Lewisville woman works to honor her daughter’s memory

Lisa Bocan with her daughter, Mila who was born with a congenital heart defect and died in February.

Lisa Bocan smiled broadly Friday when the woman behind the counter recognized her and greeted her like a long lost friend.

“I haven’t seen you in so long,” the woman said. “How have you been?”

Because the woman remembered her and was kind enough to ask, Bocan answered right away.

As forthrightly as she could, Bocan explained that her Mila, her precious baby girl, was born with a congenital heart defect and died last month at Boston Children’s Hospital where she lived the entirety of her 4 ½ months on this earth.

It wasn’t the expected reply; nobody anticipates hearing something like that.

“The last time I saw her, I was pregnant so in this case I felt led to tell her about Mila as a way of explaining where we had been for so long,” Bocan said. “But I will admit, I love talking about Mila. It’s part of my grief process.”

As a family

People grieve in different ways. For some, it’s intensely personal and very private. For others, mothers like Lisa Bocan, talking about her baby daughter is cathartic.

“I experience such joy and healing when I talk about Mila and say her name — it keeps her memory alive,” she said. “It’s my hope that she is never forgotten.”

She felt that nearly from the moment last April when doctors told Bocan and her husband Matt the results of a prenatal anatomy scan that carried devastating news.

Mila had something called hypoplastic left heart syndrome, a rare and complex disorder that basically means the left side of her heart never fully developed.

The young family, Lisa, husband Matt and older daughter Brenna had only just started putting down roots in Winston-Salem after eight moves in just a few years. Now they had to decide whether to move again, this time to Boston, for as long as it took for Mila to have a fighting chance.

“It was a very hard decision, but we said we were going to do it together as a family,” Bocan said.

Mila was born in September; by the time she was 3 months old, she’d had two open heart surgeries and would need more.

When it sank in that they might be in Boston for a year or more, they made another hard choice. Matt and Brenna would come back home to Winston-Salem. Matt had a small business to run, and Brenna needed normalcy, something more than huge chunks of time in a hospital.

As they worked through Mila’s illness and processed all of the ups and downs that came along with it, Bocan hit upon the idea of keeping an online journal — it can be found at milasheart.wordpress.com — both to keep family and friends informed and as a way for Bocan to process what she was experiencing.

To be sure, the result will break your heart. But it is beautifully written, and because the Bocans weren’t afraid to show how their faith helped them in the darkest of times, it contains a message of hope and conveys a family’s profound love for one another.

“Initially, there was a point where we wondered if we wanted to have that much detail out there,” Bocan said. “But it was a fleeting moment because we wanted to share the details of the journey, the good parts and the hard parts. We wanted those included because they have proven to help other people who are going through the same thing.”

A great blessing

The most haunting and captivating part of Bocan’s blog details the last day of Mila’s life.

“Families with critically ill children learn to plan for today, not tomorrow, not next week and most certainly not beyond that,” Bocan wrote in her blog. “We learn to focus on this day, this hour, this very minute. Mila was doing so well.”

The morning of Feb. 1, she wrote, was bright and felt hopeful. Bocan went into Mila’s room at Boston Children’s Hospital and did what she always did: She brushed Mila’s hair, read to her, sang to her, all the things a new mom would do with her newborn.

She took photos, too, and captured a shot of Mila with her eyes open. “What I didn’t know was that I was capturing Mila’s dark brown, sparkly eyes open for the very last time. … I didn’t realize it at that moment what a gift God gave me. I captured many photos that day but only a single frame taken at 10:48 a.m. was with Mila’s eyes open and full of life, ” she wrote.

Mila had bleeding on her brain; her doctors explained gently that surgery could only help but so much. It was the moment Bocan had feared since she learned about Mila’s heart.

Matt and Brenna, back here in Winston-Salem, quickly made arrangements to fly north. Mother and daughter waited, covered in a prayer quilt sent by the good people at their home church, Calvary Baptist.

They made it to the hospital the next day in time to say their goodbyes while tenderly holding their daughter.

“Matt and I mourned,” Bocan wrote. “Our hearts were united in the pain only a parent who has lost a child can know. We were bonded in that moment, and we will never be the same. Mila’s life was and is one of our greatest blessings. She taught us how to love.”

Finding an outlet

The last few weeks have been something of a blur. The Bocans continued to mourn, of course, and care for Brenna, explaining as best they can to a soon-to-be-4-year-old what happened to her baby sister.

Bocan also set to work putting into words what they had just experienced. She found the social media outlet where she posted her blog to be a helpful avenue with her grief — and a way to let others around her know what had happened without having to tell the story repeatedly.

“It (the blog) was very helpful keeping people up to date,” Bocan said Friday. “With social media, there were many instances when we’d send a prayer request and thousands of people would respond. We leaned on our faith so much; there were times when (good) things would happen with Mila that had no medical explanation.”

She also found within that medium another unexpected benefit.

In sharing the story of Mila’s heart, they found they could help other parents about to walk a similar path. One in 100 babies are born with some form of congenital heart disease, and some of those parents have reached out to Bocan for advice.

They’re also in the process of trying to give back to the people at Boston Children’s Hospital who treated their family so well.

A Go Fund Me account has been set up to buy a second apartment where families can stay while their children are being treated, and the Bocans have teamed up with the Ethan M. Lindberg Foundation toward a similar end — helping families be families as they face congenital heart disease.

“Our prayer is that Mila Rose will never be forgotten,” Bocan wrote. “Her life, although seemingly short, made a significant impact on this world and for God’s Kingdom. …

“Some may say we fought and lost our battle with CHD. I would never say that. CHD did make us fight. We fought harder that we ever have before: for our daughter, for our family, for our marriage and for our faith. But we won.”

 

Source : http://www.journalnow.com/news/columnists/scott_sexton/sexton-lewisville-woman-works-to-honor-her-daughter-s-memory/article_b8b453cf-4e1d-512f-9569-e0f273debf31.html