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Day 22 of 31 Days SMA Topic: A Grandmother’s Perspective This is @ttaylor190 ’s story: On a snowy day in Truckee, CA, my dream came true. It was December 1, 2009. I became a nana to THE most amazing, beautiful and perfect little baby boy on the planet. EVER!!!!! I had such joy in my heart and was thrilled for my daughter, Ashley, and her husband, Cameron. Two months later, we heard the words “Spinal Muscular Atrophy” for the first time. My Charleston was diagnosed at 3 ½ months old, and it was the worst day of our lives. We were told to take him home and love him; no treatment or cure; that he would be gone in six months. My Charleston is now 10 years old! He is thriving and loves his life. He may not be able to move much physically, but he moves mountains instead. I’ve watched my amazing daughter and son-in-law figure out modifications so that he’s able to experience things other kids do — like sledding, 4-wheeling in a Jeep, riding in a canoe, enjoying bike rides with his family, and attending school via a robot. He’s in GATE (gifted and talented education) because he’s SMART!!!!! Just a few things that my Charleston has taught me: – Unconditional love – How to take time to smell the flowers – That what I perceived as “no life” turned into a beautiful one instead – You don’t need to speak words in order to communicate – That his eyes are the windows to my soul – He’s a great big brother and has lots to teach his little brother – To not take anything for granted – or anyone – To adapt! Holidays don’t look like what I thought they would, but who made the rules that they’re supposed to be the way I think? – To appreciate every single moment and love life, no matter what it looks like – And that my daughter is a ROCKSTAR!!!!! SMA is hard – on my Charleston; on my daughter & her husband; on his little brother; on me; on my son and his family. But what a gift it is at the same time — who gets to love an angel on earth??? WE DO!!!!! I live for the moments that I get to look into his beautiful eyes. He looks deep into my soul and tells me he loves me. I’m the luckiest nana alive. #SMAAwarenessMonth #SMAAwareness #31daysofsma2020
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