Kelly O’Brien’s second pregnancy was uneventful. When her son, Teddy, was born she was told by the doctor that her baby had contracted a virus in-utero. Without any symptoms or signs during pregnancy O’Brien and her family had to face a shocking reality that her son has “extensive brain damage”. Teddy would not be able to walk or talk without any assistance. O’Brien began documenting her days taking the challenges and coming to terms with what life has dealt her and her family.
We had a chance to interview Kelly O’Brien at the WorldWide Premiere screening of her very personal documentary, SOFTENING, during the HotDocs Film Festival.
When did the doctors raise the redflags?
I didn’t know something was wrong until after he was born. The pregnancy was easier than my first, the prenatal tests all came back normal, and the birth went relatively smoothly.
You realized that friends and family didn’t know what to say…what would you have hoped they have said instead of “I’m so sorry”?
This is hard to answer. People don’t know what to say when tragedy strikes; it makes most people uncomfortable and nervous. I understand that now, years later, and don’t feel the same anger and frustration I did then. I was also so grief-stricken those first few years that I retreated from the world. I wasn’t the easiest person to be around, so I’m not sure if anything friends or family could’ve said would’ve made a difference.
My advice would be: if you know someone going through a similarly difficult situation, don’t make it your tragedy. Try to reach out as much as you can, ask how you can help, even if it’s in the most practical ways, like bringing over dinner or making a phone call. The little things mean a lot.
I’ve heard the saying “Life (or some say God) won’t give you anything you can’t handle.” how do you feel about that?
Most of the time I still feel like, no matter how hard I try, I’m not handling it very well or as best as I can. I wish I was stronger; I always feel like I’m never doing enough for Teddy. So I don’t buy all those platitudes, like “you get what you can handle” or “things happen for a reason” or “it’s a blessing in disguise.” I think life is unfair. Bad things happen to good people all over the world for no good reason. There’s this quote by the poet Mary Karr that makes more sense to me “…what’s so gorgeous about humanity. It doesn’t matter how bleak our daily lives are, we still fight for the light…. We lean into love.” I guess that’s what I strive for – light and love.
Getting use to the new normal…what is a normal day for you as a mom?
There’s never a normal day. Nothing is ever routine with a kid like Teddy.
The film is part filmed in a nostalgic black/white, a vision almost dream or ideal state. It’s very captivating. What does this represent for you.
I wanted the film to be raw and honest, but also poetic and beautiful. There’s a lot of fear around disability; it makes people uncomfortable. I wanted people to see the beauty in Teddy, in our life with him. I hope the dreamy, almost ethereal, b/w film footage conveys that.
Clearly you love Teddy, there’s no doubt, how hard was it to decide to then have Willow ? Fear and hope must have gone through your mind.
To be honest, I worried so much about our oldest daughter’s future after Teddy was born. I didn’t want her to be left alone to look after him. I also knew that if I could get over my fear, having another child might be healing. So I longed for another child but it took my husband and I a long time to get to a place where we seriously considered it, and by that point I was 44. I eventually broached the topic with my family doctor and she was surprisingly supportive. I worried she’d think I was crazy. Her support gave me the little push we needed to start trying. My pregnancy with Willow and the complications of her birth provide enough drama for another movie, but once she was born and we were told she was okay something shifted. Willow couldn’t take away the sadness I felt for what happened to Teddy, she couldn’t fix the past, but she’s brought a renewed sense of joy to our family.
What do you want to tell moms, especially, with children who have health issues and those who don’t?
One of the doctors who spoke to us after Teddy was born told us that we would have to learn what most people don’t learn in a lifetime – to not compare, to try to appreciate what you have.
Emma is wise beyond her years. She spoke her mind without hesitation and with such great realization of what the future holds. As her mom, what would you want her to know?
As his older sister, Emma will feel the weight of responsibility that both Terence and I feel for Teddy now – it’s unavoidable. But ideally, I want her to grow up without seeing Teddy as a burden, but as someone who makes her life richer and fuller.
I love Teddy, more than anything. He’s full of love and laughter. My friends always remark on what a happy kid he is. They say it’s only me who’s sad, Teddy’s not sad. But I worry so much about him. I worry about the future. And then there’s our day-to-day life – he’s a handful and raising him takes more patience and strength than I was born with. But the one thing I know for sure is that each day he helps me be a better, kinder person.
HotDocs Film Festival 2013 | Canadian Spectrum
Canada | English | World Premiere