Ep. 18 | Brian and Joyce Doerksen | Parenting Through Shifting Expectations
~ Joyce Doerksen
In this episode, Brian and Joyce Doerksen describe their lament, learning and shifting expectations as they journey through the unanticipated diagnosis of Fragile X Syndrome upon their six children. Fragile X is the #1 inherited mental disorder with mild to acute effects on brain development. With their children now adults, the Doerksens reflect on what sustains their family, their marriage and their joy.
Brian and Joyce DoerksenBrian and Joyce Doerksen foster a dynamic caring life, which includes raising children with unique needs. Two of their six children are severely impacted by a genetically inherited condition called Fragile X syndrome. Brian is an International and Juno award winning singer/songwriter. He and Joyce have been married for over 30 years. Their creatively infused partnership reflects the wonder and struggle of vibrant family life.
Transcript – Ep. 18 | Brian + Joyce Doerksen | Parenting Through Shifting Expectations
Rachel Cram – Brian and Joyce, it is such a pleasure to get to sit around this table with you and to hear more of your story and who you are as a couple as parents as people. So thank you for being here.
Joyce Doerksen – Thanks for having us.
Brian Doerksen – Great to be here.
Rachel Cram – I’m going to start with a question that I typically open our interviews with and maybe Brian I’m going to start with you. Aristotle stated, “Give me a child at 7 and I will show you the adult.” Is there a story or an experience from your childhood that has shaped the adult that you are today.
Brian Doerksen – I would say, one of the vivid memories of my childhood, I don’t know exactly how old I was, maybe I was seven, eight, nine. My brother is older than me, bigger than me, better than me at lots of things and he wanted me to come outside. “Brian. Brian. Let’s go.” We’re gonna go play baseball or something, you know, where I get whooped again. And I and I gave him that kind of like a look and I said, basically like, leave me alone. Because what I was doing was sitting on the floor, perfectly positioned between two stereo speakers. The turntable was on and I was listening to music.
Why would you want to go outside and be whooped by your older brother when you could sit there in the perfect spot in that stereo image and hear these guitars and these voices. So there I was.
Rachel Cram – Do you remember what you were listening to?
Brian Doerksen – The record collection when I was a boy was fairly limited because my parents were fairly conservative. But, at that point it didn’t really matter what it was because listening to that music transported me somewhere else. And, you know, I still do a thing called Vinal at Five, where I still get out of record and drop the needle and sit there in that perfect spot and just listen to the album. Just taking it in.
At that point as a kid, I would have never dreamed that I’d become a songwriter and earn my living through music. It wasn’t about any of those things. It was just about losing myself in the music.
Rachel Cram – Joyce, do you have a story or experience from your childhood that shaped who you are as an adult?
Joyce Doerksen – I think I was a bit more on the childlike wonder side. I created doll houses and little fairs where people could come by in the neighborhood. Kool-Aid stands. I sold regal stationery from the time I was five till I was twelve. I went to all my neighbors and introduced myself and asked if they wanted to look at my magazine and,
Brian Doerksen – I so wish you would come knock on my door.
Joyce Doerksen – I could think that maybe I’m not an artist like Brian but I’ve realized as I’ve gotten older that I’m actually very creative. I’m learning some new things lately. More expressions now that my kids are a bit older, of how I can express my creativity. I’m definitely creative but very earthy at the same time.
Rachel Cram – A different kind of artist.
Joyce Doerksen – Yeah.
Rachel Cram – Now Brian, you’re saying you wish that she’d come knock on your door, like you had to wait so long to meet her. But you guys got together when you were 15!
Brian Doerksen – Oh my goodness! Yeah, that’s part of the joke.
Joyce Doerksen – You were a bit younger when you were driving by my house.
Brian Doerksen – And by the time I was 13 I had already set my eyes on her. And inside myself I said, “she’s going to be the one for me.” And I found out where she lived and I would drive my little bicycle past her property hoping to get a glimpse. That’s kind of freaky but hey it all worked out in the end.
Joyce Doerksen – At 13 it works.
Rachel Cram – So, how many years have you been married now?
Joyce Doerksen – This year, 35.
