The 17th annual Twin Cities VisionWalk is Saturday, Sept. 23, at Lake Harriet Bandshell in Minneapolis — a free, family-friendly event including a bounce house, face painting and balloon animals and culminating with a walk around the lake. Designed to raise money for vital research on vision loss, it is chaired by Sarah Bertram, 38, a member of Mary, Mother of the Church in Burnsville, along with her 7-year-old son, Matthew, who was born with a rare retinal disease called Leber’s congenital amaurosis.
The mother-son duo set an ambitious fundraising goal under the team name “Move for Matthew” for the Foundation Fighting Blindness.
Advocating for those with vision loss has been a family effort that flows from their faith, said Bertram, a government employee who, along with her husband, Joe, has two boys.
Q How did you first process the news that Matthew has Leber’s congenital amaurosis?
A I remember those days like it was yesterday. A lactation consultant told us that we should have someone look at him because she noticed that something was atypical with his eye movement. Once I told our doctor and she suggested we get him checked out, that began a wild goose chase of tests and electrodes.
Finally, when Matthew was 10 weeks, we met with a med student at the Lions Children’s Eye Clinic at the University of Minnesota who just laid it out: “Oh, your kid has LCA. Your son’s blind.”
We got genetic testing done, and it confirmed that he did have it. We were stunned.
We mourned it about a week. But then I told Joe, “You do not need to have good eyesight to go to heaven. You don’t need it to be a good person or to be happy.”
That snapped us out of it. And we pivoted: “OK, we can’t do anything about this. Let’s learn about it and refocus. This is the new normal. This is our journey.”
Q What helped you move forward?
A You get a diagnosis, and then you look at your little baby, and they’re so perfect, they’re so happy. You think: “There’s nothing wrong with you. I’m so blessed to have you.”
I did receive a gift from God because I was so fearful. I was thinking, “He’s never going to see my face, he’s never going to see a rainbow.” I heard loud and clear: “Don’t worry about tomorrow. Only focus on today.” I’m a planner. So, the fact that I received that phrase so clearly was powerful. It’s exactly what I needed.
Q Tell me about Matthew, who just started second grade.
A Joyful. That’s the word that encompasses him. Chatty, math-minded, musical. He’s always had great rhythm. He’s in piano and drum (lessons). He is a great helper. He is empathetic. He’s very clever — and also bossy. He is the man with the plan.
Q Has being the parent of a child with vision loss changed you?
A Yes. It’s made me more compassionate and more patient, especially with children. I really like the way that kids will ask questions to Matthew and of him. I realize that every stare is not a negative thing. It’s actually an opportunity. So, when kids ask, “What’s that stick?” we say, “This helps me see. My brother likes to hit kids with it; you better watch out.”
I feel more awareness toward differences. If I see somebody, I definitely want to get to know their story. My favorite phrase is, “How can I support you?” — whether that’s a girlfriend who got an autism diagnosis for her kid or if my kid notices someone in a wheelchair. Sometimes people shy away from things they aren’t familiar with and make assumptions. I tell my kids, “Why don’t you go ask, ‘What’s that like?’ Let’s talk to them!”
Q You don’t want people to feel sorry for Matthew, as if he’s a charity case.
A Matthew doesn’t believe anything is wrong with him, and neither do we. When people say, “I’m so sorry,” I tell them: “There’s nothing to be sorry for. This is the way he is.” I truly believe that we all have something that is our struggle. It might not be as obvious as a white cane and braille, it might not show up on an ultrasound, but we all have something that we have to work through. We figured it out at 10 weeks. It was a gift — we got to prepare.
When I was pregnant with our second son, I told God, “I’ll take another blind child. I’m so happy you gave him to me. I feel like I was called for this.” And then I got a sighted child — and he’s way more work! He’s a wild 3-year-old.
Q How cool that you recognize this is your calling.
A We all have that in us; we just don’t know we have it until we have to use it. I was at confession last weekend and the priest reminded me that parenthood is a vocation. I really needed that. It can be so overwhelming.
Parenthood is a vocation. This is just more pronounced because I have to work a little harder to help my son meet needs: for health care, for education, for haircuts, when we get in and out of the car — everything’s a little extra, and I’m just trying to make it all happen.
Q How has your faith informed your response to this?
A When I felt like I was flailing with the diagnosis and didn’t know where to turn, my faith was instrumental. I don’t know how you would get through something like that without that foundation. I was raised pro-life, and I really made the intentional decision to be firmly pro-life when I had Matthew. He would be, perhaps, not alive. There are so many examples of where he might have been left to die in other countries. You hear about babies that are abandoned if they’re born with a disfigurement or cleft palate. But everybody has a purpose and can contribute.
Q You’re pro-life to the core!
A Every day, more and more. I’m not silent anymore. I love seeing all these secular pro-life groups that are popping up. This isn’t just a religious issue. It’s a human rights issue. And I love seeing this uprising.
Q Is your faith deeper now?
A Oh yeah. And that comes with age, too. I’m seeing everything as a gift versus, “Why would this ever happen?” I was chosen for this. I was given him, he was given to me.
Q You’re a busy person — was it hard to commit to this big volunteer role of chairing the VisionWalk?
A We’ve got a lot going on, but this is a big part of our lives. The kids love it, and it’s a great way to connect with this community. The Foundation for Fighting Blindness is wonderful, and they’re very forthcoming with their fiscal responsibility.
Q There is hope that Matthew’s vision could be restored, at least partly. How do you live with that hope and also be realistic about his limitations.
A It’s tricky. Joe is the one who always says “when Matthew can see” — not “if.” And he’s not the optimist like I am. He is the realist, so for him to say that is pretty major.
We want research to advance so we could have that option — help his vision come back or see colors. We’re not expecting him to be able to drive a car, and we’ve been very honest with him.
Q You exude peace! You must be proactive about wellness. Do you have limits on social media?
A My husband and I decided to get off Facebook when Matthew was born. I felt like it added drama to my life. When I quit, I was still checking my phone at stoplights, which was a bad habit. After day three, I have never once wondered about it. I felt a freedom. It gave me a lot of peace and saved me a lot of mental energy.
I use Instagram just to follow friends or groups I’m passionate about. I’m selective about what will enhance my life and what will make it more crowded or noisy.
Q When do you feel close to God?
A When I see my kids. And any time I take a minute to re-center. Mornings, especially. I try to be intentional about that, to start the day in gratitude.
Editor’s note: To donate to Matthew’s team or learn more about VisionWalk, visit: give.fightingblindness.org/moveformatthew.
