A lifetime of memories: A priceless record of our limited days together

As children, most of us hoped we’d grow up, meet that one special person, and have children.

We assumed we’d live happily ever after, and all those bad things we kept hearing about could only happen to other people. Nope, those things would never happen to us.

But it turns out that I was one of those other people, and it happened to me.

My son was only 2 years old when we found out he had Duchenne Muscular Dystrophy, an incurable and terminal degenerative muscle disease. It is regarded as a sex-linked disease because the mutation that causes Duchenne occurs on the Y chromosome, so the vast majority of those affected are boys. Their muscles deteriorate and become useless, and that includes the heart and diaphragm.

They usually lose the ability to walk between the ages of 8 and 12, the use of their arms a few years later, and way too many die before their 20th birthday. There is no cure, and my son will die young. As you can imagine, the time we have with him will be short, precious, and compromised.

I’ve been an avid photographer since I was a teenager, and my love for it increased exponentially after the birth of my children, and even more since my son’s diagnosis. I feel an urgent need to capture every moment in my children’s lives. Every. Single. Moment.

I’m one of those mums who take their camera everywhere. I whip it out in coffee shops, amusement parks, school discos, birthday parties, weekend outings. I used to be self-conscious about being a camera-toting mum, but I no longer care what people think about it. The way I see it, my kids are the lucky ones who will have memories to cherish forever.

And that brings me to my son. On that devastating day when we found out about his disease, we made a promise. There will come a time when he’ll be confined to a bed, and we vowed to give him a lifetime of memories in pictures to look back on.

Taking photos of your own kids can be challenging. Adding a child with any sort of special needs ups the ante, big time. But it’s just as important (maybe more so) to capture their lives as you do your other kids’.

For me, having visual memories to share with your kids is priceless: “Remember when you rode that elephant in Thailand?” “Remember when your sister accidentally kicked out your front tooth?” “Remember that teddy bear you had as a baby?” My kids do remember because I have captured every one of those events.

My son looks back on them often, and reminisces with his siblings. They laugh, they cry, they squeal with delight. There are photos of them doing pretty much everything, from doctor appointments and hospital stays, to playdates and birthdays with friends, to shopping for Christmas and sightseeing on vacation.

That said, my son sometimes hates having his photograph taken. He feels self-conscious about the fact that he’s in a wheelchair, about his weight (thanks to 11 years of daily steroids and inability to exercise), and being unable to do what his siblings are doing. So I’ve come up with some methods of getting him in the frame.

At times when weight is an issue, I photograph him from above, a much more flattering angle. It also adds light to his face and eliminates shadows. Seeing the image on the back of my camera where his face doesn’t look as swollen as usual makes him smile. I love it when he smiles. I wish he’d smile all the time. I understand why he doesn’t.

Unfortunately, there’s nothing I can do to change the fact that he rides a wheelchair. So, to take the focus off the chair, I choose locations with beautiful backdrops. One of my favorite styles is what I’ve come to call “big world landscape portraiture.” I choose a beautiful location and position my kids in the frame to show how little they are in the big, big world. And because the backdrop is the focus, you barely notice the chair.

Sometimes he will be sad, reflective, or lonely. In fact, quite often. Usually I won’t photograph him when he’s like that, but every now and then I’ll take a quick photo. My reasoning is that our life is not overflowing with laughter and joy and happiness. It has a fair share of sadness and hardship. I want to remember that, as heartbreaking as it may be. That’s the way our life really is, and I don’t want to pretend it isn’t. There’s love and loving and coping here, too. And reflecting on the difficult and challenging moments makes one appreciate the good times much more. The most important thing is to capture the moments when life seems almost normal.

My son hates the fact he’s disabled, hates that he isn’t like most other kids. He struggles with not being able to do normal things like running or jumping or riding a bike. His disease is degenerative, which means that he achieves milestones, and then those milestones are snatched away from him. So, whilst he hates that he can no longer do things he used to do, he has the opportunity to look back on when he could.

One day, those images will be all that I have left. I sometimes wonder which is the better option: experiencing the joy that comes from achieving a milestone only to then relinquish it, or to never experience it at all. Both are bittersweet.

I photograph because I want to remember my son living. I want to remember all four of my children living.

I have learned the hard way that life can be uncertain and short and difficult, and that bad things really do happen to good people.

But life is also beautiful and precious and rewarding. That’s why it’s important to capture all those moments in our lives, the good, the bad and everything in between.

This article first appeared in the May/June 2017 issue of Click Magazine. Order your print or digital copy from the Click & Company Store. Or better yet, get a 1-year subscription so you never miss an issue!