Brian Doerksen – Well, we met when we were 13. Started dating when we were 15. Married one week after I turned 19.
Rachel Cram – Well I think often as parents, like thinking of your parents, you can think your children are just too young to make such a life changing decision. And there’s a lot of validity in that.
Brian Doerksen – Yes.
Rachel Cram – But you figured out how to make it work. So can you tell more about your journey you went on to have six children.
Brian Doerksen – Wow, yeah. It was probably a really good thing that we didn’t have children right away. You know, we had lots of big dreams. We were gonna make an impact and
Rachel Cram – An impact how? What was your vision at that time? What was your picture?
Brian Doerksen – I think it was a vision, that was through the things we did, through what we created, we would make an impact spiritually, culturally, artistically,
Joyce Doerksen – But also, just raising a happy healthy family too.
Rachel Cram – What in your relatively short years on this planet had geared you to thinking that you and your children could make a difference? What was fueling that in your mind?
Joyce Doerksen – We hadn’t started birthing these children yet.
Brian Doerksen – Yeah, it’s one thing to have dreams and make these plans. And then the real versions of those plans and dreams show up and then they shift things.
Joyce Doerksen – And you realize what your limitations are. And it didn’t take us very long to realize we’re very normal, very weak in a lot of ways. I think still, our heart to love and to be loved was a big part of our life.
Rachel Cram – When we start to raise children, you can have a lot of hopes and dreams. And as your family grows and as you grow as people, those hopes and dreams will shift. Can you talk a little bit about how that process has carried on as you’ve raised your six children?
Brian Doerksen – Well the really big shift started when we had our third child and we started seeing signs that he wasn’t hitting milestones, that he had communication issues. Our friends and people around us said, “Oh, he’s just a bit developmentally delayed. You know, it’s no big deal. Just hang on.” And we got to a point where we realized that there is something fundamentally at the very core of who he is, that there is a condition, something is blocking his development. And we found out that that was fragile X syndrome and that he would require support for the rest of his life. So that was KAPOW. You know, you talk about a shift.
Joyce Doerksen – When we found out his diagnosis our twin girls had just been born.
Rachel Cram – So you had two girls and then you had your son.
Joyce Doerksen – Isaiah. And then, because it was very new, the realization of what fragile X syndrome was, its the most common cause of an inherited mental disability. So Down’s Syndrome is not inherited. That’s the most common cause. And Fragile X is the biggest form of an inherited mental disability.
Rachel Cram – So. Can you…Oh, Brian..
Brian Doerksen – Do you want, do you know what the textbook definition is?
Rachel Cram – Do you want to pull it up?
Brian Doerksen – I’m gonna just try.
So, Fragile X Syndrome is a genetic disorder. It’s mild to moderate intellectual developmental disability. So the average IQ in males is under 55. You’ll have some physical features, a long narrow face, larger ears, and they have a lot of autistic behaviors.
Rachel Cram – So your son Isaiah. How old was he when you started to get him tested?
Brian Doerksen – So we have two boys. Benjamin is our first. So that was the shift moment for us. And he would have been,
Joyce Doerksen – He was three years old when we started the process.
And I’m the carrier of it. Which we did not know at all until after our five children were born. And they all carry different degrees of it. And it wasn’t until Isaiah that we found out that he, as well, had it.
Rachel Cram – So how did that land, when that information became evident?
Joyce Doerksen – I think for me, when you have your child in your arms, you don’t know any different. So of course your life just keeps going. But at the same time there was this crushing disappointment that we wouldn’t have a normal family. That our children wouldn’t develop normally the way we had hoped they would. So it was definitely a big adjustment for us. Like I said at the beginning though, when they’re in your arms you still love them and just who they are. So, both emotions are still working together.
Rachel Cram – So much thinking must go on.
