Each time I see her, she has the same sweet, "lights up the room" smile and a killer hug that makes you feel like you are the most important person ever.
Unfortunately she's already moved from cane, to walker to wheelchair. Hard to see such quick progression in just 7 weeks. But, as we were told today, the familial type of ALS moves quicker than the sporadic type. There isn't any prognosis of specific time frames, but it was said clearly that this is moving quickly. She may move from a bi-pap machine to an a-pap soon.
Today a large group met to join forces for practical support and help for the family. Meals, household help and social times are all a part of the needs being met for this precious family. With the number of folks there willing to help, it's going to be a harder task to wait one's turn than to get the help needed.
Hallelujah! This will allow them to spend their now limited family time as a family, making precious memories.
My emotions are kind of shot, but it is okay. It's the reality of it, right in your face and right now, that really hits hard. In my day to day normal life, I can easily forget the major issues others may be facing. But when I see her, it all comes home again that she is going to die from this.
I gave her an extra hug today... but to be honest, it was selfishly for me.
...may there be mercy and time for more extra hugs - for me and most importantly, for her family.
