I've been super moody and emotional regarding Charlie, just finding it hard to look at the bright side...there just hasn't seemed to be a bright side this past week. Ever since all of the medical mishaps I just feel like Matt and I are walking around narrowly escaping land mines. Not a good feeling. I am constantly feeling overwhelmed with information while at the same time constantly feeling under informed. There just seems to be so much conflicting information out there and I'm beginning to feel like a burden on the medical system...are they just trying to make Charlie comfortable while she dies or are they trying to help her LIVE comfortably...I can't tell yet, and I think I'm beginning to get a little paranoid...or am I? I do want to say though that we are working with about 12 specialists right now and I really don't believe any one of them tries to intentionally make us feel this way, it's just that I don't think they get the chance to come together too often to combine all of their information to help them make the best decisions regarding Charlie's care. BUT, they all do what they do really well, and we are fortunate to have them on our team.
We have so many great friends and family members that have been supporting us through all of this...even complete strangers! Wow! It feels really amazing to know that you/they are rooting for us and keeping us in their thoughts. And of course there always has to be a few insensitive people out there, just to keep you grounded. We've been told, "Don't worry, you'll have more kids." And yes, hopefully that's true, but not quiiiiite the thing to say...she's not a gerbil. When I told someone that Matt and I had a 1/4 chance of conceiving another baby with SMA, they told me "You need a new husband." Neat. And when Matt was trying to explain to his uncle in an argument that we were really hurting about this situation, exclaiming "My daughter is DYING!" His uncle replied with, "Oh Matthew, you're going to Hawaii, it can't be that bad, she's not dying for a year or two!" Suggesting we get over ourselves and to stop being so dramatic. Yup, that one's my personal favorite. I will NEVER get over that one. I do realize though that people don't always know what to say in these situations, and most people mean no ill will, it just comes out wrong. But please, I'd prefer you kept talking to us rather than avoiding us because you don't want to say the wrong thing!
Luckily, most people are beautiful. Actually, since we became aware of Charlie's situation, I've never been more in awe of people. I have learned that it is generally human nature to want to take care of each other. This is a situation which almost everyone can picture themselves in, and I have seen it break many hearts, which in turn fills mine up with gratitude and love. I'm not saying I want people to hurt like we do, I just really appreciate the empathy.
Charlie's breathing has gotten raspy this week which either means she's getting a cold (right before surgery) or she's becoming unable to handle her secretions properly...either way, it's bad news. When Matt and I see a new change in Charlie such as this, it reignites the fear of the future in us...we seem to go up and down in between the changes in Charlie. Right when we get used to something (no head control) we get a new ailment (difficulty breathing) SMA really keeps us on our toes. We have an appointment this week to get Charlie fitted for some foot splints, her feet are starting to curl closed. We were also told to make sure we exercise her legs because they are stiffening up in the 'frog' position, so we've been working on that as well.
I'm really anxious about both a long AND a short future with Charlie. If she's here for a longer time, my new career is nurse Cherie. I will be suctioning her, feeding her through a g-tube, exercising her, performing CPR, medicating her, etc. And if she's only here a short time, I will spend my life missing her and forever feeling like a huge piece of me is missing. Obviously I am willing to do whatever it takes to to keep her with me/us as long as possible, I'm more worried about whether or not I can fulfill all of my duties as nurse Cherie. My friend Christie and I have some pretty good chats about life, marriage, babies, babies, babies, and careers...we were talking the other day and she asked me what my future plans were (because I'd just finished school for social work before getting pregnant) and I thought about it a second and said, "This is my job." and for a second (a fleeting second) I felt a little ripped off again. I don't get a choice in career anymore. This is it. Until it isn't it. And then my career will be mourning....how long does mourning last? Do you work while you mourn? I don't know the answers to these question, but I think about these things all the time. When you decide to get pregnant your future flashes before your eyes, babies, toddlers, kids, teens, adults...at least that's what I saw...so, I'm still getting used to things not turning out the way I/we thought they'd be.
My parents are on their way here right now. That's been a positive in this situation. We've gotten a lot closer since Charlie's diagnosis. My mom hasn't always been the best with expressing herself to me and I've always felt like she's never really acknowledged my success' in life, but lately, she tells me she loves me all of the time. She texts it to me and Matt almost every morning. She's also started telling me how proud of me she is and that I'm an awesome mother, and as much as the old rebellious teenager in me would like to think I don't care what my mom thinks, I totally appreciate the recognition and praise, it means the world to me, and it couldn't have come at a better time.