When I was a baby, the doctors assumed that it was a marker of Sturge-Webber disease and scared my parents to death with talk of a sick child.  As a child, other kids were pretty sure if they played with me it would get on them so they stayed away.  It didn’t help matters that I would rub my hand on my birthmark and then take off after them as if I was going to wipe it on them…..    I could never catch them however because I have severe Asthma and had to use my “breathing machine” on a regular basis.  I’m smiling as I write this because I wonder if I could still do that to the people who stare at me today…

Over the years, I have learned what all the stares mean.  Little ones are concerned that I’m bleeding, so I invite them to touch it and see for themselves that I’m not.  Once they do that, they move on and to them it’s just how they recognize me.    Kids from about 5 to 13 also have a pretty standard stare; disgust.  It may sound weird, but it’s pretty consistent.  I have asked a few of them what they find so gross about it and across the board their answer is that it’s not “normal” or “pretty”.   Their stage in development and their parents have a lot to do with it I think.  Teenagers don’t seem to care at all.  Adults have given me the most bizarre reactions of them all.

Adult responses are most often driven by their culture.  Some Asian and Indian cultures believe that having a birthmark is a sign from God so I get treated with an unusual amount of respect and kindness from those folks.  My fellow special needs parents are not fazed at all and rarely seem to even notice.  New friends sometimes ask questions and old friends sometimes get to answer questions.   The most bizarre adult response to my birthmark is one of hostility.  Seriously.   There are some people who give me a look that lets me know they think I’m a freak of nature and they want to beat me up.  It may sound bizarre, and it is bizarre, but it’s true.  In their thinking, I am too freaky to be around them, or they are afraid whatever is wrong with me will get on them and they are fearful.  Sounds weird, but it’s true.   I typically get that response in small towns or from folks who are afraid of things that are different.

Now over the years, my mother has tried to encourage me to wear makeup to cover my birthmark completely so that there would not be any stares.  Both my parents seem to feel the need to “fix” my birthmark as if I’m under a factory warranty and it’s a defect.  When I was 10, I had begun the process of having laser surgery to remove it.  That was 32 years ago, the technology was just beginning and the test spot they did came right back.  I have not been interested in having that done since then even though they have offered to pay for it.    Instead, they have tried to get me interested in various makeup products that are designed to cover up birthmarks.  My mom is of the opinion that a lady should not leave the house without makeup on in the first place.   I’m not exactly girly, and wearing a ton of makeup to cover something that is not bothering ME is not really my cup of tea.  I have perfected the makeup thing now and If I don’t want you to see my birthmark, you won’t.

This was recently confusing to a doctor about to perform knee surgery on me.  When he saw me in his office, I had full makeup on and he could not tell I had a birthmark.  When he came by before the surgery I had no makeup on at all and was very confused.  He tilted his head to one side and asked “Why do you cover up your birthmark?  It’s beautiful. “   Why indeed.

Kim

All we have had to go on was other parent reports and not much else.  At the ARD today we met one of the staff from the new school and she told us all about their schedule and the staff, how it’s got a special interest in special education as the principal has a special needs child of her own, and how it’s just been remodeled.  She also asked if we would like to come visit and experience the school environment for ourselves.  That little bit of information and invitation to come by was like a huge weight lifted off my head!

You know how easy it is to make something seem worse than it ever could be just by letting your imagination go wild and I had definitely done that! Just a little bit of information washed away my fear and made me much less anxious about the school change about to come and all the change that comes with it.   As parents of special needs kids, we spend a great deal of time in uncertainly.   I have learned over the last few years that I am my own worst enemy in this area and if I would just make the effort to connect with the people who can answer my questions I would be much better off.  My message to you today is to never stop asking questions.  Don’t assume you know the answer based on what it was the last time you asked.  Most importantly, don’t ever accept status quo for your kids.  They are growing and their environments and opportunities should grow with them.