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Please and Thank You!

How many times did I sing that lil' dittie to my kids and to my class when I was teaching!! Never truer words have been spoken or sung though. It’s just common courtesy to say please and thank you to whoever has provided you a service or been an inspiration. Good manners have to be modeled at a young age to leave a lasting imprint that we can pass onto the next generation. I’m so old that I remember having to pick up a rotary phone to make a phone call and long distance charges were extra! I think that having to communicate in person and via phone conversations made us more eloquent and considerate of the impact our words had on the recipient. You got immediate verbal and in many instances, visual feedback for how your words were received.

There has been such heartfelt and compassionate support and outreach in our Sturge-Weber syndrome global community. It boggles the mind at the rapidity of response versus the dark ages when Kaelin was born…so very lucky you are! However, there’s a slippery slope currently due to technology that we need to be mindful of before sending our thoughts out to the atmosphere.

It is increasingly of great concern the way society and more specifically, online exchanges seem to be so personalized. One person can make a statement from their experience and another person may answer with a different experience, and then, all of a sudden, you have a lil' cyber war of words going! I mean, WHOA! Have we gotten so sensitive about our feelings and unsure of ourselves that we can’t let another’s experience or recommendation just be…just be what it is…a personal statement that doesn’t reflect back on you? Mind you there are times from the SWF perspective and medical advisory perspective that we may have to step in to redirect or clear up misunderstandings as recently happened with an aspirin exchange. Once the reasoned responses were totaled it was a GREAT depersonalized learning experience for one and all.

My dad, MOO-Mighty Omnipotent One, used to tell us to never say anything or make a decision in a fit of anger. Of course not being perfect, there were more than a few occasions I said “shuck it”, but always regretted it afterwards and realizing he was right! Our time is so precious on this earth, and friends and family so cherished. I encourage you all to make room for a diverse mix of personal thoughts and feelings as we all compassionately help each other along this uncharted journey Sturge-Weber syndrome and birthmarks has given us. Remember each person we encounter…healthcare provider, teacher, parent, diagnosed child, and stranger, have a back story to their day and life.

Let’s embrace the richness of all our life experiences and uplift each other to be our best selves…the best selves that we define, not a tweet, twit, post or slip of the tongue.

Happy trails and send us your tales!

With faith, hope and love,