Seeds and You!

Since this is our annual Month of Awareness, I want to thank each of you that have planted your own lil' seed of change through online events, local events and activities. They may be as small as a mustard seed, appealing as an acorn or as surging as a sunflower (as is our representative campaign logo) but they all have generated awareness or vital resonating impact!

Most Christians have been told about the faith and mustard seed analogy and in this journey we all face whether it’s as a caregiver or one who has the diagnosis or birthmark, there are THOSE days when it seems faith is all that gets us through the day! I know there have been numerous days over the last 30 years with Kaelin that on THOSE days I truly needed an extra pair of knee pads as I was wearing out the first pair asking for relief!!  But, I always made time to do just one lil thing to create to a shop clerk about why her face was “red” or hand out a brochure in the neurology clinic, or write a letter asking for donations to pay it forward! If not me, then who?

My dad also had a cute lil' saying “From lil' acorns grow mighty oaks”! It was his way of reminding me that we don’t get to be strong mighty oaks without starting out as a lil' acorn to be shielded from the elements by the mighty oaks around us until we can take root and thrive on our own. I see the SWF and our members like that forest of mighty oaks…(without each one of us who have grown into mighty oaks due to adversity and blessing) nurturing those still as vulnerable to the elements like a lil acorn our forest will die off…we need you!

I also liked the planting seed change for change idea as sunflowers rapidly bloom and reap a great lil harvest that will also reseed itself and keep the whole garden going! Let’s face it we ALL bloom with lots of nurturing! All of us who care and share of ourselves provide much needed sunny rays of hope with our commitment and care. This year’s MOA is already exploding with events both online and in your local community that proudly spread the word about birthmarks and the medical complications that can ensue. These activities will make Sturge-Weber syndrome and birthmarks  a household name and imbibe all impacted by the diagnosis with pride for overcoming so many challenges along the way.

OBVIOUSLY none of us wanted to live with this birthmark or the syndrome but by darn if we must then let us show the world how we overcome it with grace in the face of adversity and joy! Each day we must rise up to celebrate the sometimes incremental gains and other times monumental ones! Remember that 70’s saying “Bloom where you are planted” well with 2017 Month of Awareness events you are showing the world that you are blossoming in the face of adversity!! Let’s keep that Change coming so we can continue to Change your world one beautiful blossom and person at a time!