I have always felt it is my duty as a mom to capture at least a few* good pictures of Sienna each month. (*a few = 100). After Sienna’s diagnosis last year, I took a couple of months off. We were in shock, we moved, and we launched Sienna’s first fundraising campaign. But mostly, it wasn’t a time that I particularly wanted to remember.
Now that we’ve found our footing again, I have become a little obsessive about documenting the happy times. But sometimes I wonder if my desire to capture the moment is starting to get in the way of living the moment.
Some of the time, Sienna gets annoyed with the paparazzi act and I worry that I am creating a lifelong aversion to being photographed.
“No pictures, Mommy, I’m busy!”
Other times, thanks mostly to a new camera with lightning-fast shutterspeed, I have been able to capture moments as they happen!
Mid jump!
Mid-kiss!
Mid-squeal!
But what about the non-recorded moments?
Sometimes when there’s no camera in sight and I am just living in the moment – particularly the really great moments – I feel guilty. Suddenly I can no longer enjoy the moment because I realize this is the only time I will get to experience THIS moment. How will I ever remember her smile, how hard she laughed, or that funny thing she said if I don’t have them on tape?
And then there are the FOP-specific worries: What if her shoulders lock up tomorrow and this is the last time she is able to crawl around and bark like a puppy? What if she loses motion in that arm tomorrow and she can never again reach the shelf in her toy kitchen to make – as she calls it – a “peanut butter and jelly bean sandwich”?
What about all of you? Is this a new kind of crazy inspired by FOP or is this a struggle that all parents go through? What’s the right balance for living your life vs. recording it?
Rare Mom 
i agree 100%, being a photographer I always snapped pics of the kids…ok ALL the time…however things have changed since diagnosis & I too have the same questions, what if what if what if…I know that I will be happy to have them when she can no longer do these things, but I also wonder (was just thinking of this yesterday) if it will make her sad, or us sad, to see what she used to be able to do…if it will be upsetting & fill any of us with anger or hate (for FOP or otherwise). it is definitely a conflicting thing in our house…however, I havent stopped taking the pictures. I just can’t. Its like you said, living in it & capturing it are 2 different things, but when the moment passes, whose to say the memories will stay so fresh in our mind. For now we are doing everything we can to make sure we preserve these moments, with video & pictures. FYI, video only started after the diagnosis…
Great points, thanks!!
Maybe rather than sadness that our girls can no longer do certain things, we can look at the pictures as what the girls can get back to once we have an effective treatment or a cure ready? 🙂
I completely agree! It is such a dilemma. I hate interrupting them with picture taking. sometimes even just the presence of a camera or video camera changes how they are acting. That being said, I LOVE looking back at the pictures and remembering them as they will never be again!
Great point on the camera changing how they are acting – I wish there was a way I could get great shots without having to be so obvious about it!
I have never been much of a photographer – I’m terrible at framing the photo and I never seem to remember to pull out my camera. My husband, however, loves taking photos. And I appreciate being able to look back at the pictures he’s taken, but I do sometimes want him to put down the camera and embrace the moment more. And I agree with the comment above that kids start acting differently if the camera is on them and maybe they notice that we are not really in the moment with them. Part of it probably has to do with the digital camera – since you can see the photos as you take them, it’s easy to cross the line from just wanting to capture the moment to getting the “perfect” picture. It’s hard to just put the camera down. Since photography is not my thing, but I do want to remember the little moments, I use this “One Line a Day” book to jot down what we did each day, what toys the kids are into lately, funny things they say, etc.. http://www.amazon.com/Moms-One-Line-Day-Five-Year/dp/0811874907. It’s pretty low pressure since it’s just a couple of lines each day and I don’t always write in it every day. But I LOVE being able to go back and read what the kids were up to at this time last year – I feel like it helps me retain those sweet little moments that I probably wouldn’t carry with me otherwise.
I keep a monthly scrapbook where I put in the month’s top pictures and write in Sienna’s funniest sayings – but I am going to look up that book! I think that could make it much easier to record more of them! Thanks!!
You know what’s funny? Even as I was reading your blog (very good, by the way), I was looking at the pictures and a part of my brain was thinking, “Whoa, look how well she can move her shoulders, how lucky that Rory got pictures of that…” Don’t stop taking the photos! Just snap a few, then put down the camera and have fun too. 🙂
Karen, I was actually thinking about you when I wrote this. I remember your post about one of the last pictures you have of Miranda when she had full use of her arms. I have some similar “milestone pictures” that I treasure – we coincidentally did a photo shoot with a professional photographer last year the day before we first noticed a swelling on her neck. I always think of those pictures as the “before”… But good reminder to have some fun too! I need to get better at that 🙂
Mama takes pictures of us ALL THE TIME. Even when we’re crying. This makes us mad. And Dada mad. But secretly, we’re all happy to have the pictures.