| The greatest little guy, undisputed heavy weight champion, your next president...... Ok - Charlie is an adorable (duh) and sweet little boy. He was born in December of 2004. He was our first and we couldn't have been more excited. He did everything a newborn is supposed to do: eat, sleep and poop. And boy were those poops stinky. Aside from being stinky, he pooped alot. It was literally coming out of his diaper fairly regularly. We had no idea that babies pooped so much.
| As Charlie got older he was growing like a weed. He was in the 75th percentile for height and the 50th percentile for weight. We took him for his torturous newborn shots and everything was perfect. He was an absolutely perfect baby. He was the kind of baby that you don't want teenagers to spend time with because they may get the idea that raising babies is easy. He smiled while he was still at the hospital and he kept smiling. In fact he smiled so much that Sears put him in their ads and everyone else put him in their hearts. He lit up the room and he still does.
Our first summer came around and we found out quickly that he was just like his father, a little hotbox. He was sweating all the time. Since I was constantly showering him with kisses, I would notice a strong, salty taste on my lips. A taste like I had just been swimming in the ocean. I figured it was because of his sweating. His aunt Kathy wasn't so convinced. Salty kids are often afflicted with Cystic Fibrosis she warned. Her warnings fell on deaf ears. My smiling, perfect baby didn't have any diseases. She insisted that I talk to his doctor and I did. No way, she told me. He is thriving, his weight is good. He is fine. My doctor and I agreed. My sister-in-law was relentless. Salty babies, salty babies, salty babies.
| My husband and I thought she was nuts. Sweet, but nuts. I asked again at the doctor, and again. Finally my doctor said that we would give him the test just to shut her up. I was so confident that he was healthy that I didn't even take him to the test. Aunt Kathy took him in and they put a tiny, painless electrode on his skin to stimulate his sweat glands (like he needed it) and then put a piece of gauze over the spot and had them walk around for 30 minutes. Fast forward, I had my own doctor's appointment and I was callously waiting for my shrooms to arrive at my after-doctor-appointment-lunch-at-Houlihan's, again with Aunt Kathy, when my phone rang and my universe stopped. I picked it up thinking that it would be quick and it was, because moments after telling me that my baby, my one-and-only, had a disease that is hell-bent on taking his life before he is forty, I was running out the door because I needed nothing more than to have him in my arms.
| I have never experienced anything more painful. The very idea that my son could be excluded from things because he's "different". That he might feel shame over something he can't control. That he might spend any of his nights in the hospital. That breathing is something he has to think about and treasure. That he is reminded of his disease with every meal. That he will be cognizant of his mortality. That I can't protect my baby. That he will hurt and I can't kiss it and make it better.
| He deserves more and we deserve more with him. He is the most amazing person I know. He lights up every room he enters and every heart that sees him. He tells jokes because he likes to laugh and he loves to make other people laugh.
I found out later that he had other symptoms. A failure to thrive is common but Charlie was thriving. The stinky poops and the amount of poop are characteristic of the disease as well. We had a lot to learn and we still have tons to learn and what a joyful boy to teach us. It is for this boy, and all of those like him that we started this auction.
| I hate this disease. I hate that Charlie goes to the doctor every three months. I hate that he is afraid of doctors and nurses. I hate that we know how tough he is from his first hospital stay. I hate that he's tough. I hate the picture of him laughing on his daddy's lap sitting in the hospital. I hate Cystic Fibrosis. But I am so grateful that he is still doing okay. Please help us keep it that way.