A Green Folder

Yesterday morning I was cleaning and organizing our office space.  I'm headed back to work in a couple of days after maternity leave.  David and my mom would be so proud.  You see, I don't throw anything away....

But, I found something, and it knocked the air out of me for a second.

A green folder

The tab said "Greenwood Genetics."  We have quite a few things that say Greenwood Genetics, so I didn't think much about it until I opened it.

Business cards, printed articles on PWS, a bound booklet titled "Reflections of Hope," and two pages that had been ripped out of a notebook with questions scribbled on them.

Everything in that folder took me back four years.  It took me back to the very first time David and I met with Greenwood Genetics Center before we received Ellie's diagnosis.  Clinically they believed that Ellie showed all signs that would point to a diagnosis of PWS.   We had been told to research/google both Prader-Willi syndrome and Angelman syndrome.  We were terrified, confused, and mainly numb.  On the way there we listened to a CD of songs.  Songs that were carefully selected and put on the CD, specifically for us by some of our best friends.  The drive was long and we didn't do much talking, but I do remember one thing - we came up with a list of questions and I scribbled them down on a notebook I had with me...

Behavior - can she go out?
Does Prader-Willi affect girls and boys differently?
Will she be able to interact in social settings?
Will she be loud and hard to handle?
What are the different doctors we will need to have Ellie see?
Will she constantly look for food?
Will this rule her life?

In that moment, I remembered what we were feeling.  We were scared.  We were sad.  We were nervous.  We were numb.  A LOT rode on the answers to those questions.  Some answers we were relieved with, and other answers cut us to our core.

As I looked at them yesterday, I realized - it is true how time heals.  My existence does not ride on the answers to those questions anymore.  In fact, I realized I don't even think about them hardly at all anymore.  Prader-Willi is a devastating diagnosis, but as soon as we decided to bring it to the light, educate others on the desperate need for research, find people and groups that get it, and share our story - that was only when our life took on a hopeful and positive trek. .

These questions are a huge part of our past, but they will not dictate our future.