At the heart of it…Family!
In the wake of recent events in the media with scandals, shootings and discord leading the headlines, it occurred to me that at the heart of it all is family, values and communication. Lead by example. Talk over the dinner table each night, restore or heal broken families, promote integrity and personal responsibility, bring up intolerance and what that looks like and so much more!
In relation to a birthmark or Sturge-Weber syndrome diagnosis, our families are already behind the eight ball as far as divorce statistics go. The myriad stressors on a marriage and family with long term illness is well noted. It is incumbent on nuclear families and their extended families to talk about the stressors and to show up with support, a shoulder to cry on, and uplifting words of encouragement when needed. I’ve seen over the years where one parents takes the lead on dealing with the medical issues becoming a lay expert and the other parent basically takes a back seat. Eventually I see cracks occur as the one leading the charge grows weary or frustrated…those marriages have discord. There are those rare couples are a team and who have a grounded faith and deep bench of networks for support…they survive and thrive. I implore you to take an annual check up on the state of your marriage, family and finances. Maybe even have a family motto or creed! You ARE great teams who have the privilege to nurture the children and adults living with these conditions.
Communication in today’s world starts with shutting off all the various media devices that are literally at your fingertips. I was out to dinner in San Diego during the American Academy of Dermatology conference and glanced across the table to a family with a 3-4 year old daughter. She was dressed to the nines and was very well behaved for an upscale restaurant but sadly her head was buried in a phone playing games. Her father had his head in his phone…maybe emails, newsfeed catch ups etc. A few times the mom and dad looked up and chatted and the little girl did too. It would have been a perfect time to talk about their day, comment on the nice décor, table manners, and so much more! EVERY minute of EVERY day a parent has the opportunity to teach and lead by example and discuss how to share and cope with feelings good and bad.
There are sadly many families across our country who are broken and hurting due to divorce, death, multiple marriages etc. Children need the reassurance there is a steady and nurturing adult no matter what the family state. The Sturge-Weber Foundation has always been here to network families to ensure they receive the support, resources and direction to create a solid foundation to handle this marathon race with SWS and a birthmark. You are NOT weak by asking for help or direction. I have known and seen the fiercest warriors from World War II, Vietnam, and Afghanistan cry like babies and then man up to face another day…we are no different. We have no choice but to show up!
The SWF has declared next fiscal year…Growing Golden! The wealth of wisdom by thousands of families who have gone before you will be mined and disseminated in multiple ways. While there will be a focus on adults with SWS, the younger generation will not be left behind. Together we will use our common resources and unique talents to create an even more robust platform of services for all of us and for the next baby born with a birthmark and the needs their families will have.
I invite you to join our effort and share your time, talent and treasure for the greater good. Hugs heal and I’m a big believer in them! I look forward to meeting you at any of our SWF events and share a hug, tears and laughter as we forge ahead with the opportunities we have been given.