Brian Doerksen – There’s so much processing and shifting of expectations. You know, I’m the son of an educator and still now, my dad’s in his 80s and I’ll go have breakfast with him and we talk about, what book are you reading? You know, we talk about philosophy and theology and life. And, you know, we’re thinking. And, you know, I have dreams I’m gonna have a son and I want to be able to do that with my son when he grows up. And all of those expectations come crashing to a halt when you get a diagnosis like this. But exactly like Joyce has said, when you look them in the face or you hold them to comfort them or whatever, you just love them and you accept who they are. So you have incredible joy being with them and then you also have the weight. The weight of the future. That for the rest of their life they’re going to require full time support. There is nothing but very basic things that they can do on their own. So you have to manage all of those things. You have to factor in their unique situation into every decision you’re making.
Rachel Cram – Often for parents, that kind of stress and that kind of projection into the future, typically this is going to be like a 20 year max kind of commitment when your children are at home. That kind of stress can be very weighty and challenging on marriages. Have you… How have you negotiated those?
Joyce Doerksen – Well, I think early on we realized we don’t want to have our marriage swallowed up just with raising children. As important as that is, our marriage is equally or maybe even slightly more important. Because, without a healthy marriage children can suffer other issues. So
Rachel Cram – You mean, if a marriage is struggling, that puts a whole different weight on a child.
Joyce Doerksen – It does. And I think we had all those things playing in our minds. And so we started having a date night once a week. And we’d look for ways. We didn’t have a lot of money. We looked for ways of doing that. And I think that made a big difference. We’d have planning times. We would plan what our next steps would be for the next month, the next year. And that helped.
Brian Doerksen – We had lots of many dates. We would often have a young student living with us so that we could head off to our local Starbucks for 90 minutes and just sit.
Joyce Doerksen – And talk about and talk about the day.
Brian Doerksen – And just process together.
Rachel Cram – I think a tendency can be, when you have one or two children with a fairly significant need, that can start to define who you are as people. And it sounds like you’ve resisted that. Would you say?
Joyce Doerksen – Well I think too, when we realized that this was a lifelong thing. We actually, I kind of used the words, “I want to be in it for the long haul.”
Rachel Cram – Be in?
Joyce Doerksen – Be in life. Be engaged in, how do I do this for the long haul? Because, sometimes we can burn ourselves out. We put everything into it and neglect other things and then we burn out. And that means planning. It means realizing what our limits are, what our boundaries are, and how do we do this together. And so having kids could, like we said before, swallow us up. And we recognized that we’d have these kids for the rest of our lives. We’d be ultimately responsible for them. So we started a process of bringing other people in. So we had young college girls come and live with us. We gave them a room, a few hundred dollars. And they became like older sisters, especially to our girls. That we didn’t want them to be burnt out looking after kids that we had chosen to have
Rachel Cram – You didn’t want your daughters to be the ones,
Joyce Doerksen – to be always burdened with
Brian Doerksen – their brothers
Joyce Doerksen – their responsibilities. And in doing so it gave them an incredible love and tolerance for their brothers. It’s not like they were then released from any care. And actually, it worked that, even now, nobody is trying to run away. Like, they want to stay engaged. It’s like it created this extra layer of family life that took away some of the stress and anxiety within our family life.
Brian Doerksen – By acknowledging that we had limits and we needed help, versus saying, “No, we’re going to sort this out ourselves.”
Rachel Cram – I think that we can start life with a very clear picture of what “success” is going to look like. And then as life progresses we have to alter that view. Would you have a definition for what success looks like now? For you?
Brian Doerksen – Well, I think real success is totally rooted in relationships. You know, I mean the reality is, as somebody who you feel like it’s one of your key roles in life to earn enough income to support your family, you have to have some level of “success” in order to pay your bills. But, at the end of the day if your family is falling apart, then it almost doesn’t matter whether you’ve got that, whatever. That promotion. Or that extra great car in your garage. Or whatever it is, you know, for your life.
So, I mean Isaiah, who’s turning 20, he has almost no speech but he’s very focused on love. Very focused on giving and receiving love. Just yesterday, I was driving. He’s sitting behind me in the car and I feel this hand reaching from behind me and touching my cheek. And as soon as he touches my cheek, I’ll hear this ‘smooch’. He makes a sound of a kiss from the back seat. Then the hand gets retracted. These are the kinds of things that to me are the great gifts in life. So that to me is like success. Isaiah loves me. He sees me as an intricate part of his life. And if I was touring non-stop, that wouldn’t be the case. So I end up turning down opportunities in my career path to be a family guy you know. And in some ways, every family has its unique challenges. But when it comes down to it, it’s literally will we do this together? Will we be partners?
