One of the many reason I blog is to give people like you an honest glimpse into this life. A life that includes raising a child with a terminal illness, dealing with death, finding hope and joy in living life, pursuing the amazing gift of adoption amongst many other things. The reason I choose to be open and honest is mainly to help people who have never lived this life to understand what it is like -- and maybe help them find themselves better able to support other families in need or dealing with extraordinary life circumstances.
I love talking about Gavin's life and death. This week I just happened to run into a nice lady at Target who happened to notice Jayden's feeding tube and bag. She mentioned in passing that her daughter had a feeding tube. After the conversation went on I found out that her daughter was diagnosed with Mitochondrial disease -- the very illness that took our little boy away from us. It was an amazing moment of being able to use Gavin's life to give her support and friendship.
Then she asked me this -- what was it like when he died?
Umm, wasn't expecting that. I pretty much gave her my standard answer of, it was so nice to finally see him find peace and healing after suffering for so long. But there was obviously so much more I wanted to tell her -- but so many things I didn't want her to know or ever have to experience.
One of those things that I wanted to tell her is to prepare for some people to never fully understand. For people to assume so many things that indeed will make an ass out of them. For people to think you have moved on.
After Gavin died one of my biggest fears was Madison. Not so much in how she would cope but the fact that I had to come to terms with the idea that she indeed will forget much of what her first three years included. I dreaded the day when she would draw a family photo and it would no longer include Gavin.
This happened about a year ago and it took my breath away as I expected it would. But he tends to come and go from drawings depending on her thought process and the time of the year and we are totally ok with that -- we need to be ok with that.
However, this week her first grade class in talking about families. The students were instructed to draw a picture of their family. Madison either drew Gavin in the sky or told her teacher she was going to -- Madison was told that Gavin could not go on this photo that she needed to draw him on another page -- that this was only for people who lived in your house.
Umm. Excuse me?
In all fairness I'm hearing this from Madison so I'm sure there is some version of the story that I didn't hear and I really pray there is. But what I want all of you to know is this. We will never move on. Just because Gavin is not physically here does not mean he is not a huge part of our family. We talk about him almost every day -- his photos hang on every one of our walls. His legacy is so thick I could cut it with a knife.
Never tell my daughter that Gavin does not belong in her family drawing.
Madison proudly came home yesterday and told me she put him in the drawing anyway and told her teacher that her mommie told her is was ok.
Seriously love that girl.