Friday, August 27, 2010

On the road again.

(Charlie, 13 months, with mom & pops. Photo by Randal Kurt)

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, 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 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:

Saturday, August 21, 2010

Happy 14 month birthday Charlie-Anne!

(Charlie 14 months, and mommy, Bowen Island)

Tomorrow is Charlie's 14 month birthday. We are going to stay at a friends place at Black Mountain Ranch for 3 days, so we'll be celebrating there. Matt and I just finished our solo summer vacations, so we're looking forward to relaxing out of the city, all together as a family, and we're feeling pretty fortunate that our friend offered her place to us...thank you Leslie!

Last night I took Charlie to Bowen Island for the night. My friend Amie just moved into a stunning place there and another friend, Meaghan and myself, and our kids went for a sleepover. It was lovely. My favorite part was just watching all of the kids play together. I don't know what it is, but kids seem to know that there is something special about Charlie...they just seem to be particularly drawn to her, and they're so loving and gentle with her. It just melts me to watch Charlie interacting with other kids. She is so intrigued by these tiny people that run around at a hundred miles per hour, scanning the room for something new to put into their mouths. And she always chats more when other kids are around, and it's so cute, like she's showing off or thinking, "finally, somebody who can understand me!" And I realize that this is probably nothing out of the ordinary for parents of 'regular' children and that their children also react to their peers in the same ways, with excitement and vigor, but that's exactly why I savor it so much...because despite everything that is going on with Charlie and the fact that I/we can often feel so left out of the's so beautiful to witness Charlie developing just like any other child in a lot of ways, and that her likes and interests are pretty much the same things any other kid her age appreciates.

I am so in love with my little red head. She is such a calm and relaxed little girl who almost never fusses. This might be an unhealthy way for me to think, but Charlie really is my best friend, I spend more time with her than I do with anybody else...all day today I kept looking at her and thinking, "I would literally push, pull, or drag you around with me for life Charlie...and proudly!" And I would. I mean, obviously a cure would be nice, but if it doesn't happen, I will be doing my best to keep Charlie happy and healthy and here.

I'm gonna keep this short and sweet, we've got an early morning...Happy Birthday to my sweet, sweet, sweet, angel girl. I am so grateful you're mine. I love you more and more everyday Char, and so does your pops. Thank you for choosing us. xo

Monday, August 16, 2010

Quiet Time.

(Charlie, 13 months, photo by Randal Kurt)

Man, this blogging is getting harder and harder to do. When I first started this 6 months ago I had promised myself i'd write a new post at least twice a week, then as time went by, I revised my goal to once a, it's just whenever I can muster up the emotional energy. I think it has a lot to do with my recent moods...kinda sad, mostly sad, a little sad, a lot sad... I NEED to write when I'm sad, but at the same time, I get so annoyed with myself when I can't appreciate what I DO have in Charlie and this situation...and then it leads me straight down guilts path. And lately, because I'm mostly sad, and I spend most of my time being sad, why do I wanna write about being sad when/if I get a little break from it? But usually, even though I procrastinate and it's difficult to get started, the sad thoughts seem to flow out of me like a roaring river in a hurry to get somewhere, which almost always leaves me temporarily drained of my sadness. And I like that part.

I had a great time on Salt Spring island. The first night my friend Libby and I stayed in a remote little cabin where we drank wine, played cards and danced. The following two nights our friends Ivan and Marco came and joined us in a condo by the beach that we had rented. I met Ivan and Libby years ago at a Greek restraunt I used to work at, and they've since become really close friends of mine. They have been really amazing to me and Matt regarding Charlie...Ivan comes over often and makes us authentic Mexican food and takes me out whenever I need to relax, and Libby has joined the Adventure Challenge triathlon with me and we have been spending a lot of time working out together and talking about things. She's 8 years younger than me and has no children, but you'd never know it by her mature, empathetic, sensitive and compassionate nature. In all honesty, I never would have thought that she'd be someone I could lean on in a situation like this, if only because of her age, but she has proven herself to be a very valuable asset in my life. I am grateful to Libby and Ivan and Marco for taking me away and showing me a great time!

