We have heard from many of you over the years of your frustrations with communicating effectively with various people, doctors, educators, the public, and many more. I have had many moments where I felt unheard or misunderstood leaving me frustrated and angry. You know the times when truly it would be a good idea to carry duct tape! When I told Kaelin what I was thinking about for this article, she at first thought I meant to use it on other people. (Although after she said it, the appeal was there!). I quickly corrected her! I have enough miles on this SWS journey now and on the road of life that I’m more confident to say what I think yet Southern enough and raised to be “nice”. So, there are times I will be nice and other times when I just can’t really hold back so best to carry the duct tape to ENSURE I’m kinder if nothing else.
I look back over the years and remember those moments when the words were out of my mouth and couldn’t take them back. Seeing the hurt look in the other person’s eyes left me feeling small and not respected. I was in full-on, Warrior Mama mode! Our children and loved ones living with an SWS diagnosis know all too well how cutting the wrong words said at the wrong time can leave lasting emotional scars. It is our role to give them the right tools and words to ward off a mean or unthinking public. I encouraged Kaelin to become her own best advocate and feel confident in doing so but it did take many years to get there! For instance, when confronted with a stare and rude question like “What happened to your face?”, I would encourage her to answer either “I’m not comfortable sharing that with you now” or “Excuse me do I know you?” or if she’s feeling confident to simply share what she chooses to about her birthmark.
I believe we are all worthy of Grace. I like to think many of the hurtful comments and frustrations are from a place of ignorance or poor nurturing. This season I will give it my best effort to bring the duct tape and share the Grace and hope I receive the same in return. I give thanks for all I’ve learned on this journey and for each of you who have walked beside me every step of the way. We have built a community of friendship and knowledge creating a lasting impact! You are the greatest blessing and are paying it forward. Feast away and share what you can!
Faith, Hope, and Love,