Tuesday, February 21, 2012

Passing of a great man, trip to Scotland, and Team Colin Heart Walk

This will be another long post as so much has happened in the past week. First I want to proudly announce that Team Colin raised over $5,300 this year for It's My Heart Annual Heart Walk. Thank you all for your continued support!

Passing of my grandpa
On Saturday Feb. 11, my grandpa lost his fight with cancer. I will miss him dearly and will treasure all the fond memories I have of him. My grandpa could be a very stubborn man, but he was also very loving and kind, he spoiled us grandchildren and his great grandchildren. When I was a kid, we would spend summers at their ranch in Colorado. My grandpa was a wildlife game warden for the State of Colorado. Each summer he would buy us animals, then sell them back when we left. We got to have baby goats, ponies, bunnies, you name, we got to keep them for the month we were there. My grandpa loved swing music, he could dance all night long, and did at my and my brother's wedding. He loved New Orleans and Galveston, he loved trains, chocolate pie, and rum. When I was 14, they had a timeshare in Mexico, my grandpa let me sit at the bar with him at the resort and have rum & pineapple drinks.. Shhhh don't tell my mother. Grandpa had a large tattoo on his chest of a naked mermaid from his days in the service. I was always amazed by her, when he had open heart surgery, he was more worried about them lining her back up right, than the actual surgery. My grandpa liked to give everyone different names, I was Sissy Bug, my brother was Corky. My grandpa loved adventure, we often took trips with my grandparents.. Walt Disney World, San Diego, Mexico, Colorado. My grandpa loved Matt and loved to share restaurant stories with him as my grandpa once owned a family dinner and Matt has always been in the restaurant industry. Grandpa adored Katherine, the first of his great grandchildren. He loved listening to music with her and gave her the nickname Katy-Bug. And of course he loved Colin just as much, but he preferred Colin's middle name, Alexander, because my grandpa knew Colin was meant for great things - Alexander the Great. I am going to really miss him, but I know his body was tired, he was in pain, and he missed my grandma so much. I like to think they are in heaven dancing to their swing music drinking some rum and eating chocolate pie.. I know that is his prefect picture of heaven! I miss them both so much.
Trip to Edinburgh, Scotland
My company is based in Scotland and I had to fly out there for 3 days of meetings. I was last there 4 years ago. I left on Saturday night (after just finding out about my grandpa's passing.. Not a great start to a journey that takes 15 hours) and got back Thursday afternoon. The weather was pretty chilly there for me,, it ranged from 25 - 45 degrees while I was there. I spent most my time in meetings or pubs.. They really like their pubs there! But I did manage to get some pictures this time. Matt did a great job of taking care of the kids and holding down the fort while I was gone. I missed them all so much and was really glad to be back home!




Team Colin - Heart Walk
This Saturday was the Team Colin It's My Heart Annual Heart Walk,,, the weather was awful! It was cold and rainy… we could not stay long because Colin was turning blue and shivering. We had flash floods early that morning, so the park it was held out was so muddy and gross. What a shame because it really is a great family event to attend.. BUT the great news is that we did raise over $5,300 for Congenital Heart Defects Awareness and support of families who have children diagnosed with a CHD. Team Colin was in the Top 5 Fundraisers for the walk, that has so far raised $179,000 this time! Thank you all that donated, came out to walk on that rainy day. And a big thanks to my company who matched our funds raised! Hopefully next year the weather is better!

Thursday, February 9, 2012

Congenital Heart Awareness Week

This week is Congenital Heart Awareness Week - Feb. 7-14. Three years ago I knew nothing of heart defects, CHD's, open heart surgery, feeding tubes, pulse oxidation, caring for a special needs medical fragile child. 3 years ago, I was 7 1/2 months pregnant with my second child, all ultrasounds came back fine, I was having a healthy baby boy.

That changed when Colin was 3 days old and diagnosed with an undetected congenital heart defect know as Hypoplastic Left Heart Syndrome (HLHS). HLHS basically means the left side of his heart does not work and he needs at least 3 surgeries to help him survive, not fix his heart, he will always just function on half a heart.

Life changed for us then. At first we were in a scary place, it was overwhelming and sad. But I push to focus on the word HOPE. We have so much HOPE for the future. Medical technology has come so far in the last 30 years and who knows where it will take us in the next 30 years. If I was born with HLHS in 1979, the doctors would have sent me home to die as there was nothing really for them to do. BUT now, look at my child thriving, look at him and his love of life. His smile, his sense of humor, his mischievousness. There is so much HOPE in his life.

A heart defect does not just affect the child, but the whole family. I would love to say the last 3 years have been a breeze, but that's not reality. We have been through some tough times. I even have the white hairs to prove it. Stress was never really a factor in my life before, but you learn to roll with the punches, you have to in order to make it. Katherine has and will always be affected by her brothers heart. At 5 she asks a lot of questions about Colin's heart, she worries about him, she even worries about him dying. Yes, a 5 year has taken on that stress of what happens to my brother & his heart.

Our parents, brothers, aunts, uncles have stepped in helped us so much through this. In a way it has made us stronger as a family. It has made us appreciate life and love a whole lot more.

I HOPE for Colin to have a long, healthy life. I HOPE for all kids that are born with broken hearts to have the chance the thrive and succeed. I HOPE for a cure one day. I HOPE for medical advancements that make HLHS no big deal. I HOPE for my child to always be here with me.
With Colin's smile and kisses, he gives me that HOPE! He keeps the HOPE burning in me.