When you're a stay at home mama of three little ones, one of which is homeschooled its especially awesome to say "World I'm here!"
Before Facebook I didn't really "know" anyone with cystic fibrosis. It has been huge for me to connect with other parents and people living with CF. I learn things I didn't know, diagnose problems before doctors can at times through question and answer forums I'm fortunate enough to have access to.
There is only ONE difficult part of being connected to this community. It is watching names of children you've prayed for, adults you've looked at and immortalized come across your feed and read of their passing. It's a reminder that CF doesn't care the age, how compliant you are or how amazing of a human being they are. It just simply takes.
Yesterday THREE people passed away. It is crazy to me that with all of the advancements in our world people are still losing their lives.
It's something that you don't really move past. I can't put it out of my mind like most of my friends or family. I can hide it away in a corner but it always makes the journey back to the forefront of my mind. It's a part of this I can't get around.
With everything in life I supose that's the way it is, a little give and take, good with the bad, sacrifice for pleasure....
I've been chosen to walk this path, to know these amazing souls and to have to watch them leave this world. I try to not look too far ahead when it comes to Ayla, live in the now and do our best to stay well. There are so many uncertainties in her future, I guess that's the way all good things are. If it wasn't a little bit scary you wouldn't know how worth it -it was.