Friday, January 25, 2013

Swing from the Heart

The Weeden's started discussing with us a foundation and what we wanted to see happen. We always knew that we would like to raise money to help kids like Gavin.

The Children's Hospital at OU Medical Center is dear to our heart. It is where our son was born. The place we had Gavin's pre-natal care, multiple heart caths, neuro evaluations, labs, cardio appointments, a place where we experienced many emotions. We love OU Children's for so many reasons. The medical staff has always gone above and beyond to give the best care to our Gavin, even to this day! One person at OU that changed our life was Gavin's surgeon, Dr. Pastuszko. If it weren't for God, prayer and Dr. P our son would not be alive today. Dr. P is a humble man, always asking us to refer to him by his first name, giving us his personal cell to contact him. I will never forget the day I met him. I was 8 months pregnant. My mom went with me to have a consultation with him. I remember the day like it was yesterday. I had pages and pages of questions for Dr. P. He sat there with me giving me all the information I would need to "prepare" for the birth of Gavin. He even got emotional, as he had just had his first child himself. I took in as much info as possible. Trying to mentally, physically, emotionally prepare myself for what was about to happen. My mom and I headed to the parking garage, silent, not knowing what to say. I'm sure as my mother she felt helpless trying to figure out what to say and what not to say. We got in the car, I threw my head down on the steering wheel and sobbed. I bawled for what seemed like an eternity. I was about to have my first child. Like most mothers, you have no idea what to expect. You're not sure about the whole labor process and the emotions you will experience. On top of that I was dealing with the emotions of having a child with a fatal condition. After I got a good cry out of it, I decided to let go and let God. It was out of my hands, the best I could do was take care of myself and my precious son growing inside of me. I knew instantly that I wanted Gavin to be under the care of Dr. P. He made me feel at ease and he was extremely compassionate and caring during the initial process. Gavin was born less than a month later. Most of you know the story from there. If you don't visit www.gavinparker.blogspot.com to read the entire journey.

Gavin had his first two open heart surgeries at OU Children's. We learned shortly after the second surgery that Dr. P would be moving to California to pursue an amazing position at a top notch hospital. Of course we were happy for his family as they had family in that area. However, we were devastated because we knew that Gavin had a least one more big open heart surgery he needed to get through. And we wanted Dr. P to be the one to do it. So we decided we would follow him to California for the third surgery. At the time Adam didn't have the best of a job and I couldn't work because Gavin needed to stay out of day cares. Financially it was a huge burden for our family. But we had made a promise from day one that we would do whatever it took to give our son the best care possible. We ended up selling our house and moving in with my parents for a period of time. We saved up money and our church generously helped us in our time of need. We are forever grateful for their support during this difficult time. Gavin had the usual ups and downs with his third surgery. We flew back home after about a month in California. While we were there God blessed Adam and our family with a new and amazing job opportunity. The president of the company happened to live in the area we were staying and came to the hotel to interview Adam. Adam flew back and fourth to Oklahoma and we were so excited to find out that he got the job! Through every financial, emotional and physical burden God has provided so much for our family.

About a year after Gavin's third surgery he went through an extended period of tiredness. He would wear himself out so easily, taking frequent naps and getting out of breath after activity. The cardiologist had several tests ran and after another year of dealing with the situation it was decided that Gavin would need a pacemaker. We always knew this would be a possibility. He was in pre-kindergarten at the time. We made the decision to do the surgery that spring. We wanted him to have an enjoyable summer and not miss any school once he started kindergarten in the fall. So we packed up and headed back to California for the pacer surgery. Two weeks later we flew home.

This was the time that Brandon called and informed us he wanted to start a foundation to help children like Gavin. Instantly we knew how hard it was on our family to travel back and fourth. We thought to ourselves how are other people doing this? Those that don't have the support or resources to travel out of state for care. We brainstormed with the Weeden's and came up with a plan. We knew what we wanted to do with this foundation.

