Sharon and Joel Estes live in campus housing at Princeton with their four kids. Sharon, who has a Ph.D. in English Literature, is currently on maternity leave from a faculty job at a community college while her husband Joel is completing his Ph.D. in Biblical Studies. He also works at the seminary in their web communications department.
I think it’s fair to say that the two of them have their hands full in a way few parents can truly appreciate.
In addition to two-year-old Graham and newborn twins Liddy and Clara, their five-year-old, Owen, has cerebral palsy as well as other medical needs that have resulted in many surgeries throughout his life and the inability to walk, talk or eat on his own.
“Having Owen has both shaken and affirmed our faith. On the one hand, Owen being diagnosed with medical issues while I was pregnant, almost losing him both at birth and again shortly after, and then learning to care for him felt like the worst things that could possibly happen. On the other hand, once the worst has happened and you have survived, you feel surprisingly calm about other looming crises.”
Sharon says that caring for Owen has taught her and Joel many things that they never imagined they’d have to do as parents, like changing a gastrostomy tube button, administering anti-seizure medication, coordinating a complex schedule of medical treatments and appointments, and designing and implementing communication strategies.
She spoke about the difficulty of attending many family-oriented activities because they aren’t wheelchair-accessible and worrying that not just Owen is missing out, but her other kids as well. “The sadness over this comes and goes.” But Sharon hopes that whatever Graham, Liddy and Clara may miss out on is far outweighed by their relationship with their big brother.
“I hope living in our family gives our children a deep store of empathy for others who are in need of care and kindness.”
Sharon says that while having twins has made it easier for people to approach her family (“EVERYBODY likes to talk to the parent of baby twins. They are so safe, so cute, so easy to connect with,”) she is incredibly thankful to Owen for ushering their family into a world of truly amazing people who they would not have met otherwise.
“We meet and form deep bonds with therapists, teachers, nurses, and other special-needs family members because this life is something you might never know about if you weren’t living it.”
In fact, one of the reasons Sharon and Joel wanted to participate in this series is because they feel it’s important to invite others into Owen’s life.
“Owen is one epic, amazing, determined, loving little kid, but he doesn’t have access to so many of the strategies, skills, or mechanisms that typical little kids would use to connect to others. For his sake, we want to help people find their way inside his world, to know him, and to love him. We also want this for their sakes, though. Knowing a kid like Owen, we believe, has the potential to shake the worldview of people who have only ever learned to value winning or self-sufficiency. In today’s world, I can think of few more vital things than helping people feel compassion and empathy towards those who seem different and those who have real need for care.”
Sharon and Joel loved the video and told me that they kept re-watching the part where Owen giggles.
“That’s the side of him that people outside of our family so rarely get to see, and I love that we can share it. He is so joyful and so transparently loves his books and his people.”
The video also reminded Sharon of all the things she loves about her husband.
“I’ve always known just how much Joel does on a daily basis, but I truly feel like he rises to heights few dads or partners ever achieve in his utter faithfulness in caregiving. He absolutely never fails to mix and blend Owen’s feeds every single day. He bathes him, puts lotion on his skin, and changes his diapers. In a lot of ways, I feel like the Owen and Joel story is a pretty epic one that this video absolutely captures.”
But she stressed that her part (though mostly unseen) is important too.
“When I watched the early morning shots with Owen and Joel, I wished that I had let them peek back in our room where I was feeding babies. The twins and me is another story that is pretty much always going on in our family, whether it’s in the background or the foreground.”
I asked Sharon if she had any advice for new parents who might be struggling with a recent diagnosis.
“I’d say that your life may look very different from what you expected, but there will be joy in it. On paper, Owen looks like he would have no quality of life. Liddy and Clara are starting to pass him by with their motor skills, but Owen has a rich, interesting life. He is joyful, loved, and has meaningful relationships with family and friends. I hope that when people see this video they think, ‘wow, that kid is awesome,’ because he so, so is.”
Please leave a comment in support of Sharon and her extraordinary family below.
This post is part of the “Extraordinary Families” series sponsored by Allstate. “Extraordinary Families” aims to show what life is like, sun up to sun down, for families facing (and overcoming!) unique and challenging circumstances. As the nation’s largest publicly held insurance company, Allstate is dedicated to protecting what matters most.