First off, I apologize for not updating this blog more often. I feel as though I have little to say now that Evan’s expander process and surgeries are over! I also broke the camera on my iphone so I’m seriously lacking pictures.
Evan is still healing very nicely, and over the past few weeks he has had a lot of visitors, which we welcome. The common theme is that he does look quite remarkable and he will only continue to look better and better. Our local ABC news station also aired their follow-up story (http://www.wjla.com/articles/2013/01/evan-gill-s-birthmark-gone-skin-healing-well-84103.html) this week and we are pleased with their commentary. We repeatedly say we would not be where we are without the support of our friends and family, but perhaps most notably the Facebook group for parents undergoing similar treatments. Which leads me to the next topic!
There has been so much riffraff between the two groups we are a part of on Facebook. One is a nevus outreach group and one is a nevus removal group (where you absolutely have to have a child undergoing removal or undergoing one yourself). Long story short, there always seems to be a lot of division in the outreach group: those who get removal and those who don’t. Removal isn’t always an option for some people, or they opt out for various reasons (money, pain, religion, etc). A mom posted in the outreach group about wanting to compile and publish a list of “funny stories” to share experiences they have encounter themselves or with their children, and share them with those in the group. This created a HUGE uproar with some moms who stated they never find it “funny” and were somewhat offended at the gesture. I go back and forth. I never find any of this funny and don’t think I will ever FULLY accept the fact that Evan had to be born different. I have to come to terms with it 99%, which I’m ok with. But at the same time, we went around calling him a bubble boy for months, mainly to make others feel more comfortable with our situation.
Acceptance is a definitive word in my opinion, one that I will always struggle with, especially when Evan gets older and will undoubtedly gets teased for his scars. However, one mom posted in both groups some words of wisdom that I vow to try to instill throughout this struggle.
To summarize: Imagine you find out you are going to Italy. For 9 months you spend countless hours researching the best places to eat, best museums to see, and devote every waking moment to preparing for your trip. You think about Italy nonstop…it’s all you ever talk about, think about and dream about. The 9 months pass, and you’re en route to Italy, but when you de-board, you’re in Holland. You know nothing about Holland and to you, Holland is misery because simply put, it’s not Italy. You want nothing to do with Holland but you are never allowed to go to Italy, ever. Holland is now your life. You can either spend your whole life mourning the loss of Italy, or accept the fact that Holland is nice too. Holland has tulips and beautiful scenery. The people in Holland are nice. It will never be Italy but only you can make the choice to focus on Holland or continue to focus on Italy.
Evan is our life, and we will encounter bumpy roads and rough waters, birthmark/scar or not. Kids will be kids, they will tease each other and be cruel, but at the end of the day, we have an amazing child who knows no different. What more could we ask for?
We taught him "touchdown"
4 weeks post-op
