Ham-monsters, oh, my

A year ago around this date, I was getting ready to go to a 2nd birthday party for an amazing little girl who was fighting HLHS and pulmonary vein stenosis. She was still too young to really understand getting a lot of presents and having a birthday party, but I was so excited that I bought her more toys than I probably would have bought her for Christmas. Ron and I wanted her to have things she could make noise with and drive her parents crazy. One of the gifts was a toy drum that opened up to have storage space for all sorts of small musical instruments. Sort of a band in a box.

This year, I'm also preparing to go to an event, but I don't think I'd call it a party. My niece and Goddaughter, Faith didn't make it to Christmas last year. She was fantastically healthy at her party. She played on her swing set, and ate food in her high chair. Other than being small for her age and not being able to walk very fast, she was a lot like any other two year old. Things went down hill probably around Halloween. You can read about it on her blog.

Faith had an amazing vocabulary for a 2 year old, but she never did learn to say "hamster." She called them "ham-monsters." This year would have been her "ham-monster" themed birthday party. Instead, it's a memorial and also a toy drive for Boston Children's Hospital.

As sad as I am about the whole thing, I also know that as a family, we are extremely lucky. Not everyone gets to experience what it's like to have an angel as sweet as Faith around, even if it's for a short time. It really teaches you how fragile life is and that you should take time to enjoy really simple things that we tend to forget about in this digital world.

Faith's birthday is on September 30th. Please wear something pink that day in her memory and in support of all children born with a congenital heart defect. My family's experience is just one story. If you search the web, you can find hundreds of stories that sound just like ours. Some children don't make it through the first surgery and some live into their 20's and 30's and beyond. It all depends on the seriousness of the defect, the decisions made by the surgeons and the grace of God.