Friday, July 6, 2012

3 Years - About a Girl

This post has been a long time coming. I've told bits and pieces of this story, but I think its time to tell the whole thing, since I've passed the half way mark. 
Three years ago this Monday, July 9th,  I was given 5 years to live, and a little girl was born. 

I knew I was really sick, but I didn't realize how much so. We where in Salt Lake waiting for my second open heart surgery (5th heart surgery all together). It was suppose to be the next day, but that morning I got the call from Primary Children's Medical Center saying they moved my surgery date. All because I hadn't had my pre-op testing, which no one told me I needed or when to get it. So I was angry. 

My mom, brother and I got in the car and went down to get the pre-op testing done. It started with blood work and they popped a vein. I then went to talk to the surgeon. He was a complete jackass, and I told him so. Read about that experience here.

Ramona at the park

All the while, a family I never even heard from was having there baby girl, Ramona. 
I got 2 echos and was met by a cardiologist. She told me that I was in severe heart failure and could drop dead any minute. She then proceeded to tell me without surgery I only had 5 years to live, and they would no longer do the surgery. In the long run it was a good thing, but at first I was upset. I was angry. I felt like everyone was giving up on me and I would die. I decided that if everyone was giving up on me, I would too. 

But then I got to the hotel and logged onto facebook to find I had a message. A man named Rudy, he found me on some CHD group, and had questions. You see his daughter Ramona was just born, with my same defect. It was then I realized I couldn't give up! I had to fight, and survive to show Ramona, and others, that their life can be amazing!

I followed Ramona's story closely and found out my surgery would be down at the hospital she was born at. Later I found out we would have the same surgeon. The man who would touch my heart, would touch hers too.

the first time I met Ramona in person

I didn't get the chance to meet Ramona before surgery, but I decided to come back to the hospital for my 1 year heart surgery anniversary. So in early July, shortly after Ramona's first birthday we finally got to meet. At starbucks. Me and her mom Vanessa got along great and she even let me hold the girl who in a way, saved my life. 

My mom and Ramona

My mom came with and fell in love with Ramona instantly. She was a sweet little girl who was willing to be held by everyone. She smiled and just played around while we talked. She even tried to eat my moms necklace.

me and Ramona at the park

We decided to do a picnic in the park the next day for CHD families. I was excited to meet tall the families, these kids mean everything to me. They let me know I'm not alone, and I do what I do for them. But I was excited to see this special little girl again.

I even got to take her on her very first slide ride.

Me, Brayden (TOF) and Ramona
Me and Jethro (Ebstiens Anomoly and Pulmonary Atresia)
Me and Angel Seth's family (Seth passed from HLHS)

I met 4 amazing heart families that trip (plus many more throughout the years) and it was all because Ramona made me not give up. She is a hero to me. I said goodbye and went home. I still followed her story closely and sent her gifts. And in February of 2012 I got to see her again. I decided to come home through Spokane after baby Adam's celebration of life. 

So we met up for breakfast. It was a really quick visit but I was glad to be able to see her again.

Me and her mommy talked and she played with her toys and even ate! The first visit she had a Gtube so I was so proud to see her eating. 

She was a little ball of energy playing under the table and talking. So different from the baby girl I held who hated grass and was only scooting around. We took so many pictures, cause she told me too. All the while her mom was telling me how she had a cath coming up in preparation for her fontan.

I love this girl so much, and am proud to see how great she is growing up.
She has a great personality. And we had to take so many pictures cause she wouldn't look. This was the only one we could get of her looking and smiling!

I love this girl, and her family. Her mom Vanessa and her dad Rudy though we haven't met yet because he's always working. Even her baby sister Ofelia.  This family, and this little girl will always have a very special place in my heart. They saved me. 
They weren't the first heart family I met, but they reached out at just the right time.  Rudy didn't know it when he was messaging me, but I needed a reason to go on. And showing Ramona, and all the other kids, there is hope, was my reason. 

I love all my heart brothers and sisters. But this girl is special. 

I just want to let you know Ramona came through her cath and fontan with flying colorings!
Ramona at home after the fontan with the gift I sent her

Thank you for letting me be a part of your life baby girl, even if it's just from a distance most of the time. 
I love you. Thank you.