This might sound awful but, when I was away I kind of made a deal with myself that I wasn't going to talk about Charlie and I wasn't going to worry about her...I was going to sort of treat this vacation as if I was childless. I know, harsh...but, the alternative would have been to drink wine and cry and have panic attacks which would ultimately have me begging my friends to drop me off at the ferry early so that I could rush home to worry some more. All I wanted was a 4 day break. And I took it, and it felt the time, but then you come home and it's back to reality...a reality that is most peoples worst nightmare.

Obviously there were a few times while I was away that I couldn't help but think about Charlie and how things just weren't fair...the one that sticks out the most is when, on the first morning there, Libby and I went to a little pub for lunch and I noticed a young-ish family there...2 kids, a boy about 4 and a girl about 2...the couple seemed to loathe each other and I watched as they glared at one another and mumbled what looked like evil spells directed at each other. Then, the woman grabbed a napkin and very aggressively wiped her sons face and hands, so roughly that I honestly thought he'd be bleeding after. The boy stood up and she angrily put his coat on, one arm at a time, yanking his arms and shoving each one in like she forgot that they were attached to her son and instead thought they were her husbands face that she was imagining ripping off. The little girl was standing around quietly by this time, looking cute and sweet, just watching her moms actions like this was completely normal behavior. Then the boy got in some passing patrons way, and the mom quietly mumbled to the boy, "get the fuck over here you little piece of shit" with the most insane look on her face. And the dad just sat there and stared into space. I stared right at her, and so did Libby when she noticed I was distracted, and so did the customers behind the woman. And when the woman noticed she was being glared at, she avoided eye contact with us and changed her attitude. I was shocked. And pissed off. Everything in me wanted to stand up and say, "Umm excuse me, I noticed you abusing your kids and taking them for granted...well, I'm just wondering why my baby is at home dying and I love her more than anything in this world and would NEVER hurt her, yet someone thought it would be a good idea to give YOU two perfect, beautiful children!"
I feel guilty for not saying something, but I think we were all just in shock...and scared of her!

When I got home Matt told me that he was so glad to have had the alone time with Charlie. he said it made him fall more in love with her. That made me feel good... knowing that it wasn't just me being selfish, but that it was a good thing all around. But, by the next day, Matt and I were arguing again. We are so stressed. And when we need to choose between working on/dealing with Charlie stress or marriage stress, Charlie stress always wins. And, there is just absolutely no way that we could manage both at once, so i'm just praying that kind soul who gave that evil woman two beautiful, healthy children, will give us a break too sometime. Cause we're tired. Really tired.

Matt's away on Hornby Island right now, so it's my turn to have some private time with Charlie. And so far, so good. Tonight we built a little fort on the floor and watched movies till she passed out, it was a lot of fun. I will say though, that when I'm alone with Charlie, I think too much. I worry and I feel really alone. I've noticed that I'm constantly trying to fill up my days and nights with company, because when I don't, it hurts more. But, at the same time, I still feel a little like an outcast when I'm with friends, Charlie's future/our future is on hold and very uncertain, with a guarantee of darkness. No one wears these shoes. I remember when I got pregnant/gave birth/became a mother I suddenly had more in common with the people who'd experienced childbirth and had children and I was suddenly 'one of them'. And now, I feel more left out then if everybody around me had three children each that they couldn't stop gushing about, and I had none but desperately wanted one. But, sitting here typing this while Char snores beside me, reminds me why it's all worth it. She's STILL here, so we still have a lot to be thankful for.

Friday, August 6, 2010

Island Time.

(Charlie, 13 months old. Photo by Randal Kurt)

We met with Meralon and Randal this past Wednesday and they showed us our pictures...just beautiful! When they were showing us the slide show it took everything I had in me to contain my tears. Happy tears. We were just blown away. I really can't even begin to express the gratitude we have for the two strangers who found my blog and then reached out to us, giving us a gift we'll cherish forever...and two new supportive friends!
Here is the link to the slide show...
Thanks Randal and Meralon!

