By Louise Kinross
Zak Priest and his partner Kelsey LeCoure know the ins and outs of Holland Bloorview. Both were clients as children. Zak did kindergarten here and later met Kelsey at The Independence Program, where youth with disabilities live in a university residence and navigate the city. Zak has worked at our hospital as a research assistant, doing community outreach about disability in schools, and for our foundation. This past summer and fall, daughter Amelia, 3, spent several months as an inpatient following a surgery. Amelia and Kelsey both have a form of brittle bone disease. We spoke to Zak about parenting with a disability.
BLOOM: Tell us a bit about Amelia.
Zak Priest: She’s just a bundle of energy. She’s the biggest go-getter I’ve ever met in my life. If we could harness that power we would never have to pay energy bills. There are always ideas kicking around in that little head of hers. She loves learning, and now she loves reading. She knows the sounds of all the letters and can sit there with a simple book and scroll across with her finger and sound it out and it blows my mind.
If she wants to know something, she takes it in. It’s passion. She can name any instrument you throw at her. She knows the difference between an oboe and a clarinet.
Recently she discovered corporate logos. She loves to identify cars in a parking lot. ‘That’s a Nissan. That’s a Volkswagen.’
She loves playing the 20th Century Fox drum roll on her drums.
BLOOM: What is her medical condition?
Zak Priest: She has Osteogenesis imperfecta (OI), which is a type of brittle bones. I’d say she’s moderate to severe. She’s very fragile and breaks very easily. Because she’s a toddler and she wants to walk, she experiences a lot of what start as micro-fractures from the wear and tear. We’ve always been encouraged to make sure she has the opportunity to be as mobile as possible, because muscle growth helps strengthen bones. About a year ago she had a bad fracture in her left leg which required rodding surgery. After she recovered from that she had another break, which led to our inpatient stay at Holland Bloorview.
BLOOM: What have been the greatest joys of parenting Amelia?
Zak Priest: The learning aspect. I love seeing her excitement for things and when things click. Recently she’s discovered that Daddy is a pretty big nerd. I love my Star Wars and video games. On her own, by going through YouTube on her iPad, she discovered Mario and she fell in love with that little world of characters. She put two and two together and realized we could play the game together, and it’s been such a great experience.
I love seeing her grow. I think it’s the coolest thing.
I’ve got a little person now who has likes and dislikes and fears and things she wants to do and things she doesn’t want to do and things she wants to try. It’s amazing to see that little spark go off.
BLOOM: What’s been the greatest challenge?
Zak Priest: All the physical tasks that I can’t help with.
BLOOM: You have minimal use of your hands, right?
Zak Priest: Yes. There’s a lot you have to do physically with her, from changing her diaper and helping put her clothes on to feeding her. Right now her leg is bad, so she’s not really moving a lot on her own and Kelsey has to move her. It’s heart-wrenching to be present and be there and not have a hand in it. I hate that Kelsey is on 100 per cent of the time. During the night Kelsey is on with no break. My staff help me get into bed at night and when I’m in bed I can’t transfer or get up until someone comes in the morning to get me up.
On the other hand, now that Amelia is getting older she’s more interactive and my role as a dad is shifting because we can talk. She can understand and we can communicate back and forth. For the most part she plays independently, so when I’m up I can take charge on days where Kelsey wants to sit down or have a nap during the day.
BLOOM: What was your reaction when you learned Amelia had OI?
Zak Priest: We knew going in there was a fairly high chance. It’s genetic. I think the numbers were 50/50. As we’re both people with disabilities, we’re used to planning a lot for everything in our life. I think going into it was easier because it was something we planned for.
We were seen at the specialized Sunnybrook clinic for pregnant women with disabilities. They were so fantastic. Initially they didn’t think Amelia had OI so we thought if she has it, it must be mild. It’s been an eye-opening experience to learn that it’s more severe. It is tough. It’s not easy, but with my life, you learn to roll with the punches.
BLOOM: Is there anything you do to cope with stress?
Zak Priest: We’re very much home bodies. We bond over the fact that we’re most happy in our comfy pants sitting in our living room with a good coffee or tea. I love playing videos games and I listen to audiobooks a lot. When the weather is nicer I love going for walks. Kelsey and I are TV watchers. We find different series.
Things are stressful. I would be silly to try to convince you they’re not. But I think my stress levels are kept in check because in a sense it’s not new stress. Amelia’s life is an extension of our life. We’ve been living with a disability and dealing with these kinds of stresses our whole life. There are physical challenges. But in a way we’re uniquely equipped to deal with these kind of situations because of our personal experience.
BLOOM: We interviewed the author of an Australian book about disabled parents. She has a new version with stories from Canadian, American and British families coming out. Almost all of them had pushback from medical professionals or friends or family who questioned what they were doing.
Zak Priest: Kelsey did have one bad experience with a doctor. She went to a walk-in clinic to do a formal pregnancy test because she couldn’t get an appointment with her doctor. Her leg was hurting that day, so she went in her manual chair. I can’t remember the actual words, but the doctor assumed the next steps were going to be an abortion. We had been together for seven or eight years at this point and we were quite well established and it was something we were excited about. That really put a damper on it.
I think a common thread with family is a lot of worry.
BLOOM: What was your experience with the accessible care pregnancy clinic at Sunnybrook?
Zak Priest: It was brilliant. The second Kelsey knew she was pregnant she knew the number to call. They did everything in their power to make it the classic ‘going to your doctor while pregnant’ experience. They had special scales so Kelsey could be weighed in her wheelchair during appointments.
Because of Amelia’s diagnosis, a C-section was planned. They came in with a big huge special gown to put over my chair and a hair net. I assumed I was waiting outside and they said ‘Oh no, you’re going to the OR.” They had cleared out the room so there was room for my chair so I could be there for the experience. When Amelia was born she was put on oxygen and they had a table that moved lower so I could stay there with her in that initial moment. They were brilliant.
BLOOM: What advice would you give a disabled person who wants to be a parent?
Zak Priest: Maybe it’s not fun and exciting and spontaneous, but a lot of planning helps. Try to think of stuff ahead. But to contradict myself, you also need to be flexible, because there will be so many different wrenches thrown your way. As someone with a disability, I would say my best skill is problem-solving. I’ve been forced to become a good problem-solver.
Not everything will be perfect and you have to be ready for challenges and hearing some things you’re not going to want to hear. It’s also a reality that as someone with a disability you’re not going to be able to do everything. You’re not going to have the same experience that you see on that TLC A Baby Story show. You’re not going to have that fairy-tale experience. There will be roadblocks and there will be physical barriers and you have to be ready to navigate them.
Be ready to problem solve. Be ready for something that’s hard, but also rewarding.
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