Hello new friend...

Hello new friend. 

Welcome to my world. 
I'm sorry to tell you, I'm sorry you had to find out this way...we were just introduced today after all, but..

my baby died.

 It was almost three years ago now. I know that was the last thing you were expecting when you added me online. I know you were expecting to see a lot of kid pictures, maybe some party photos, a couple albums of past vacations, and the occasional Facebook rant about something that made me mad.
What you were not expecting to see was posts about heart defects, how they take more lives then all childhood cancers combined, how I continually ask for shares to spread awareness of the condition that took my child. Yes...my baby died and yes, I can talk about it. 

You see, I am very proud of my son. Did you know that your newborn was screened for heart defects because of my son? Did you know that time they took your child for a couple minutes to "run a test" that they were putting a pulse ox band on her tiny, newborn hand and foot, to test her oxygen levels?To see how much oxygen her little, newborn heart was getting; to make sure there wasn't a life threatening heart condition that might possible take her life. Like it did my son. 

Pulse ox. It can detect heart defects and yes, it is mandatory in this state because of my son and the advocacy work, I and others, did after his passing to make sure that no other mother had to live through a surprise diagnosis of heart defects. 

Even though this is my story and my reality...I'm sorry. I'm sorry there is no easy way to tell a new friend something so deep and personal about myself. I'm sorry that we just met and you showed me pictures of your beautiful new baby girl, and now I'm telling you my newborn died. I'm sorry I have to put this kind of information on you, but please don't feel sorry for me. Please believe me when I tell you I'm ok. It's been a very hard three years, but there have been very happy moments. 

The moment when we heard Corbin's Bill had passed.
The moment I read the email that said the bill was implemented state wide.
The moment I watched a newborn, in person, be screened and pass.
The moment I was told I was going to fly to the White House to share my story.
The moment I founded The Corbin Story Fund and signed that paper making it official. 
The moment I joined another local organization to offer a child loss support group.
The many, many moments I have been told how much Corbin has inspired others to make a difference, to help spread awareness, to tell another mom to ask for pulse ox on her newborn...

And especially...

The moment I was told Corbin's Bill has saved other babies. Oh the tears...knowing that even though my son isn't here anymore, that he is continuing to save lives.
So you see...I am ok. Despite my loss, I have many things to be happy about.

So, it's nice to meet you. I hope you stay around. 
This is my story.
This is my life.
I am Corbin's mama. 

Corbin Walker Caruthers
February 20th, 2011- May 17th, 2011.

Corbin goes to New York!

Earlier this week I had the opportunity to fly to New York for a newborn screening meeting with an organization called NYMAC; New York Mid-Atlantic Consortium on Genetic Services and Newborn Screening.
Yeah. Long name! 

They had invited me to represent WV and to present my "expertise" on pulse ox, passing the bill, and my knowledge about social media and the power it has for advocates like myself. I was so excited to share my knowledge and talk to others who are as passionate about newborn screening as I am.

I had to drive almost two hours to the airport then head to DC, then up to Albany. Both flights were smooth and not too much turbulence. The hotel was 5 minutes from the airport, and they provide a shuttle, which I really appreciated. Taxi fare can get pricey! 

The hotel was very warm and inviting with what I can only call a old British feel. Very cozy.

After I got settled in and the rest of our group arrived, we set off for dinner at P.F. Changs. It was my first time to the restaurant and I told the other advocates that every time I travel, I feel like such a small town girl! We don't have this at home!

Dinner was delicious! Sadly, at this point, I lost the rest of the pictures I took with my camera so I can't show you the amazing food I had, or the trip home. :(
But I will tell you, if you ever have the chance, stop by that place, it is so worth it!

During dinner, I got to meet my fellow work group members and talk more about my story. The woman sitting next to me had lost her son 11 years ago to Trisomy 18, and then started an organization to raise awareness of the disorder and help other families. 

To chat with others about my passion really warms my soul. I can feel Corbin's spirit there as I am advocating for him and his cause. This is what I am meant to do. This is what I want to do for the rest of my life and nothing would make me happier then to be able to do that!

Our meeting started early the next morning and lasted till late afternoon. We covered a lot of ground, got stuck in a confusing conversation for a bit, but then made a lot of progress once we got over that hurdle. Since we were all asked there to help NYMAC reach their audience better, I presented my project for spreading their social media impact and to work on more awareness of the organization and education about what they do. I can tell there is a lot of work to be done, but I am excited and willing to help!

Some more amazing people you should know:

Hunter's Hope 

"Hunter’s Hope was established in 1997 by Jim Kelly and his wife Jill, after their infant son, Hunter (2/14/97—8/5/05) was diagnosed with Krabbe Leukodystrophy, an inherited fatal nervous system disease. "

Website: www.huntershope.org
Twitter: @HuntersHopeFDN
Facebook: https://www.facebook.com/HuntersHope

Trisomy 18 Foundation

"Our Mission is to encourage the search for treatments and preventions of Trisomy 18, to educate and support medical professionals, and to create a caring worldwide community for affected families."

Website: www.trisomy18.org
Twitter: trisomy18
Facebook: http://www.facebook.com/trisomy18