Skimming through the newsfeed on my Facebook account yesterday, I saw a post that my friend from college posted about a family she knows in Houston. This was her post: "Please lift my friend Mike and his family up in prayer as they cope with the heartbreaking news of their precious baby girl's recently diagnosed incurable genetic disease... and please help spread awareness about SMA. "I followed a link my friend had posted underneath these words which led me to Avery's Bucket List, a blog that explains more about 5-month-old Avery, her diagnosis, and her amazing Bucket List of things she wants to accomplish. As "she" writes on her blog, "I have a lot of living to do in just a little bit of time and I'm going to need all of the help I can get from my parents and anyone else who wants to help." Her parents are reaching out to anyone and everyone for awareness about SMA as well as how to help Avery accomplish this remarkable list of activities before she dies. Other children with her diagnosis have a life expectancy of less than two years. I cannot imagine receiving such awful news.
My heart hurts for Avery and her family. This is so unfair that a tiny, innocent baby has to go through this tragic disease. Yet, I am in awe of Avery's ambitions to live her life to the fullest by creating a Bucket List of amazing things to do in the time she does have here on Earth with her family and friends.
I added Avery's Bucket List to my blog friends list (on the right-hand side of the page). At first I felt badly "stalking" her blog posts like I was simply an onlooker who couldn't really do anything to help her. But, I also didn't want to just forget about her and thank God this wasn't happening to me/us/Banner. That felt so cold, and honestly, I couldn't get her off my mind!
One of the Bucket List items is to help spread the word about SMA (Spinal Muscular Atrophy), and this is where I felt I could help Avery and all the other kids with SMA. In fact, here is part of her Bucket List:
- Go viral on the internet - I know I'm not singing a song, doing anything funny, saying something politically incorrect, or anything like that, but it would be nice if my story went viral so that SMA has a face.
- Be an inspiration to others and then continue to be an inspiration to others
- Teach the world about SMA
- Help find a cure for SMA so kids like me can use their muscles to walk, talk, hug their loved ones, and live a long lasting healthy life
So, I'm hoping this little bit on my blog will help sweet Avery in her fight and help make her short life be a BIG life! I am motivated by Avery's parents for making every.single.day count for so much! Little Avery has big dreams for her life, and she's already doing so many amazing things for a 5-month old. I don't want Banner's life to be just waiting until he's big enough to do all these fun things... we should be doing them NOW. There's no time to waste, and Avery's blog and her story inspired me to not just wait until Banner is older to show, teach, explore! Avery IS an inspiration, and so are her parents and grandparents. Her story makes me think bigger and stop sweating the small stuff like when Banner won't nap longer, may be off schedule, or wakes me in the middle of the night. For goodness sake, I have a healthy kid who is so curious and alert; he's strong and healthy, and for all of these things I am thankful, grateful, and appreciative every minute of every day!
(Here's another Mommy's blog about Avery's story.)
Thank you so much for sharing, Am! I will forward to Mike!!!
ReplyDelete:-) (sometimes a simple smile is worth more than any words)
ReplyDeleteThank you Amber!