More then a holiday

Father's Day has many reasons to different people. It's a day to thank you father for being there, being supportive, loving, and for teaching you those lessons that do not come easy for a parent.

For loss parents it has a whole new meaning.

A day to celebrate being a dad..but what if your child isn't with you anymore? It's a very painful reminder of what you have lost and what you will never be able to celebrate with that child anymore.
My husband deals with his grief in a totally different way then me but I know that he feels those same painful emotions on days like this.

That is part of why I wanted today to be the day we revealed the gender of our third child. Our rainbow baby. I didn't want to overshadow Corbin's memory, but instead to include him in our special occasion. It felt like our whole family was here to share the excitement and joy. I know he was there.

This day has been long awaited. Many, many heartfelt prayers have been said, tears have been shed, and our hearts have broken with each negative pregnancy test. We feared that maybe...we weren't able to have another child. That Monkey would be our child to hold, and Corbin our child to hold in memory. I cried with disbelief when I saw the positive pregnancy test, and I cried today when our child's gender was revealed. Not out of sadness or disappointment, but out of pure disbelief and awe that it was really happening.

It's a very conflicting be so full of joy for this new life, but hesitant to celebrate too much based on the fear and knowledge of what could go wrong. We do not dwell on those fears, but we do not ignore them either. We cannot ignore the knowledge that we have gained from Corbin. It was a painful lesson, but one I will never forget or be regretful for.

We were joined by family and close friends for our celebration, and thankfully my brother and parents were able to watch through video chat.

There was pink and blue lemonade...

I was so thankful that my brother and parents were able to video chat in and see the whole thing!

Monkey was excited to see his uncle.

All guests voted and we also took an online vote to include our dear friends that couldn't attend. It was fun to see how many participated and who stuck around, waiting for the results! We also had everyone write down what they thought we should name the new baby. 

We represented Corbin with his footprint box and the little lamb that kept him company in the hospital.

After we voted on boy or girl and names, we went outside for the balloon reveal.

I was calm and relaxed till the moment I saw the box, then I had a little freak out moment before I was able to go outside and actually look. 

 Here I am trying not to hyperventilate! 

Me about to hyperventilate...

...then breaking down into uncontrollable sobbing. I had to look and concentrate really hard on the balloons because I literally did not believe my eyes that they were pink!!

Watching as some of them flew to the skies to play with Corbin

It took me awhile to calm down before I came back out for the last picture. 

We're having a girl!!

Happy Father's Day to my husband. I really do not tell him as much as I should how much I love and appreciate him. I never thought I would be blessed with three children and I am SO happy that we have built this life together. Thank you baby for our life, our beautiful babies, and for staying with me through the hardest time of our lives. You are THE best and most wonderful father. I love you forever and always. 



Happy birthday to me!

Yesterday was my birthday. I'm a grand old 27 years old!

(Que groans from those thinking.."That's not old!")

It was one of the best I had ever had, not because of the surprise balloons and cake at work, or the sweet letters in the mail, or the over-100 birthday wishes online...but because we have been keeping a secret...

I had a feeling, pretty much from the very beginning that I was pregnant, but where we have been trying for over a year, I didn't want to get my hopes up. 

When I took the first home test and it said positive...I didn't really believe it. I did, but I also would not have been surprised if it was a mistake. So I didn't get excited.

A week later when I got the medically official test from the health department, I still wasn't excited. I was happy! But still...not getting my hopes up because in my mind I was saying "what if there's nothing really in there?".

A week after that I had my first doctor's appointment, just to make sure. I found a wonderful new office in Beckley that made me feel right at home. The midwife was a dream come true...she listened as I told her all about Corbin, then promptly made notes to schedule a fetal echo to check the heart and all the screenings and genetic tests to put my mind at ease.

Then she tried to find the heartbeat...

She didn't find it at first, but when she tried a different approach..there it was...a clear as a bell and as strong as I was praying for! 

We couldn't be happier!

We spent 3.5 hours making an announcement video only to have it rejected by youtube and facebook (boo) for a copyrighted song, but I love the video the way it is and I'm not changing the song, so as soon as I figure out how to share it...

CHD Awareness Year!

February 7-14th is Congenital Heart Defect Awareness Week. 

But it is also:
Have a Heart for A Chained Dog Week and
Risk Awareness Week.

Today is also Valentine's Day, which you knew, but did you know it is also:

Ferris Wheel Day
Organ Donor Day
Day of Action
Creme-filled Chocolates Day
Have-a-Heart Day
International Quirky Alone Day
Frederick Douglas Day
Pet Theft Awareness Day
Library Lovers Day
Race Relations Day
Condom Awareness Day
Women's Heart Day
Singles Awareness Day
World Marriage Day
League of Women Voters Day

Really? Now I know most of you have probably never heard of most of these days; I haven't, but that is a lot of competition!
That is why I am asking everyone to make EVERY month, EVERY week congenital heart defect awareness time. I'm not asking for a parade every week for CHD, but for us to take the ROAR we make during CHD week down to a RUMBLE that lasts all year!

