By: Sharon Cook

My name is Sharon Cook and I am the Nanna to Skyler, 17, who was diagnosed with SMS at birth.

Skyler lives in North Idaho and I live most of the year in Baja Mexico, one of Skyler’s favorite places to come for an extended stay. We are in a small town about an hour and a half from Cabo and Skyler is well known by many locals. He loves going down to Laze Daze, a small beach bar/restaurant, and helping the staff with taking orders, delivering to tables and a few other tasks, such as squeezing limes and helping with blending his “special drink” behind the front counter.

Sky loves going fishing on the Sea of Cortez, as well as just floating around in the water. Of course, one of his favorite activities is eating at one of our many local taco stands/restaurants. We are lucky to be in a community where people have welcomed Skyler graciously and with kindness and genuine friendship. I have many pictures of Skyler with his “new friends”, including one of our local law enforcement officers that he chose to strike up a lengthy conversation with. I am grateful for the caring, empathetic and kind people in our lives that truly embrace “all things Skyler”.

Skyler and I attended the last 2 PRISMS conferences together and, I must say that, neither one of us wanted to leave. I truly believe we would have picked staying in community with our fellow SMS families over being in our beautiful Baja. My heart was so full seeing the companionship and the purest joy and love that abounded within the walls of the conference venue. I hope it will become an annual event and that many more families will have the opportunity to attend. We were on Cloud 9 during the conference and the week after, sharing our most memorable moments.

At present, Skyler is on a 3 week trip with my husband and I. We were blessed to connect with a local SMS family and Sky was over the moon happy to get to go to Dave & Buster’s to hang with a fellow SMS’r. I am thankful to have spent some time with a new friend, her amazing mom, and I hope to stay in contact with this wonderful, diligent, woman. I realize that as parents there is no “downtime” and I am lucky as a grandparent to be able to give at least a little respite time to his family.

Sky is extremely social and is perfectly happy to spend all of his waking hours chatting and, of course, asking as many questions as he can get in, sometimes not waiting for an answer before shooting off another, lol. I have some ideas on trying to start a program where he could go visit individuals in assisted living/retirement environments that may be lonely and would love to have Skyler ask them every detail of their long lived lives. We might even start a “Call Sky” app where people could sign up (some type of security screening would take place) and Sky would call them at a certain day/time for a predetermined amount of time. When I asked what he wanted to do in life he said he wants to be an “influencer”, which I think he would be very successful at.

Skyler holds my heart. I pray every day for his physical, mental and emotional wellbeing. I pray that the world is kind to him and has empathy. I pray that, as research develops, we will be given more tools in our toolboxes to enable us to better help our beautiful SMS individuals to succeed in every aspect of their lives. Fundraising campaigns have clear direction and motivation.

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