Will we accept our reality as the ground in which we are planted and find love and find life. Or will we seek it somewhere else.
Joyce Doerksen – I would speak complementary to that. When you’re raising special needs kids, you’re almost being driven to always try and do more and more for them. And sometimes we’re doing all these things without really thinking through what their actual needs are. And so it’s been smart with how you budget your time. We actually have a lot more control than we think we do. So it’s really thinking through what’s best for your child. How does this fit with your family? With your other kids? How does it help the person that you’re partnering with? How do you work together so that you can create a peaceful family unit? That you can do this for the long haul?
Brian Doerksen – Right. I mean the long haul, I would say for us, probably our definition of “success” has to do with quality of life and a sense that we are living in a way that we’re flourishing. But we’re also enjoying life. And our children are enjoying life. And that often means doing less. But doing what we do at a pace that we can sustain.
Joyce Doerksen – Yeah. We have limits. Live within it.
Rachel Cram – Do you see tangible ways that your understanding of joy, of enjoying life, has been affected by raising your sons?
Brian Doerksen – So many. So many ways. Because they focus you first of all on very small moments. Small victories. Really, when it comes down to it, especially with special needs kids, is it’s not going to be about amazing days. It may be about having some amazing moments that become memories for our children and for us. And knowing that a lot of the rest of the day will actually be hard work.
Joyce Doerksen – And so then you come away and we know that there was so much work with that camping trip or that Disneyland trip. But, you’ve collected all these little things. So many moments, strung together that bring joy to us, right. Memories.
Brian Doerksen – And the joy is in those moments and those are the things you remember. And you start filtering out the hours of hard work it took in order to get that moment of joy. And, because you did that, they also feel that their treasure chest of memories is full. Because, we didn’t say, “Oh, it’s gonna be too hard. We won’t try this.” Because, when you have a child and they react negatively to crowds, you’re constantly having to manage. Okay. How can we keep them not overstimulated, so that they can get to that moment and enjoy it. Right. The wheels are always turning.
Rachel Cram – Now, I don’t know if this will be true, but I’m just gonna go on a little thought process here. I’ve been thinking, one of the gifts people with Special Needs bring, is an immediate sense of belonging because people with special needs wear their vulnerabilities right in front of themselves. They’re not hidden. And I’m wondering, when you’ve spent time in the limelight or leadership like you have Brian, you could be a very intimidating person. People could feel like, ‘I can’t relate to this couple because they’ve got it all together.’ I wonder,
Joyce Doerksen – That’s interesting isn’t it.
Rachel Cram – I wonder if your children have given you this? Like do you wear that? Do they make you wear vulnerability in front of you as well?
Brian Doerksen – Absolutely. My dad calls our group of kids the Happy Gang. You know, they just love each other and it’s kind of noisy. It’s kind of messy around the edges.
Joyce Doerksen – I’ve always said as the kids were growing up and we’d go out, we are a bit of a gong show you know. Because you’d have Benjamin jumping up and down,
Brian Doerksen – and yes stemming with that kind of autistic behavior, you know, making sounds. And when people come over and they hear some of these sounds, sometimes they go, “Oh! What’s that!” You can tell they’re looking a little bit concerned. Oh, those are just Isaiah making happy sounds. You know. He’s all good.
Joyce Doerksen – Yeah, but those are the soundtrack of our life, and we love, we love his sounds. And of course there’s challenges we take him out. I always feel like I’m one of those crazy mothers with a sheen of sweat on my upper lip. You know, because you can’t predict what they’re all going to do. And I think it’s kind of interesting what you mentioned, in that maybe everybody feels like they’re slightly more normal than us and. They can feel good about themselves when they come. They hear Isaiah, or Ben.
Brian Doerksen – Or, and it’s also true that, because some people that know my work. They’re in that niche world. And they encounter me with my special needs son. “Oh, he’s just a normal guy who’s having some of the same challenges that my friend down the road, who has an autistic son. We’re all in this together.
