I'm home alone and I'm supposed to be taking a break, a time out of sorts, from all things Charlie...but how is that even possible? Its day 12 for Charlie at the hospital, and Matt is staying with her tonight, she's on the mend but her secretions are still thick and we find out if we're moving over to Canuck Place tomorrow or staying at the hospital a little longer.
We've been eating shitty, sleeping shitty, and super stressed out...we just want to be home again! We haven't really cuddled Charlie in 12 days, and that's 12 days more than we're used to...can't be good for her either. But, the good news is, Charlie's respirologist came to check on her yesterday and couldn't believe how much she was moving her arms and legs and said "type 1's don't move like this at her age, she's more of a type 1 1/2 and I think if we manage her colds quickly, she'll be around longer than we expected." Great news! And, yes, I've heard SMA parents say their kids were a type 1 1/4's or a 1 and 5/8th's, and I'm not an optimist by nature, BUT, this guy is as frank as they get...in all of our meetings with him he has given us nothing but the grim truth and facts, he's a VERY serious man...Matt and I always leave his office completely deflated and ready to jump off a bridge, so I know he wouldn't sugar coat anything, and frankly, that makes me respect him and his opinions that much more. So, we're feeling a little hopeful again in that regard. We feel like we can dream again...but carefully.
We are the proud parents of the most beautiful little girl in the whole world, but as I've said to my family and friends before, I can't help but feel like I'm/we're in emotional and parental purgatory. We will never really be happy and satisfied with our lives as parents, because she's sick, and we don't really feel like real parents either...not parents of a child like almost everybody else we know is, like we also planned for and dreamed of too, but one they say will be here today and gone tomorrow. And because Charlie is our only child, there will soon come a time where Matt and I will have to give back our titles of 'mom and dad', I really can't imagine going backwards to the Charlie-less couple we were before her. It's frustrating because we all sort of, wether we admit it or not, have children not only when it's 'our time' but also, it seems, around the same time as all of our peers are starting families...we get to a certain age and the pressure is on and we desire to be included in and partake in the evolution of growing up, family, and the 'next step'. When we weigh our options we often think, "Is it really worth waiting five more years? All of my friends children will be in school and I'll have a newborn." And often, that helps in our decision process regarding starting a family, or waiting a little longer. It's human nature to connect with others that are on the same path as ourselves, and to be influenced by them as well.
Matt and I have more in common with the parents we've met in the last 9 months who have children with rare neuromuscular diseases and cancers, then with the people we've spent the past 20 years growing up with...that baffles me...that we're 'those people'. Still. Our future holds many hospital visits, many close calls, plenty of stress, big decisions, loneliness, and isolation from our family and friends, sprinkled with good times. Often we hear people say, "Wow, you two are so strong, you know, whenever I'm having a bad day, or complaining about my life, I think about you two, and how strong you are, and I realize how fortunate I really am." And, I know people only mean well with that statement, but I can't help but feel like mine and Matt's and Charlie's lives are being used as the barometer for a shitty life...like, "Things could be worse, you could be Matt and Cherie" kinda thing. It's almost embarrassing. I feel exposed...like I couldn't even fake like I had it all and was living the dream (as we often do) even if I wanted to. It's a really good thing I'm a 'wear my heart on my sleeve' kind of person!
I'm thinking too much time in the hospital, in an isolation room with no windows, is NOT a good thing. We're really needing home right about now...and maybe an attitude adjustment...or maybe I've just got a case of the Mondays.