This past Monday Matt and I went and spent the night at my parents place. They watched Charlie while we hiked Teapot hill and when we got back we showered and we all went for dinner. When we got back to my parents place we'd had a few drinks when we decided that it'd be a good idea to scroll through all of our old pictures of Charlie from newborn to now...what a mistake that was. Matt and I haven't really been the same since. When you're living with this on a daily basis, the changes can sneak past you...kind of like when someone you see on a regular basis loses 20 pounds over six months and you notice the difference in them but don't really notice the dramatic change until you see an old picture of them. We realized that only 5 months ago Charlie was sitting upright almost unsupported, when now it is almost impossible to find a comfortable upright position for her nearly completely limp body. She IS using her forearms and hands MORE than ever though, so that is a positive. It was just a rude awakening, like someone threw a glass of ice cold water in our faces when we weren't expecting it.
I've still been breastfeeding Charlie a couple of times a day, but I think that's coming to a halt as well. Today on two occasions I noticed milk on the bed and coming out of her nose a little, which suggests to me that she's losing her ability to swallow and it's pooling up in her mouth, and when it doesn't have anywhere to go, exiting out her nose. I still feel fortunate though that I was able to breastfeed her for this long...'normal' children are usually weaned right about now anyway. But I just don't like thinking about what this signal implies. She's getting worse. And, yes, we know that getting sicker/worse is the only way Charlie is going to go, but I think that although Matt and I have never really discussed it, we have both had our head in the clouds and have been secretly thinking Charlie was going to be "the one". The one that either beats SMA or the one that coasts along smoothly, beating all the odds, cause she's a 'little fighter'. I've always disliked that term (little fighter)...like when someone 'beats' breast cancer and people say, "Oh, she was a fighter, she wasn't gonna let cancer take her down." To me that suggests that anyone that 'lost' their battle with cancer (or whatever disease/ailment/accident they had or were involved in) was weak and ready to go...it just sounds so negative and disrespectful to me...but that's just my opinion. Maybe I just feel like I need to defend Charlie, I think she is the toughest baby I have ever met and I'll always feel that way about her, even when she 'loses' her fight with SMA.
I've realized a couple of things about myself lately...one is that I'm commitment phobic (i know, I'm married, so how does that even work?) and the other being that no matter how many people we have in our lives, and no matter how negative this sounds, we are all alone, now and in the end. This situation with Charlie has shown me that even though I've had long term relationships and even though I'm married now, I've always had one foot out the door and prepared myself for the worst, which has usually been a self fulfilling prophecy, because I was afraid of giving into something and being hurt or disappointed or being trapped, this goes for my education and goal setting as well...I could never commit to anything. How does this even have anything to do with Charlie? Well, this situation in itself is a huge commitment (not to mention just having a baby in the first place). Matt and I are bound to her, and bound to each other. She needs us, both of us. For the first time in my life, I don't have the time or energy to be questioning my place in this world or mine and Matt's marriage or my commitment as a mother. I'm not even overly anxious anymore...my anxiety was caused by being overly reflective and constantly worrying about myself , and instead of focusing on me and my needs, I'm all about Charlie and what she needs. Charlie is busy saving me from my neurotic self.
As for being all alone...no matter how many people I'm surrounded with, I'm still ultimately alone. By that I just mean that nobody can feel what I feel. And I won't feel what Matt feels. And we are both dealing with this in our own way, and honestly I feel like we're usually too exhausted with our thoughts to even discuss them out loud with each other. That and we don't always know how to express ourselves...and I also think we're busy protecting one another, and don't want to lay our worries and fears on the other because we know their plate is already overflowing. And as for my friends, I love them and they are all so good to me, but it's hard to share a breaking heart...and it must be hard for them to understand my breaking heart and to know what to do with it. Nobody can make this feel better. Not my husband, not my mommy, and not my friends...I guess that is what I mean about being alone.
Charlie's big 1st birthday bash is only a month away. We're so excited about it. I think being with our friends and family to celebrate such an important milestone in Charlie's life will help lift our spirits and give us the fuel we need to stay positive for Charlie. Can't wait!