Woke up this morning with that saying, “Dream Big” resonating in my mind! I’m preparing the final manuscript of a book I’m writing and a few of my cherished Warrior Mamas came to mind. Ever since the SWF was founded back in 1987, there have been courageous moms and dedicated researchers who uplifted me when my spirits were down (as my dreams for Kaelin and each one living with SWS were not fulfilled as fast as I’d liked). They were my biggest cheerleaders, fundraisers, and investigators and always reminded me to stay the course and Dream B-I-G!
Looking back over 32 years of living with Sturge-Weber and all that it entails, the truth is as parents we all want the same thing for our children whether they are typically developing or have special needs. We want them to have a fulfilled life and be happy. Sharon G. was the first mama who led by example. Though her son, Geoff, became blind due to glaucoma and learned at a different rate, Sharon never put limits on what Geoff wanted to do but researched and worked to adapt and make his life soar! Today, Geoff is married and lives a life full of travel and a variety of interests.
Nina W. was another mom who had no road map on how to raise a child with SWS but the right identified support systems and family help has made Cynthia’s life fulfilling and complete with a cherished friend who also has SWS. In reflection, it is the friends we meet along the way who nourish our weary souls and who share the smallest of triumphs as HUGE celebrations. Some of these friends we meet because of our shared SWS diagnoses and some through everyday life activities.
Many of the dreams I’ve had for Kaelin have blessedly come true! The dream I had to find out what caused SWS has been realized and anybody who knows me knows that’s not BIG enough! I want models to test treatments and new medications. I want improved lasers to shorten treatment times. I want a whole new generation of your little ones to have more resources to improve their quality of life and care. As always, I want more funding to give to interested researchers to keep the momentum going!
Please join me and Dream B I G! Every pair of hands we have doing our unique part in our little corner of the world gets us improved quality of life and care that much sooner…trust me, 32 years go by in the blink of an eye!!
TIME’S A WASTIN’!!
Faith, Hope, and Love,