In All Things Give Thanks!
It is that time of year when we reflect and give thanks! This year has been a long one filled with sad and joyful moments too. My baby girl turned 38. Each birthday reminds me of the first day, first month, and first year which was filled with her doctor appointments and surgeries. Truly a whirlwind of fear and pride and joy…fast forward 38 years later and she still copes with glaucoma-related issues, low vision, migraine headaches, and other quality-of-life issues. However, she IS an overcomer, and I am so proud of her master’s degree, her full life, and all the blessings we have with her tenacity! In ALL things give thanks!
Our family is hardwired to focus on the victories and not to become a victim by focusing on the missteps or failures. Even my son is geared toward “Look on the bright side Mom!” It is so wonderful to be in the loop on your lives and the roller coaster of moments throughout your life with a birthmark and Sturge-Weber syndrome. Together, we can dream big, be prepared for all that life throws at us, and be a resource for those who will follow in our footsteps. In ALL things give thanks!
Sadly, we had two wonderful boys with SWS who died this year. Brooks Darnell and Mark Huber each had their own SWS challenges. Their families have honored their lives through donations and memorial comments. It always makes me even sadder when tissue could be donated to put it in the hands of researchers begging us to let them get to work! Skin, brain, and eye tissue are needed to test research hypotheses and genetic queries. Tissue gives hope through answers! What a light they were to their families and inspirations to all those they came across in their daily lives.
I hope you will join us in honoring them! No one wants to think about dying but it WILL happen…give the gift of hope to those remaining on the SWS frontlines, their healthcare providers, and researchers’ adamant to find answers! Help us find answers sooner rather than another 37 years later!
Please BE PREPARED and sign up to donate tissue. In ALL things give thanks!
It has truly been a blessing leading the SWF for the last 37 years. While I will never have grandchildren, I am so thrilled to live vicariously through all of you and yours. I thank the family community we have created and continue to nurture as well as the gifts of tissue which are more precious than gold!
I’m sending blessings for a wonderful holiday season and for a better less stressful new year.
