Charleston wouldn't be Charleston without SMA. As much as I hope and pray and BELIEVE that he will receive the "cure"...... I love him just the way he is. You see, he has these beautiful, deep blue eyes. When he looks at you, he speaks to you through them. Sometimes he even gives me butterfly kisses, and when he does that, it melts my heart.
He's happy. He's surrounded by the love of our family (especially his incredible mama who never ever ever leaves his side). By him having SMA, Ashley has been able to stay home with her beautiful baby and be the most devoted mother I've ever known. And he gets to received oodles of love every second of his life.
We've been re-introduced to Mickey Mouse!!!! Hot dog, hot dog, hot diggity dog. Who would have thought that at my young age of 54, I'd be dancing to a hot dog song????? See, that's another good thing about SMA.
We've "met" other amazing SMA families. Through Facebook and SMASpace, Ashley is helped daily by friends that are living the same life as she. These other parents truly know more than the doctors, and because of them, we still have Charleston. Last year I went to an SMA Conference and met a few of them in person, and this weekend I'm traveling to LA to attend a fundraiser, and will meet even more. I can't wait to give a few big hugs!!!!
Other wonderful people have come into our lives as well. Last summer, out of the blue, I heard from an amazing woman that had never met us, but had heard of our little Charleston and wanted to help. Her name is Katie Patterson. She put together a huge fundraiser downtown Reno, along with the volunteer firefighter family up here (I couldn't stop crying!!!! - surprise, surprise). They raised enough money for Ashley & Cameron to purchase a van to transport the baby in, and they just ordered two more pieces of equipment that he needs. Without Katie and the support of the firefighters, we wouldn't have been able to get the things that we need to help him with his life.
SMA has also taught me to slow down (well, kind of). I take the time to smell the flowers, because Charleston loves them --- so when the weather is good and he can leave the house, we go for walks and find flowers. You should see his little dimpled hands holding a flower to his face, and the look in his eyes when he looks at one. Precious. I've learned to enjoy poop in a bathtub!!!! It cracks me up! I love it when my house is full of baby stuff....granted, a cough assist machine and oxygen tanks aren't exactly what I pictured when Ashley was pregnant, but now I love it when all that stuff is here, because it means he is too.
I know who my true friends are. You know who you are. Thank you, I couldn't get through this without you.
There are good things about SMA. This little boy is one of them.
