark, scary road with no direction just blind faith. Little by little that road became a tiny bit brighter and slightly less scary. I purposely did not reread our original post because I wanted my thoughts and feelings for 12/15/11 to be pure.

From what I remember Nate and I were scared. Extremely scared. That first day was such a shock we did not know where we would go from there. It did not seem real. I kept hoping everything would be fine. We had nothing to worry about. But deep down I felt it starting to bubble and I knew from those few words “noticed a few abnormalities” our lives were forever changed.

After attending Nate’s holiday party this past Thursday night it is still hard to believe we picked ourselves up to attend his party last year on the same day we received the news. In the hopes of not sounding annoying I am very proud of us. Some of our best friends were at the party with us that evening of December 15^th and yet they had no idea we had spent hours that afternoon crying. Earlier in the day my friend, who was also pregnant, had genetic testing with the doctor we would soon get to know very well. “The doctor said everything was fine and we have nothing to worry about.” As she spoke those words I just kept thinking “will we hear those same words from the same doctor when we meet with him next week?”

Above all, the hardest part of the day was being around Connor. My thoughts kept drifting back to him and wondering how this would change his future. I cried thinking I might not be able to provide the life he deserved. Looking back now I realize how silly my thoughts were but it was understandable. On the 15^th we knew there were potential challenges ahead but everything else remained a soon-to-be-uncovered mystery. It was quite overwhelming and scary.

 

I will never regret my feelings of sadness I felt on that first day (or any day after) because that is how people grow. Without those feelings I would never have known the glorious emotions I have experienced since seeing JD for the first time. As a celebrationist, these next few months will be very ceremonial as we remember where we were this time last year. (Yes, I will be writing blog posts about these special dates – sorry it’s what a celebrationist does). I don’t want to spoil the ending but I can say with 100% honesty if I had a chance to change anything or take away JD’s syndrome I would say “No, Thank You.” JD has added more experiences, joys, and love to our family than we would have ever predicted. On December 15, 2011, I could never imagine I would be blessed with the life I have now. That very long, dark, scary road is no longer dark or scary. It’s still very long but it is much brighter with unexplored opportunities ahead.

Sidenote: My friends think it is hilarious (and slightly ridiculous) that I am a self-proclaimed celebrationist. However, I think I have inspired a few more celebrationist in the group so it can’t be all bad.