I’m Blair Begbie, part of the Good Grief group organized by CSPC’s Sarah Stewart. The group is for moms who have lost a child or have a child with a terminal illness. Here’s my story.

“We knew something was a little off with Rowan when she was around a year and a half old. Speech delays, hyperactivity. We have two older kids, so we just had this gut feeling. At first, we thought maybe it was a hearing issue. So we took her to an ENT, and they recommended tubes. We had them placed in March, hoping they’d help. Then, in April, I got a phone call. It was from a friend of a friend- someone in Knoxville who had two kids with MPS 1 (we just generally call it MPS for short). She had seen pictures of Rowan and noticed the physical characteristics: thick, coarse eyebrows, a protruding belly. She reached out to some mutual friends first, trying to gather more information before dropping a bomb on us. When a friend finally connected us, I listened as this mother explained what MPS was. I had never heard of it before. But as she listed the symptoms -chronic sinus congestion, speech delays, hyperactivity, umbilical hernia- it was like a checklist of everything we’d been struggling with. I hung up the phone and just knew. She said, ‘I hope I am wrong and you look back on this conversation and think I am just a crazy person.’ But I knew she wasn’t wrong. Miraculously, we got in to see a geneticist at UT two weeks later, an unheard-of turnaround time. They ordered genetic testing, and on April 26, we got the confirmation: Rowan had MPS III. People also call it Childhood Alzheimer’s. A rare, progressive disorder with no cure. It slowly steals away the ability to talk, walk, and eat. Most children who have it don’t live past their teens. I thought of my older kids, Marley and Finn, who are 7 and 4- how this would change their childhoods. How this would change everything. I thought of Rowan. Of all the dreams I had for her, for her future. And in that moment, I realized I had to grieve the future I had imagined. Because it was never going to look the way I thought it would.

Rowan is 3 years old now, and the past year has been a whirlwind. Within months of her diagnosis, we got her into a clinical trial at UNC Chapel Hill. Every week, either my husband Bryan or I drive 12 hours round trip so she can get enzyme infusions, medication we pray is buying us time. At first, it felt like our whole world was unraveling. The constant doctor’s appointments, the long drives, the disruption to normal family life. But then something shifted. We realized we didn’t want to just survive this. We wanted to live. To thrive. So we started making memories. We took the kids on camping trips. We went on vacations. We even took them to Disney over fall break, just the five of us. That trip nearly did us in, but we wouldn’t trade it for anything. Rowan is full of life and doing well right now. She’s fearless- loves the water and would leap off a moving boat if we let her! She runs into preschool every morning, so excited to see her friends. She’s still adding words, which is incredible, considering everything stacked against her. (She has complete hearing loss in her left ear and only has 30% in her right; a cochlear implant may be an option down the road.) She’s not regressing yet- as soon as we got the diagnosis, we decided to get her into as many therapies as we can. That way, when she starts losing abilities, she’ll have more to lose. Maybe this enzyme that we’re getting each week in the clinical trial will make a difference and maybe it won’t. I don’t know. But I’m just trying to be hopeful. We don’t know how much time we have, so we’re determined to fill as much of it as possible doing what we can as a family. Even if it leaves us exhausted, Bryan and I feel like, ‘You know what? Life’s too short. So why not?’

Even with Rowan’s diagnosis, I’m not resentful toward God or mad at God. Horrible things happen all the time- this is just the life for us. And I hope that some good will come to kind of help us understand the ‘why.’ We’re trying to make a difference not just for Rowan’s life, but for other kids. So we’ve started the Rowan Tree Foundation of East Tennessee to raise money for research and help other MPS families. The Rowan tree is viewed by some cultures as a tree of life, and our Rowan is so full of life, so that’s the reason for the name. Once we got Rowan’s diagnosis, somebody we knew was like, ‘You need to reach out to Sarah Stewart.’ I had never heard Sarah’s story, but I called her that day and we talked. Then she came over a couple days later and brought food, and we’ve since built a close connection. We talk all the time. As much as I wish Rowan or Sarah’s daughter Mary Mitchell had never gotten MPS, I wouldn’t know Sarah without this. I’m so thankful for Sarah and Mitch- they’re the most amazing humans. Still, when Sarah started the Good Grief group, I almost resisted. It’s not always easy to put yourself out there and share your story. But sometimes you just have to do things that are hard, hoping they’ll make a difference in other people’s lives. So I went to the first meeting a few weeks ago. Sitting in that room with other grieving and hurting mothers, I felt guilty still having Rowan when so many others had already said goodbye. But I also felt connection, strength, and reassurance. Sarah also invited Bryan and me to a service at CSPC. (I grew up immersed in church life all through high school. But since college, I’ve been part of the statistics of people just not going anymore.) We went and liked it -I loved church growing up- so maybe this is a chance for us to get back and get our kids involved. I don’t pray much these days, but I know God’s there. I feel so lucky He’s given me Sarah to walk with, even though it must be hard for her walking through these things again. And I’m glad she felt called to start Good Grief. What a great outlet for all of us to get together and just be friends. Helps you feel not so alone.”