Everyone who knows Mindy Sauer – through Blue 4 Ben, or Ben’s Facebook page or from her heartbreaking blog posts on “Pray for Ben Sauer” – will be thinking of her this Mother’s Day.
And like moms everywhere, Mindy Sauer will be thinking of her children: 2-year-old Megan, the baby girl she is expecting in the fall, and her twin preschoolers, Jack and Ben.
She can be forgiven if Ben, the brown-eyed little boy with the deep dimples, gets most of her attention. Earlier this year, he was diagnosed with a brain tumor – stage 4 glioblastoma, a rare and aggressive form of cancer that few survive.
His smiling face is now familiar to thousands through his mother’s blog. Once Ben’s condition became known, schools, churches, local media and celebrities rallied to support the Clarence Center boy in his fight. Still, no one would want to be famous this way. And, it is not going well.
At bensauer.blogspot.com, Mindy Sauer writes with candor that, while they enjoy small miracles like Ben and his brother celebrating their fifth birthday last week, the illness is closing in.
“The doctors tell us that Ben is ‘in transition,’ ” she posted Friday, adding that Ben’s speech is slurred and the growth of the tumor is now visible on the right side of his head.
Earlier in the week, there was a more general household update under the heading “What Life Looks Like These Days:”
“The tumor, the cancer, the medication, all of these things have changed a lot of things in our house ... Especially Ben. He used to be so compliant, easygoing, and nonconfrontational. Now he is anxious. Nervous. Irritable. And uncomfortable. ... All of this puts an extraordinary amount of strain on a young family.”
This follows a month of steady decline for Ben. Early in April, as his pain began to worsen, his mother described how much their routine had changed:
“... It’s become too uncomfortable for him to sit up, walk or stand. ... He needs to be carried. Gently. And helped with absolutely everything.”
This is the kind of care more commonly experienced by a family helping an elderly parent who is in decline. For mothers, the change is supposed to go the other way, as they watch their children grow, and these are not capabilities that are meant to be undone over a matter of weeks. Ben’s mom recalls that, not long ago, their self-sufficient 4-year-old was saying, “That’s okay, Mom. I can do it by myself” about all kinds of small tasks that he can’t do now.
As fate would have it
Mindy Sauer also acknowledges that she cannot do this by herself. Her belief in God is deep and profound, and she is eloquent in explaining her need to reach outward and upward for help.
In her writing her faith is expressed with sincerity, and her gratitude for God’s gifts rings true, but she is open about wishing that this bitter cup had not come their way:
“For the first few days after we learned Ben’s diagnosis, I could not talk to God. Unless you count screaming and yelling. Then yes, I talked to God all day long. It took me a few days to come back to reality.”
She was angry. She wept. And she kept asking “why?”
“It’s difficult to think about the possibility that this is what my son might have been created for – to bring people to Jesus, to reaffirm people in their faith, to bring hope to a desperate world – when he hasn’t even entered kindergarten.
“That is both humbling and hurtful.”
It is a far different message than one she posted in 2013, when she was the mother of two healthy, active boys and a 1-year-old girl. In a brief post, she writes that the twins are eating peaches when one proclaims, “I found da pit!”
“You don’t eat da pit. It make you sick,” the other says.
And so on, with their mother observing for her readers, “So grateful to provide my kids with a childhood where the most challenging part of their day includes avoiding the seeds in their fruit. Thank you, Lord!”
Even now, Mindy Sauer still feels blessed, months after the Sauers experienced the worst possible twist on the old Hebrew warning that while man plans, God laughs.
She told readers of fate’s twist like this:
“We found out that we were successful in conceiving our fourth baby on Jan. 10th. What a celebration! ... God had been so good to us. And we were so very grateful. The baby would be due in mid-September, just a few weeks after the boys started their first year of kindergarten. I’d be home with just Megan and would have a little extra time to commit to just my two youngest. We couldn’t have planned it any better!”
It turned out, they hadn’t planned at all for what would happen.
A couple of weeks after Mindy Sauer learned she was pregnant, Ben’s headaches started. His tumor was diagnosed Feb. 5, and by early March his parents were told that surgery to eradicate the tumor was not successful; instead it had tripled in size and was growing.
Around this time, family members and friends, and particularly the congregation at the couple’s church, The Chapel at CrossPoint, began a series of fundraisers to help offset Ben’s medical costs and support Roswell Park Cancer Institute. Schools and churches and other organizations joined in, and thousands began visiting Ben’s Facebook page and reading his mother’s blog.
The outpouring raised the family’s spirits as they brought Ben home to continue his fight. There would be no more surgery. His doctors said it wouldn’t help.
Facing the worst, Mindy Sauer dug deep:
“Lately, I’ve been thinking about the fact that adversity is oftentimes the thing that makes someone who they are,” she wrote March 19. “We need to walk through the fire at times in order to know how much more we could handle. Because that’s just a part of life.”
And the fire was flaring up. Up until then, Ben was handling his illness well, “no signs of deterioration. No loss of coordination, speech, or memory,” she wrote. And then:
“We were walking into Carrabba’s tonight for Ben’s latest pizza/pasta appetite when Ben stumbled. At first, I thought he had tripped over Jack’s feet. But holding his hand as we walked through the double doors, I realized that he was leading with his left foot and the right foot was kinda dragging for a few steps behind him. He asked to be picked up because his ‘legs felt funny.’ I carried him to a seat and just sat there with Andy and the kids. Stunned.”
Mindy Sauer wanted to leave, but the kids still were looking forward to pasta and pizza, so she got through it, she writes.
And more good things did come their way.
Dream come true
The Make-A-Wish group “threw him a huge bash where he got to enjoy high-impact, low-energy activities with go-carting, a magician, cotton candy and dinner for 50 of our closest family and friends. It was amazing.”
And JetBlue donated a trip to Florida for the family, giving Ben a chance to experience a much-dreamed-of chance to fly in an airplane.
“Ben’s doctor gave him clearance for the ride. But she suggested we go quickly, and return soon. So JetBlue worked fast – like within 48 hours – to secure a flight. ... It was a dream come true. Ben even got to sit in the cockpit. It was just awesome.”
It was just in time. In April, the steroids that help control Ben’s pain also made him so chubby his skin felt tight, and he was often hungry. The anxiety that is now constant began to take hold and he started insisting that his mom or dad be with him every waking moment.
God’s will be done
Mindy Sauer is about five months pregnant now, and works hard to make time for her other two children. On Friday, she went to the Mother’s Day Tea with Jack at the boys’ preschool, where the mothers’ talk turned to the prospect of kindergarten in the fall, and how emotional it would be to send their babies off to “real” school.
Meanwhile, Mindy Sauer and her family get through each day and pray for a different reality, or the strength to handle the one they are living in now:
“I do not mean to act as though Ben is already gone. I don’t want anyone to think that we have given up praying for God’s complete healing and mercy in his life,” she wrote Friday. “God is still in control and still very capable. But I am also human and very aware of the prognosis I see in front of me. And barring the possibility of a miracle, Ben won’t be with us for too much longer.”
As she has written before, it is not the destination that frightens her, it is the journey that can be hard. That may be why her voice has resonated so powerfully with so many other mothers, a voice that through all the pain and tears continues to end with confidence in the outcome:
“No matter how dark the road feels at times, we will make it to the other side. By God’s grace.”