I know CHD week is a huge time in the heart community, and I applaud the work each and every heart mom puts into this week. Whether you are simply sharing every CHD fact you see, or if you are out there going door to door with heart shaped cookies and a pamphlet; you are helping. 

CHD week has been a huge success this year and I'm so happy for that. I have seen a lot of sharing and reaching out to those who haven't heard of CHD before. The photo challenge through The Corbin Story was a great success and something I plan to continue for years to come. 

Let's keep it going! Keep your advocate voice at a consistent rumble and I just know CHD week will soon be a worldwide-known term.

Here is a recap of our CHD week photo challenge:

First post of #CHDweek
My #angel, Corbin Walker Caruthers. 
He was born with Williams Syndrome that caused many#heartdefects
After three heart surgeries, it was too much for his little heart and he passed May 17th, 2011. 
He is the passionbehind Corbin's Bill and why I do what I do every day.

Red is the color for #chd awareness but also my color for Corbin. 
This is a balloon release we had in DC while I was with Baby's First Test. 
One of my favorite shots.

to speak or write in favor of; 
support or urge by argument; recommend publicly. 
2. A person who speaks or writes in support or defense of a person, cause, etc.
3. A person who pleads for or in behalf of another. 
I am an advocate. I will forever be an advocate because of my son. 
You cannot sway my purpose or squash my passion. 
I will always advocate for newborns, for their health, their well being, and their safety. 
I do this to honor my son. To keep his legacy alive.
I will not stop. I will not be silenced. I do this #forcorbin.

Corbin's first heart surgery took 8 hours. 
I wasn't worried one bit, the entire 8 hours, until they called and 
said they were bringing him back to the PICU. THEN I got worried. 
That is also when we heard William's Syndrome for the first time. 
Two weeks later we had an official diagnosis.
This is what his room looked like right after surgery. There are 15 medicine dispensers. 
I was forewarned it would be overwhelming. My first thought was it looked like the deck of a spaceship. Thankfully he recovered very well from that surgery.#1in100 #thecorbinstory #forcorbin

The probe on baby Sally's foot is a pulse oximeter. 
After Corbin passed, I realized how vital pulse ox screening is. 
I wasted no time in starting Corbin's Bill with help from some wonderful heart moms 
(Hi Kathy and Michelle!). Pulse ox is a proven method for heart defect
screening and saving lives! Why would you deny a PAINLESS, 
two minute, bandaid-with-a-light on it, screening?!
#1in100 babies are born with a heart defect and pulse ox can detect them. Enough said.

This is Dr. Gus, Corbin's "baby heart doctor" as my dad likes to say. Even though he couldn't save Corbin, I have nothing but love and respect for him. He would always walk very quietly into the room, gently touch Corbin on the chest or hand, look at his numbers, then leave without a word. If you didn't have any questions, he would leave, but if you did, he would answer them very well and slowly so you could understand. The first time we met him, my husband was afraid he shook his hand too hard because "those are the hands that could save Corbin". A #nurse I want to mention is Christy. She became part of the family and I will NEVER forget the look on her face when we were told Corbin's heart had stopped. She was the one that always had a smile and a hug for us. I will always cherish the friendship and love she showed us those three months. These are my two favorite people from Ruby Memorial. #1in100#thecorbinstory

Most have no known cause. Some are caused by random genetic disorders 
like Williams Syndrome or DiGeorge Syndrome.
Both are reasons to have your baby's heart checked at your 20 week
scan AND to ask about your#pulseox screen after birth. 
Did you know sometimes a CHD forms before you even know 
you are pregnant?? #education and#awareness is vital. CHD can
affect anyone- share and be aware of the most common birth defect. #1in100 #thecorbinstory

CHD Week begins!

Here we go! CDH Week starts today and I have created this photo challenge to help everyone spread awareness and connect us all at the same time. 

If you have never done a photo challenge before, don't worry, it's easy!

1.Simply follow each day's photo prompts by taking a photo of something that the word makes you think of.
2.Upload it to Facebook, Twitter, Instagram, Pinterest, Google+, etc...
3.Add the hash tags at the end of your post. This allows others to look up that hash tag and see what everyone has posted. Plus it helps me see how many people participated :)

I will add, if you plan on uploading pictures of your warrior/angel from when they had heart surgery, please, please, please do not forget a watermark! Especially if you know that photo will be shared. I explain why here

*This is a Corbin Story original creation. DO NOT alter or claim as your own. Thanks!*

Here is my first post:
My heart angel Corbin. He was born with Williams Syndrome that caused many #heartdefects. After three heart surgeries, it was too much for his little heart and he passed May 17th, 2011. He is the passion behind Corbin's Bill and why I do what I do every day. This is the first post of the #chdweek photo challenge!#1in100 #thecorbinstory #forcorbin

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. 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. "

Twitter: @HuntersHopeFDN

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."

Twitter: trisomy18