I caught up with Breydin Bryant around the dinner hour this week. That was the first time she could come up for air long enough to hold a phone conversation. Breydin and Devon Bain are the parents of 2 and-a-half year old Mason Bain, who is challenged on so many levels, but as a friend remarks, “not in spirit. He’s one of the world’s great lights.”
From the moment Mason wakes up, Breydin is juggling a series of therapies and doctor’s appointments Monday through Friday. She has to drive several times a month from their home in Maine to see specialists at Boston Children’s Hospital, and insists the two and a half hour one way drive is worth it, “There’s such a huge difference, Mason benefits tremendously from each appointment.”
A little over three years ago, “My sister and I were pregnant around the same time, ” Breydin tells me, “and we thought of all the ways our kids would play together, we had so much fun thinking ahead.”
Little did she know their reality would be much different.
When Mason was born five weeks premature and wouldn’t gain weight, Breydin and Devon knew he would need a little more attention. Still, they brought him home with all the dreams of new parents and hoped for the best. When he was about four months old, Mason’s eyes started jumping. By the time they ran a series of tests, they got news they never expected to hear. The frontal lobes of Mason’s brain weren’t fully developed. He started experiencing seizures. Within a few months, doctors determined he has Spastic Quadriplegia Cerebral Palsy, with a host of other significant issues, including Epilepsy, Cortical Visual Impairment, and has had a g-tube since February 2013.
“The first year was the hardest, emotionally and financially, but we both decided we would always be there for Mason,” says Breydin. They agreed they would try anything to help their son, if it wasn’t harmful, and it’s been challenging trying to get all their doctors and specialists on the same page. “We’re young parents, and sometimes doctors would think we didn’t know what was best for Mason. Like the first ophthalmologist we saw who told us Mason was blind. We knew he wasn’t.” They followed up with another specialist who confirmed their instincts.
“Trust your instincts, is what I share with other parents,” continues Breydin, “we’ve learned we can’t be quiet.”
Some doctors told them Mason would never walk or talk or sit up.
His parents say they will continue to do all they can to give their son great experiences, like outfitting him so he can be in the snow and even on a surfboard. Just recently, Mason has started talking, “he says hi and dada, and he said mom once but I don’t think he meant it.”
One of the hardest things Breydin and Devon brace for are the complex seizures he has every few months. Mason’s last seizure, over the summer, lasted two hours and 47 minutes and put him in the hospital for six days. “It takes him a long time to recover and all the hard therapy work he’s done goes down the drain.”
So how do they stay connected with each other and in the moment with Mason? “Well, we don’t have much of a young relationship, (she’s 23 and Devon is 27) but I have a very supportive family who will watch him so we can have a date night every now and then. And when we look at Mason, he has to work so hard to do things other kids can do, we can’t give up.”
Their family is one piece of their support network. The special needs community in their area is the other. “Since I’m newest to the group, I can ask questions about doctors, about how their kids have started school, different treatments, all those things.” Now that they’re in this special needs parents world, Breydin says she realizes how they don’t take things for granted as much anymore, because they’re aware of how precious, and sometime short, life is.
“At first, I wondered why me? It’s too hard. But now, it’s our new norm, it’s our life.”
As Breydin watches Mason struggle with his therapy sessions, she realizes if he can get through it, she can battle her fatigue, so she naps with him if she’s exhausted. His milestones are amazing, like holding his head up for 20 seconds at a time. “To see the smile on his face, that keeps us going, and tells us we’re doing something right.”
For anyone who’s parenting, whether special needs or not, Breydin has several insights:
- Stick with it. It’s all about your child and you’re going to do what’s best for them.
- Fight for the best team to support your child, whether at home, school or with specialists.
- Don’t be afraid of doing things a different way.
Breydin and Devon want others to know that Mason may have been born differently, but they are working to assimilate him into life with others the best way they know how.
They’ve even created a website, Mason’s Mission, where they hold on to their motto, “You don’t know how strong you are until being strong is the only choice you have.”
Lois’ Living Through It blogs are posted on Mondays and Thursdays. Join her Monday mornings at 8:45am on Good Day Colorado.AlertMe