Can I share just a little clip of a poem that is kind of connected.
Joyce Doerksen – Yeah.
Rachel Cram – Yeah please do. You got it there.
Brian Doerksen – Yeah. This poem by Naomi Shihab Nye, Kindness, a very well-known poem, speaks to me of this interplay between kindness and suffering. That you actually have to experience some pain and suffering to be open to some of the beautiful things in the world. It’s almost like, without the suffering, everything just kind of rushes by us.
Rachel Cram – I love this poem.
Brian Doerksen – So this is a portion of Kindness, by Naomi Shihad Nye,
Before you know what kindness really is you must lose things,
feel the future dissolve in a moment like salt in a weakened broth.
What you held in your hand, what you counted and carefully saved,
all this must go so you know how desolate the landscape can be between the regions of kindness.
And it carries on. If you haven’t heard the whole poem I encourage you to look it up.
Rachel Cram –Yeah, well we have such a hunger for kindness.
Brian Doerksen – Well I think in our culture we talk a lot about the word love and it strikes me that one of the things we are speaking about is this kindness, this attentiveness to each other even in our pain and our suffering.
Rachel Cram – That first line you read Brian, “before you know what kindnesses you must lose things,” for many of us that can feel counterintuitive. Have you discovered ‘lost’ as an influence in how you look at people.
Brian Doerksen – I see all of us as people deeply in need of giving and receiving love. And the vulnerability that comes right on the surface of my boys, teaches that to me, reminds me every day. But for me in our unique situation, it shifted me from an intellectual based view of life and of spirituality to,
Rachel Cram – Which might have said what?
Brian Doerksen – That if you believe the right things. If you say the right things. Then you will get the outcome that you want or hope for. In the Bible there is a book called The Psalms, which is poems and prayers and songs, forty percent of which is lament. And in the language,
Rachel Cram – Lament is a very important word. It’s not used a lot right now, so what do you mean by lament?
Brian Doerksen – Lament is to pour out your pain and to express the issues in your life that are unresolved. But to do so in a way that expects that there is somebody listening and that there can be hope for change.
Rachel Cram – Even though you can’t define what that is.
Brian Doerksen – Yeah. Even if you don’t even define what that is, I believe there’s something in all human beings that when we pour out our pain and our struggle, that there’s something cathartic in it. Yeah. So where were we? The shift,
Rachel Cram –In how you look at people
Brian Doerksen – In how you look at people. Everybody needs and everybody is worthy of love. Doesn’t matter whether they produce anything. Whether they accomplish anything. The very fact that they breathe means that they’re worthy of love. And sometimes religion tells us, if you believe the right things, if you pray the right way, then you’re worthy of love. And I’m telling you, with my boys, it really just blew apart any kind of box that I wanted to place around, ‘That’s an acceptable type of person and this is unacceptable.’ No, everybody is worthy of love.
Joyce Doerksen – I think having special needs children, the life that we’ve led, has really grounded and earthed us. I’m much more wanting to be in the present. I’m not really that interested in a lot of things that are said from pulpits and podiums. I’m more interested in how people treat each other and how we can eat together and live together in peace.
Rachel Cram – Humm, I love what you’re saying there Joyce and particularly that part about being in the present. I’m wondering, as we start to wrap up, Joyce and then Brian, would you be able to give a piece of wisdom each on living in the present, particularly in light of families as we walk into our own unexpected realities?
Joyce Doerksen – Probably it’s adopting an attitude of living your life in a way that you can sustain it. So that when you have unexpected news, you have time to process. You have time to react to it. Try and keep life as simple as possible, because, I think, if we’re living life to our full capacity all the time, we’re not setting ourselves up to be able to respond well to when things are difficult.
Brian Doerksen – I would say, keep on dating your partner. You know, life is complicated. Life will always throw complications your way. But if you and your partner are getting to know each other through all the phases of your relationship, then you can weather the challenges that come.
Rachel Cram – I think we’ll end with those two important pieces of wisdom. Joyce and Brian thank you for all the thought you’ve put into this conversation.
Brian Doerksen – Thanks Rachel. It was great to be here.
Joyce Doerksen – Yeah, we really enjoyed it.