We celebrated the draft with the Weedens then started planning our first event. It would be a golf tournament. Brandon Weedens Swing from the Heart Golf tournament was in full swing. We ended up selling out of spots for the tournament. We received generous donations for the silent auction that would take place during the tournament. It was a huge success and planned in only a couple of months. The purpose of the tournament was to raise money for an endow chair to get a surgeon in place at the Children's Hospital in OKC. We would need to raise 1 million dollars to reach our goal. We raised over $60,000.00 at the golf tournament which was amazing for the short amount of time we had to plan it. We know with time our goal will be reached!











Sunday, December 9, 2012

And so it began...

Gavin recovered from pacemaker surgery remarkably well. It was by far the easiest surgery of all four. The hardest part was getting him through the emotional roller coaster that we would ride on for months to come. Gavin came out of surgery with a partial smile and thumbs up. The days that followed, would show a different side of Gavin. He cried a lot. It was off and on, random, never knowing when it would hit. He didn't want to play in the hospital play room with the other kids, wasn't interested in talking about his feelings. Just lots of crying. We flew home about 2 weeks after surgery. Our life was back to "our normal."




Back up to my April 13th post. When Brandon discussed the foundation with Adam he also requested that Gavin come to his draft party. Of course, we were excited and honored that the Weeden's asked us to be a part of such a special day. Gavin didn't have a clue as to what the draft meant or what a big deal it was for Brandon. As much as we tried to explain, he didn't fully get it.

Gavin continued to recover at home, still dealing with his emotional up's & down's. He definitely felt good enough to travel to the city to see his best friend Brandon. And we knew it would put a huge smile on his face. So we loaded up and headed to Brandon's parents house. Once we arrived it was the usual excitement from Gavin. Hugging Brandon, high-fiving him, you know boy stuff. Brandon equally shows excitement towards  Gavin, always welcoming him and letting him know he missed him. It was a great night, lots of wonderful people in attendance. All of which were so loving to Gavin.


Through all the chaos, phone calls, & interviews Brandon made time to stop and talk to Gavin. Half way through the evening Gavin was sitting next to Brandon on the couch watching the draft. A special moment for Gavin, one he still talks about today.


Brandon received the phone call that he was drafted to the Cleveland Browns. It was a surreal moment. Watching the excitement in Brandon's face and seeing our son jumping up and down next to him. Going back to what I said earlier, Gavin really didn't understand what was going on but still his bud was excited so he was going to be excited to! Then Gavin turned to us and said "see, I told you Cleveland would pick him."

Monday, October 29, 2012

April 13, 2012

Gavin was in the hospital recovering from his pacemaker surgery. Physically, Gavin was doing great, he was recovering as expected. However, emotionally he was struggling. He cried a lot and was having a hard time expressing his feelings. Something he continues to struggle with, most likely due to what he's been through in his life. Back to that day, April 13th, a day that forever changed our life. 

Adam received a phone call from Brandon Weeden. A little history, Brandon & his wife Melanie have been a part of our life since Gavin was 8 months old. They have become life long friends. Melanie was working with Adam at the time. Brandon had just finished his MLB career & started his football career at Oklahoma State. After an amazing run at OSU, he was drafted first round for the Cleveland Browns. Through out Gavin's journey, hospital stays, etc Brandon & Melanie had made a point to text, call, check in with Gavin. So on this day when Adam received the phone call, we just thought it was the usual checking on Gavin. However, during the call Brandon shared with Adam that he wanted to start a foundation in honor of Gavin. He wanted to make awareness about Hypo plastic left heart syndrome. Do whatever he could to help others that were going through our same situation. That moment will forever play in my head. I will never ever forget it. I am filled with emotion every time I think about that moment and what has transpired since. 

It's been a LONG time

Well, it's been a long time since I blogged. So long that I forgot my password to Gavin's original blog. Every one tells me I should get back to it so they can keep up with Gavin. So much has happened the last three years. To read Gavin's story from the beginning go to www.gavinparker.blogspot.com. Gavin also has a caring bridge site where we kept everyone up to date with his fourth open chest surgery in April. He had a pace maker placed. Since April our life has changed in the most incredible way. So I'd like to start fresh and share what amazing things God has put into place in our life.