There are good days, and bad days, and bad days, and bad days, and good days. And lately, good days. Ahhhhh...we really needed these good days. We had a fantastic time away at Black Mountain Ranch. Matt and I had almost literally been at each others throats for what seemed like forever and then FINALLY...we weren't. We went away together and were able to climb back up the rope that just days before, we were at the end of. Vacations are glorious little escapes that really don't get the credit they deserve, they should be mandatory for couples, especially families. Maybe the world would run a little more smoothly if we were all forced to take time off and go away, especially in times of stress. Matt and I spent our time making future plans, staring at Charlie, showing her horses, taking her swimming, and oddly enough, for a 14 month old child, taking her on her first swing. That was an especially emotional moment for us...I sat on a swing, put Charlie on my lap, and swung back and forth, back and forth, while she smiled and giggled...and then I started crying. It was a little bit of happy and a lot of sad cry. I was happy she was so happy, but sad because she was so happy, and I couldn't help but think about a time when we won't be able to do this anymore to make her happy. Matt was a little caught off guard with my tears and instantly realized how much this situation has been affecting me and began to console me and promised to try to be more understanding of my own personal anguish about Charlie, and in that moment I too realized how invested in Charlie and I he really is, and where his angry outbursts at life are coming from...so, I'm also going to try a little harder to be understanding of his pain and pressures.
Lately though, I've been feeling a little stagnant. Talking to some of my stay at home mom friends, I realize this is a common conundrum. I want to be the best mother I can be to Charlie, but I still have that nagging desire inside of me to do something else as well. I had just finished school before Char was born and I feel the urge to use it, to get up, get ready, and get going to work, to make money and contribute to our household. But, at the same time, I feel selfish and confused in thinking this. Why would I leave the house 3 to 5 days a week for 8-10 hours a day to go to work in the social services sector, when I have my own sad story at home that needs taking care of? And, because our time with Charlie is so short, why would I go and shorten it even more? I don't want any regrets, and If I answer my own need for individuality and independence and something happened to Charlie while I was working, I'd NEVER forgive myself, when she does pass away, will I forever punish myself for not taking advantage of all the time I did have with her, instead putting my own needs before hers? What kind of job could I get? "Umm yeah, I'll work really hard for you, except when I have to take months off at a time to sit by my terminally ill child's bedside when she catches the common cold." I'm not sure how well that would go over. I think that one of the main reasons I've even been feeling this way is because when Charlie was first diagnosed we were told she only had a few months to live, it's 8 months later and she's still here. She's the only baby I've ever raised, so this is all I know, so I'm kind of getting used to it. This is the way my daughter lives, this is what she needs, this is how she eats, and this is how she plays. And because we haven't had any major scares yet, I think my brain has sort of tricked itself into thinking she's disabled, not terminally ill. And I only ever realize the difference when she coughs, or tries too, and I see her eyes water and her gasping for air...when I see this I'm reminded of how weak she really is and how fortunate we really are that she's still here and to NEVER take it for granted.
I am also reminded that Charlie is not like other children when I spend time with other children. I was at a friends the other day and she is in the early stages of potty training her daughter. Obviously, I'm aware that this is the natural progression for a child, but since having Charlie, and then finding out that she was sick, it had never really occurred to me. And when it did the other day, I felt ripped off again. I guess i just sort of feel like a hamster on a wheel...like we are just going nowhere fast. And I hate admitting that...I feel guilty. But, it all just seems so futile to me sometimes. There will be no potty training for Charlie. No crawling. No walking. No daycare worries...I mean, at this point I've been secretly praying she even stops growing. She's been growing like a weed! And, in a perfect world I'd invite and encourage it, and be proud of it, but I don't want the day to come where I can't safely pick her up anymore...If she's going to be sick and weak, I want her to always be my little baby, so I can always hold her close to me.
Our travel plans for the fall/winter are still a work in progress. All we do know right now, is that we are scared shitless of cold and flu season and we need to escape as much of it as possible. But how, we really don't know yet. We tossed around the camper van idea, but being realistic, Matt and I have a hard time getting along in 1100 sq ft...I don't think cramped quarters long term is the solution for that...but, I'll never say never. We're doing this for Charlie, not for us, and if that's what it takes, we'll do it. There are a few other options we're mulling over, so we're just doing our research right now and seeing what will work best for all of us. All I know is that I can smell fall out there and it's making me anxious...we need to work something out FAST!
I just bought a book that was recommended by a friend called, 'The Boy in the Moon' by a Canadian author, Ian Brown, it's the true story of a father who's son has a very rare genetic condition...I'm gonna go lay down in bed next to my sweet Char and crack it open now.
Here's the link to our Black Mountain Ranch video/slideshow: