I really don't have much to say other than hug your babies tonight.
Matt found and began following Avery's Bucket List over the weekend. When he discovered it and showed it to me, there were 1400 followers. Now, there are 5016 in a matter of 4 days! Anyway, we were both reading her list, trying to think of how we could help...that we would have time to think of some nice way to support this family and their little girl with SMA. I was shocked to check in with Avery's blog today....
Matt found and began following Avery's Bucket List over the weekend. When he discovered it and showed it to me, there were 1400 followers. Now, there are 5016 in a matter of 4 days! Anyway, we were both reading her list, trying to think of how we could help...that we would have time to think of some nice way to support this family and their little girl with SMA. I was shocked to check in with Avery's blog today....
8:20 pm- OK, I am editing this from home and have had time to think about this all day. My job is not the kind of job where you have a moment's rest to "think"...kindergartners need every brain cell you have to devote. But as soon as they left, I thought about little Avery and how my heart breaks for her family. I thought...
Her mama put her to bed the night before, not knowing that the next day would be the last day she'd have with her. Dad said that just a short time before, they were just hanging out on the couch taking pictures...so glad he got that last one!
It doesn't seem fair that we get to sit on our couch and watch Larkyn taking her cautious steps, while Avery's lost their movement and her parents will never get to see her walk.
Our baby has fun stealing food from our plates (and dog bowls)...Avery had a G Tube and didn't get to try birthday cake and Klondike bars...
There are so many things that absolutely make no sense. I don't even personally know the family, but this story makes my throat tighten and eyes well up. But as sad as we (the general public) are over this, we have to admire her parents. They said it many times, Avery is not "dying" with SMA, she was living. They knew they had precious little time with her and they used it! Look at all the things she did in that short time.
They got her SMA diagnosis on Good Friday. She passed away on April 30th. THAT is how much time they had to process this whole thing, make up a list of how to give their little girl an amazing life, and completed several things on that list!
I can't imagine how they feel tonight. How can they ever walk into her room again? Dad's message makes it clear that they will keep fighting for SMA, to eradicate it and not let any other families go through this tragedy. What a fantastic way to honor Avery.
If you only had a short time left with your child, what would you do? What would you teach them? What would you tell them?
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