Connecting With Karen

The Joys of Turning 60!

Yes, you read it right…joys! I woke up at 3:30 a.m. (yes now THAT’S a joy of old age…lol) and realized that over HALF my life I have been consumed in Sturge-Weber syndrome (SWS) family support, research, fundraising, governance, office moving and cleaning, and you name it! HALF MY LIFE…now if that’s not a wake up call I don’t know what is. Sure I taught Sunday School, vacation bible school and volunteered with Boy and Girl Scouts, swim team and any other activities Kaelin was involved with as she grew up but 24/7 365 days a year for over 31 years SWS has been my focus.

Seriously, I have learned a thing or two being on this ole planet for 60 years. I’ve found that with each passing year I seek joyous moments more and more each day. I have pared away people in my life that my younger self thought I could “save” or make them understand xyz or pdq and because they almost laid me low when I wouldn’t give up on them. I am working on being more fully present in the moment and leaving yesterday behind and the future out there. Maybe having one child with a rare disease like SWS and one with ADHD/Autism forces me to focus on what’s TRULY important in life amidst all the chaos and crisis that each child’s diagnosis brings into my life. I still chuckle when I walked in on Derek one day and he was jumping off our living room chair with an oatmeal box spilled on the floor as he was jumping into the oatmeal watching it bounce as he landed! The shredded paper he flung with abandon all over the floor and even as a tired working mama I couldn’t help revel in his joy too. These are the moments you remember and cherish at 60 years old. Sure you remember the ER visits, the surgeries, the financial angst of how will we pay the bills etc. One can either become focused on the negatives that can impact your life only if we let it or choose to seek joy and uphold the faith! I choose as Derek says, “Wahoo!”

This past Holiday season my dear friend, Pat Scott, invited me to volunteer at the Buena Vista Mission Children’s Christmas party. A couple of hours with kids no big step for a stepper as my dad says! Little did I know those 2 hours would mentally transform me and spur me on to pare down possessions, be more frugal and open up a Pandora’s box of reflections. I’ve been reflecting on how well my life was lived and taking stock of exactly how I choose to spend my precious capital of time to ensure our Country has nurtured, healthy and happy kids. The kids who come to the Mission humbled me in a way no other event has ever done. I’ve been moved in earth shattering ways at the loss of a child with SWS and struck silent when I heard they’d found the GNAQ gene! Pat gave me the greatest Christmas present ever with her invitation by giving me an outlet to volunteer other than SWS related.  I’ll find time to return the gift through more volunteering.

My wish for all the young Warrior Mama’s following in my footsteps is to slow down and realize life with SWS is a marathon not a sprint. Trite but true…one day at a time. It truly IS amazing how fast life goes! I’m blessed Kaelin is still with me and I can still mother her when she lets me. The worries and what if’s still creep in when a new manifestation of SWS pops up or another trip to the ER for migraines occurs but the JOY of being 60 is you know this too shall pass and I’ve learned to exhale.  My wish is for you to ask your friends to volunteer for your favorite cause…hopefully SWF is in the mix J and give them the gift like Pat did for me of feeling blessed for all they have and to feel moved that another’s life has been eased by their time, talent or treasure.

The joys of 60 are too blessedly numerous to mention in this space. Any of you who have met me over the years know how you’ve personally contributed to my Joy Bank. I’m healthy, happy and have cherished memories…no worries I’m not riding off into the sunset just yet as far as I know that is…lol! I look forward to what the years will bring with SWS research inroads, more volunteer help and personally for me to manage my capital of time for other pursuits too. Look out Mission kids here I come!