REMINDER TO SELF - GROW THICKER SKIN

One of the parents in my BWS support group had an unfortunate, but all-too-common, incident with a store cashier this week, and it reminded me of how thick I'm going to have to let my skin grow after Priya is born.

Because of her syndrome, she will likely have a thick, wide, and possibly unusually long tongue that will be difficult to keep in her mouth.  It's one of the organs that typically goes a little bonkers with BWS.  Another common symptom of BWS is just growing greater than 90% for height and weight.  So, a two-year-old might look like a four-year-old with a two-year-old's behavior.  That sometimes causes people to look at a parent and child and think they have a really immature and unruly kid, when really their behaviors might be totally age appropriate.  Or, another outcome is the child's size and the tongue hanging out of the mouth causes people who don't know better to assume and sometimes make comments that our kids have Down's Syndrome, which they don't.  And it is frustrating, because Down's Syndrome is a whole other syndrome with a whole different spectrum of issues.

It may be difficult at times of high stress to remember that people are naturally curious and will ask questions or make remarks about you or your child that are based on outside appearances and oftentimes ignorance.  It is up to me, as a parent, to educate people in a constructive way.  Easy to remember now, but it will be harder to remember in the heat of a moment.  So, reminder to self, grow thicker skin and be patient with people, yourself, and your kiddo.   I know friends who have already had to go through this kind of thing with their children who are either adopted, have Down's, larger O's or other special situations, and oftentimes when I first hear their hurtful stories, the thoughts of what I'd want to say to bold strangers are not too constructive or kind.  I hope I can remember to deal with these situations gracefully when my turn is up.  So, here I am finding myself pondering some good responses so that I won't be taken off guard when they do happen...

But another reminder to us all, don't judge a book by it's cover.  Give people--especially strangers--a break.  We really cannot know what a person or family is dealing with unless we know them personally.