February 10, 2015
by Mark Dunning
Family has always been the way through this. Family is the treatment. Family is the cure. That’s how we survive Usher syndrome. We rely on family for support, for assistance, for a shoulder to cry on when things get hard. Family treats Usher syndrome as normal, common, a way of life. With family, Usher syndrome is just what we do, like brushing our teeth and going to work. Family just gets it.
One of the beautiful things that has come from my daughter having Usher syndrome is that my family has grown exponentially. People in other parts of the world, some of whom I’ve never met in person, who don’t even share a common language (¡Hola, Oscar!), understand me better than my closest friends. We even share a genetic connection, just like my biological family.
The thing about family is that you feel a deeper responsibility to them. You share things with them, embarrassing things, painful things, things you wouldn’t want to tell your friends. They accept you when you fail, when you don’t turn out the way you wanted, when you let them down.
I feel a responsibility to this Usher syndrome family, a responsibility to promote hope. I truly believe this is all going to turn out alright, for all of us. I believe we will get funding, find treatments, build a strong community. I believe we already have. And I believe, regardless of the impact of the disease, kids with Usher, adults with Usher, families with Usher, will live happier, more productive lives now that we have each other.
That doesn’t mean everything will be perfect and it doesn’t mean that there won’t be some expectations that won’t be met, some hurdles that won’t be overcome. It just means that, despite setbacks and failures, the sum total will be positive in the end. I believe that. Even when it’s hard to see it, I still believe it. I’ll always believe it.
Julia and I are separated. I feel like a fraud writing the words, a fraud on countless levels. I preach hope, but in our case, for our marriage, there may not be any. Like all such situations it was no single thing that led us to this place, this irreparable, irreconcilable place. I just know there is a pain in this that stretches beyond Julia and I and infects the whole family. I feel like I’m hurting a lot of people and I feel like I am doing so for selfish reasons. I have a son who is terrified of divorce. I have a daughter with Usher syndrome who needs us. And yet here we are, on the precipice, ready to jump. I feel I should be better than this. I’m not.
Usher syndrome did not directly lead to the demise of our marriage, but it played a big part. It swamped us early on and it just seems like we’ve never been able to get our heads above water long enough to find each other. When Bella was diagnosed with hearing loss as an infant, I withdrew from the family. I couldn’t imagine a hopeful future for her. I abandoned Julia, temporarily, and turned inside myself. I recognize it now as depression but the name doesn’t really matter. Julia had to carry on with a heavy burden by herself.
She was amazing. She gave me hope, lit a path to a future that was happy, that was safe. She is the reason Bella got the services she needed. She’s the reason Bella got to all the doctor appointments, got all the therapy, got immersed in language. When she sets her mind to something, Julia is tenacious. She never quits. Julia saved Bella and she saved me. She inspired me. The Decibels Foundation was Julia’s idea. I just went along for the ride. Countless families with hearing loss are indebted to her, yet she remains as humble and embarrassed by praise as ever. Julia as much as Bella is the reason I believe.
But my weakness during those critical months after Bella was diagnosed with hearing loss left scars. A trust was broken that was never fully mended. I had told Julia I would always be there for her but when she faced one of the biggest crises of her life, I folded and she was alone. She’s forgiven me. Neither of us has forgotten. I have spent the rest of my life trying to atone for that failure.
When Bella reached third grade, things were finally reaching an equilibrium for us. Bella was in a mainstream school, her grades were good, the supports were great. Julia and I dared to dream of a future where Bella was just another kid, where we could be a normal couple, where we could finally work to repair the fractures in on our relationship. But like everything else in our marriage, it didn’t turn out the way we planned.
When Bella was diagnosed with Usher syndrome it was Julia who withdrew. She closed up tight, pulled back from Bella, from Jack, from me. It was my job to give her hope, to light a path to the future. But there wasn’t any. Deaf, blind, no cure. That was the future. That’s what we were all told. That’s why Julia crawled in to bed and pulled the covers over her head. Her love of Bella defies description. She couldn’t watch her daughter suffer.
The Usher Syndrome Coalition exists as much for Julia as it does for Bella. It grew from my desperate attempts to find a hope, a morsel of hope, anywhere among the piles and piles of dirt. I’m a fan of the show Gold Rush. In it they move hundreds of yard of dirt to find a few flakes of gold. That’s Usher syndrome. Sifting through the dirt for those few flakes of gold.
I found gold, of course. I found it with Marly Kenna and Heidi Rehm and Bill Kimberling. I found it with Todd and Lane McKittrick. I found it when Steve Rose flew up to meet with me (me?!) to talk about Usher syndrome and when Jennifer Phillips returned my e-mails and offered to contribute to this blog. I found we weren’t alone, that there were thousands of families out there searching, digging, just like us. There was hope, it just came in tiny doses, little flakes buried in yards and yards of black soil.
Julia was emotionally distant from the family for a long time. About eighteen months ago she began to realize that we’d filled a few dozen jars with those flakes of gold. She also realized that she’d missed out on those small moments, those hundreds of little victories that, flake by flake, were turning in to a fortune. Instead of lifting her up, it drove her further down. I understand how she feels. I’ll never forgive myself for missing out on her early victories with Bella. Now Julia has her own regrets.
For the last year we hoped that we could build on that shared emotional experience, that we could reconnect through our failures. But it didn’t work out that way. We went through counselling and tried hard, too hard, too uncomfortably, to recapture what was lost. It just rubbed the scabs off, made the wounds raw. Now it seems the only way we’ll really heal is if we leave them alone.
Julia says she’s broken, that something inside her has been shorn beyond repair. The parts of us that fit so well together have been twisted, knotted, cut short. They don’t connect like they once did. It is unlikely that time will put them back in to place. For us as husband and wife, it seems, there is no hope.
But, as always, there are flakes of gold to be found. Julia and I remain close friends. I have moved a mile from the house so I see the kids just about every night. In many ways only the sleeping arrangements have changed. The kids are not happy, but they are adjusting. And as always with this Usher syndrome family, an unexpected and humbling number of people have stepped up to help them, to care for them, to ensure they never lack for a shoulder to hold on to or to cry on.
As for Julia, well there is gold there, too. Usher syndrome no longer has her pressed to the ground by her throat. It seems she is finally ready to take on the disease. That tenacious glint is returning to her eye. Last month the Usher Syndrome Coalition hired a new employee. We were looking for someone with non-profit experience at a place like, say, the Decibels Foundation, someone who had a history of building something, of helping families. A deep understanding of Usher syndrome and a knowledge of sign language was a plus. It’s a part-time gig with flexible hours, perfect for a mom with two kids. Perfect for Julia.
When you sign up for the family conference in New Orleans this summer, you can thank Julia. She put the registration together. Working to help families with Usher syndrome is now part of her job and once again part of her life. The four of us, Julia, Bella, Jack, and me, will be at the conference. We expect to be together at every conference going forward. We may not be there as husband and wife but we will be there as family just the same.
That’s how we survive Usher syndrome. One big family. That’s us.