SwayBlog

Alan Lawrence has a son with Down’s Syndrome. As a photographer, he wanted to shine a light on the negative attitudes towards the condition – and his little boy showed him how

A few weeks before my son Wil was due, I was sitting at my computer working when I suddenly had the strangest feeling. Out of nowhere, I thought: there’s something about this child that’s going to make him different from our other children. I put it out of my mind. Then, closer to the birth, I had a similar experience and this time the thought I had was that our new baby would have Down’s syndrome.

At that time I knew nothing about, nor anyone with, Down’s syndrome. So, as casually as I could – because I didn’t want to worry her – I asked my wife, Nikki: “Honey, what are the risks of Down’s syndrome with this baby?” And she said something like, oh, they’re not very high … not much more than when we had our other kids.

She didn’t seem concerned at all, so I ignored the feeling. I didn’t really think of it again until we were there in the hospital, the day Wil arrived. I’m a photographer and we thought Wil would probably be our last child: so I thought, this is the moment to record his birth properly, with a video blog and a journal and lots of pictures. So there I was with my camera as my new son was looking at me for the first time and I noticed his eyes looked a lot different from my other kids’ eyes. They were almond shaped.

I thought, maybe I’m imagining this. Then the doctor came over and, after he’d congratulated me, he turned to a nurse and said, “I’m noticing some unique attributes to this child, do you agree?” And the nurse said yes, she did. They thought they were speaking in a code I didn’t understand, but I knew exactly what they were saying. This was my confirmation. Our baby had Down’s syndrome.

For me, the world stopped right there. I put down my camera. All these thoughts crowded into my mind: selfish thoughts, thoughts about how our other children were going to be affected by this little brother with Down’s syndrome, thoughts about how mine and Nikki’s lives would be curtailed by having him to raise. Thoughts about our plans and our dreams, and how this child’s birth would change everything.

The doctor told my wife, and we were both crying. But then there was a tiny miracle, and it seemed like the first of a series of miracles to me. Nikki was upset like me, but right from the start she was being positive. She was holding our little boy and she was saying, “It’s going to be OK. We’re going to figure this out. This is our son and we love him.”

That optimism seemed astonishing to me but it wasn’t enough, right in that moment. Our relatives were waiting outside but I was like, we can’t bring them in yet, I’m not ready for this. And then our other kids arrived, Wil’s two sisters, Gracie and Ali, and his brothers, Zac and Nik, and there was another tiny miracle. They ran to him and they were touching him and laughing and smiling at him, and talking about all the fun things they wanted to do with him. And I couldn’t help but be infected by it.

But Gracie, who was 12, had heard that there was a problem and I could see she was concerned. I took her out to get some drinks for the others and while we were out she said, “Is our baby sick?” And I said, “No, he won’t be sick. It’s just that he’ll grow up with a child’s mind.” And I could see how relieved she was because he wasn’t going to be sick, and always having a child’s mind didn’t seem that bad. That was another of those moments that gave me hope.

Meanwhile, back in the delivery room, I was getting messages from friends and family saying where’s the baby? Reluctantly, I took up my camera: but I was careful with what I posted, and in the first images I made sure Wil’s eyes were closed. I simply wasn’t ready to face what it meant to have a child with Down’s syndrome.

Googling Down’s syndrome was not positive, as I’d hoped: it took us a while to find positive articles. When we started to search online, everything seemed couched in negative terms, about what people with Down’s syndrome couldn’t do. But once Wil was home we stopped learning from the internet: instead we were learning from him and from other kind families who had children with Down’s and who reached out to us. And he was such a joy. Unlike some babies with Down’s syndrome he didn’t have a heart defect, so he was just an ordinary baby in so many ways: and not just an ordinary baby but a wonderful baby, a happy baby, a baby who brought so much joy into our lives. I guess it took me about three months to come to terms with it and to think: this is going to be fine. The only thing that will ever limit Wil is the barriers other people put on him. Anything he wants to do, he will do – through the hope of those who believe in him.

As a photographer, I wanted to do something visually to help counteract the negativity about Down’s syndrome and to share the joy and light Wil had brought into our home. By this stage, Wil was able to roll over on to his tummy: then he would arch his back, flap his arms behind his back and kick his legs as if he was trying to fly. It made us smile and laugh every time he did it. One evening I was in the house with Wil and Zac and I suddenly had this idea … I thought, Wil is trying to fly … let’s let him fly. I went outside and I held him up and I got Zac to click the shutter, and then I went back inside and I Photoshopped myself out. There it was: a picture of Wil, flying.

All the kids loved it. Then I put it on social media and it got a huge response from all our friends and wider family. So I took another picture and another: and soon my kids were saying, where is Wil going to fly next? I put the picture on some other social media accounts and it went viral. Everyone loved it.

What was great was that I’d been searching for this visual story to show my son and in a way all children with Down’s syndrome in a positive light: and it was Wil himself who helped me devise it, by showing us that he wanted to fly. And it made the point so beautifully. Wil has Down’s syndrome, but I know he can do anything he puts his mind to: so Wil can fly. We’ve had such a lot of fun as a family working out where Wil can fly: whenever we’ve been in a beautiful location near our home in Utah or on a day out, or doing some activity, Wil is there too – flying.

I’ve used images of Wil flying in a calendar that I sell to raise funds for Down’s syndrome charities, and I’m also hoping to publish a book. Wil is almost three now. We’ve got a new baby, so he’s a big brother. We plan on giving him the same responsibilities and chores as his siblings, and we have the same expectations of him. And he’s growing fast. The last time we did a photoshoot he looked at me as if to say, why are you holding me up? So I think the days of Wil flying in photographs are almost over. But the days of him flying in his life: well, they’re only just beginning …

As told to Joanna Moorhead

Alan blogs at thatdadblog.com, where you can see more images of Wil flying

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