My parents came out to watch the Pride parade with me and my friends last week, they're not usually very spontaneous or wild, so having them here to celebrate with us meant a lot to me...especially because it was a last minute plan...usually they'd need a week or two of planning ahead before they came for a visit, especially in these circumstances, but they just went with the flow and ended up having an excellent time, and it turned out to be an amazing family day I'll never forget. It didn't come without some glitches one point I was looking out at the crowded street and I noticed a little girl about 3 years old running around and having the time of her life. She had bright red hair, like Charlie's, and all I could think was, "That's my daughter...that's supposed to be my daughter." I became a little obsessed with watching her...I looked around for her mother...weirdly hoping she'd look like me. She didn't, she had her daughters same flaming red locks. My heart was racing and I kept saying to my mom, "It's Charlie, It's Charlie!" I pulled out my camera and got it ready to take a picture of her...the little girl that was supposed to be MY daughter, but as soon as I had it aimed and ready to go, I froze and said to my mom, "What am I doing?! I'm a creep, what am I trying to do, torture myself?!" My mom suggested I put the camera away, "Don't do that to yourself" she said. I didn't. I walked back into the pub where we were watching the parade from and convinced myself to drop it and have a good time. And I did for another couple of hours, until dinner when I started crying in the restaurant while trying to explain to my parents how awful this situation really is, "the worst thing ever, ever." And they comforted me, but what can they really say? Cause it is, and they know it. And no one can ever convince me otherwise.

Matt and I continue to be stressed out. And we take it out on each other. We're smart enough to know what we're doing and that its no good for us, but alas, we still can't help it. On a positive note though, whenever the nurse is here, which is 2 or 3 days a week we have been hopping on our bikes and riding 25-30k at a time. Which is seriously THE BEST stress reliever I've ever found! Matt has already lost 15 pounds! So yeah, we can almost always agree on that lately. There is also one other thing we have recently agreed on...we have some big plans in the works...last week we had met some friends at the beach in Tsawassen and when we were leaving I saw a VW Westfalia for got me thinking. I started scheming and planning and I said to Matt, "HEY! just listen, hear me out..." He looked suspicious and said, "Hmmm...yes?" I then explained that, "We need a van soon, right?" Still suspicious, he said, "Yup." probably thinking, "What do you want now, Cherie" I went on to explain that we should look into a camper van and head to the hot spots during the winter because then Charlie would be less likely to get sick...I also said that I was finding it so difficult to just be carrying on with our lives here. I love my family and friends, but I just can't really relate to them right now and I just really feel like we got a warning with Charlie that many people don't get before they lose a loved one...I can't help but wonder, "What the hell are we doing wasting the little time that we do have with her?!" After I finished my spiel Matt looked at me and said, "I think that's the best idea you've ever had!" And so...the planning commenced! We're just hoping we can work everything out and be gone mid October or early November. Such a GREAT thing to agree on if you ask me. I really don't want to picture another winter hiding out and bathing ourselves in sanitizer. I get morbidly depressed just thinking about it.

Charlie has been doing really well lately. She's been moving her arms a lot more and grasping objects...and she just BEAMS with pride whenever she does. She'd still rather be watching Sesame Street, but when we turn it off and force her to play, she can get into it. I think that even if she could crawl or walk, she'd still be a little laid back observer rather than running around and getting into things. I was like that when I was little...I just LOVED to sit around and talk and talk and talk and talk. I wasn't lazy, I was just an intellectual. Ha ha.

I'm headed to Salt Spring Island sans Charlie this Sunday-Wednesday. Matt's staying home with her and I'm going up with a few friends. I'm really nervous about being trapped on an island while missing Charlie, but at the same time, I think I really need this. I need to be just me for a few days so that I can come home and really appreciate what I have. I can get so caught up in all of the things I don't have, and all of the ways I've been ripped off, when really, I have a lot to be grateful for. Charlie is the best thing that's EVER happened to me, that's why this hurts so bad, because she's that good.