I take a lot of pictures of John. A LOT. I used to carry the camera around and take quick pictures when something seemed worthwhile. Now that the camera on my phone is a little better, I’ll take five or ten pictures any old time. Like many parents, I’m endlessly, obnoxiously interested in even the smallest moment. It’s my way of trying to hold on to this swiftly passing childhood.
Despite all this picture taking, photographic evidence of me with John is pretty rare. I’m not a big center-of-attention person. When people try to take pictures of me, I generally turn away. Instead, I’m the one behind the camera. I’m the shadow of a thumb over a lens. I’m the hands holding the birthday cake. I’m the disembodied voice in the video.
But lately, I’ve been rethinking my face-hiding stance.
When I found out last winter that I have MS, considering how John would be affected was one of the worst parts. Even thinking about it is like looking toward the sun – you just instinctively pull away. But it’s still there. How will his life change, and how will he know me over the coming years?
I don’t think of myself as a person with any disability. Because I’ve lived like this for 40 years, I don’t think my perception of myself will change, even if my abilities do. But John’s only seven. If I become more challenged in the next few years, or even in the next ten years, that will be the majority of his life. Will he think of me the way I think of myself, or as a person who can’t do everything she might like to do?
I’m finding that having photos of myself with John reassures me that there will be a record of the two of us together, just as things are now. A photo is not a memory, but it’s a prompt for one. It’s a start. And if things change, then it’s a way for me — and hopefully for John — to hang onto a piece of how we are right now.
So it’s a small change but a significant one: now I sometimes stay in the picture. The photo above and the ones below were taken by my friend Pam Quinn, who is incredible. These pictures look the way I feel – happy, healthy. They’re already nice to have, but thinking ten or twenty years down the line, they’ll also be a truly priceless reminder of what this summer feels like.
steady she goes 
Great pictures. A professor at Law school said never say never and always avoid always, but, you never know…
I LOVE this. Good for us all to remember because things don’t stay the same and what is today won’t be even a year from now. But there are also experiences that are stand alone that will never happen again that need to be captured and savored. Thank you for this perspective.
Thank you so very much for this posting. The two of you are beautiful!
These are beautiful pictures of a loving relationship. Thank you so much, Katie. I understand so well the fears you describe, of being known by your child only as someone who can’t do what other people’s mothers do. I wonder if there’s a website for parents dealing with this? There should be. My children were long grown up when I was diagnosed with MS. My symptoms have progressed slowly but relentlessly since then. I worried terribly about being able to be a grandmother to my four grandchildren. But it’s all working. They now range in age from 7 to 17; they are, I think, more thoughtful and kind than they would be without a Nana to help out and do things with. They help me make bread and water plants and take out the garbage; I go to baseball games with them, and my grandson and I have a running joke about Jeeves and Wooster (he’s Jeeves, of course). Love is love and it will always find a way. Trust that.
Thank you for this – I really appreciate that perspective.