We’re Ryan and Jessica Hubbard, and this is how we’re living deeply.
Ryan: “The first thing we noticed was a lot of Deacon’s gross motor skill development was behind. As a young baby, he really wasn’t crawling, he had a hard time holding his head up for any length of time. When we went to his 15-month checkup, he still wasn’t walking very well. That was when the doctor sent us over to physical therapy to see if that could help. So Deacon would go to physical therapy twice a week, and we were seeing a little bit of progress. But the therapist thought we should be seeing more, so doctors recommended a series of blood tests. The day we found out the likely problem –a Friday in March of 2021, when Deacon was 2- is burned into my mind. The details are still hauntingly clear. It was 30 minutes before a final exam for one of my online MBA classes. The doctor calls, Jessica answers the phone: ‘Ryan, the doctor just called and wants us to come into the office to talk about Deacon’s lab work. But she said not to bring any children.’ So we’re thinking the worst- how often do you go to your pediatrician without your children? That definitely set off alarms for us.”
Jessica: “We knew it wasn’t going to be good news, but we didn’t know exactly what were looking at. But as soon as she told us it appeared to be Duchenne muscular dystrophy, it felt like everything just went dark. That was the lowest point we’ve experienced. Duchenne is a muscle-wasting disease, and it’s fatal. There’s no cure. The boys typically live into their 20s. Your heart is a muscle, so it atrophies, it breaks down. At first, we really took it on our own shoulders to try to figure out the future. And it was really heavy, a very hard time.”
Ryan: “All weekend, if we weren’t researching on the computer, I was just pacing around the house, asking, ‘What do I do next?’ I’m a problem solver, fix-it kind of person. But you can’t solve and fix this. I was in that mode, though. At the same time, we needed to sit, process, and cry. And we did. Our emotions ran so deep those first 72 hours after we found out.”
Jessica: “Typically, we don’t pray out loud together. But this was different. When the weight of the world felt like it was on our shoulders, we were praying together out loud, crying together. But we were also trying to snap out of it. With two kids (our first child, Emily, is several years older than Deacon), we knew we needed to be as positive as we could. The problem was- we’d been trying to do it all on our own. Finally one day, a couple weeks after Deacon’s diagnosis, Ryan and I sat down –both crying- and started praying. Suddenly this peace came over us about the whole situation. We looked at each other and said, ‘We’re going about it the wrong way. This was God’s plan from the beginning. It’s not like He made a mistake.’ From then on, we honestly started looking at it differently.”
Ryan: “This moment was when we kind of realized, ‘Let’s just let God guide us instead of us guiding ourselves.’ And His peace came to us. I had gotten so consumed in that headspace of trying to figure everything out that when I stopped, it was a release of stress. And yes, there’s still going to be stress, but we needed to approach it differently. There was no way we were going to be able to handle this on our own- it was going to be a long and difficult journey. We understood we needed Him to walk alongside us to help us with that. During this moment I looked back and was reminded that every time in my life when I had a challenge, let go of control, and said, ‘God, just show me how I should go,’ He more than met my needs. Every time I’ve decided to let go of control, God has shown me what He really wants me to do, and He’s done more than I’ve even asked Him to do. So over these past several years, our approach has been ‘Just let us know,’ and when we pray, He answers our prayers. We’ve continued to look through that lens as we’ve encountered challenges.”
Jessica: “A huge way He’s met us is in giving us the ability to have a positive outlook and to appreciate every blessing He has for us on this journey. The biggest of those blessings is Deacon- he’s as sweet as can be, he’s hilarious, and we’re so glad to have him completing our family.”
Jessica: “These days when we’re struggling, we try to remind each other God has a plan. We don’t know what the plan is, and it’s not our plan. Our plan would be that this wasn’t the situation, that we could fix it and cure Deacon. But while we may not know every why and what of God’s plan, we’re trusting Him in it and seeing the joy of parenting Deacon. He’s a sweet, precious boy who doesn’t meet a stranger, and he’s the mayor of Cedar Springs Weekday School. It’s such a joy. To know Deacon is to love him. He’s aware of his disability because it impacts him in all kinds of ways. He can’t run like his friends run- can’t keep up, not as fast. He can’t really climb stairs easily and has to use the elevator at school.”
Ryan: “Another impact is something as routine as picking up a fork. To him, it feels like it’s five pounds. And when we buy him shoes, we always try to buy the lightest-weight shoes possible, because even just wearing a normal pair of tennis shoes has a big impact on how quickly the muscles in his legs will be strained.”
Jessica: “For right now, Deacon is still able to walk. He’s only 5, and wheelchairs typically come into the picture around age 9 or 10. There are so many new therapies coming out, we’re hopeful that maybe that won’t be his prognosis.”
Ryan: “The smallest things that you never think about are almost constantly on our mind. For now, our goal is to prevent muscle breakdown as much as possible.”
Jessica: “In addition to giving us inner peace, the ability to face the journey, and deeper joy in both our children, God has provided another blessing in all this: my new job running community education for the Muscular Dystrophy Association (MDA). I’m working with newly diagnosed families and helping them navigate a whole new world. Doing something to help other families on the same journey has really helped me live deeply in the sense of getting outside of our little bubble and being reminded we’re not alone. Others are in the same boat. It’s not a fun ride, it’s a scary one, especially at the beginning. And being there to help others by providing programs and resources also helps me.”
Ryan: “We’re finding other outlets to help and serve, too. Sometimes it’s offering advice in online groups. And a couple years ago, we were even part of a Parent Project Muscular Dystrophy fundraising run at Disney World. We went down to Orlando and ran the 5K.”.
Jessica: “Our whole family- at 3 a.m.! It was great for us, and great for the other families we were around.”
Ryan: “Thinking about the future- it’s a struggle. We’re planning ahead, but at the same time, trying to not let that take away from the present.”
Jessica: “We’re praying the future could be completely different than we expect. (In fact, right now, we have a window of just a few months to get Deacon cleared for a promising new gene therapy treatment- we’d appreciate your prayers on that!) But in preparing, we sold our last home, where all the bedrooms were upstairs. Again, that was a moment of God providing: it sold at double what we paid for it! So we were able to buy land and build a new ADA-compliant home. Everything’s flat and wheelchair accessible.”
Ryan: “We’ve seen how God’s done so much good in our lives, and we feel like He’ll continue to do that moving forward.”
Jessica: “I feel like I’ve grown so much closer in my walk with God- maybe because I’m in his ear constantly. If I wasn’t, I couldn’t function, couldn’t go on, couldn’t do what we’re doing. There’s no way. Just constantly talking to God -thanking Him for all kinds of things and also obviously asking for things as well- has grown my relationship with Him. He’s helping both of us see more of what’s good and positive all around us. We’re just seeing more of God everywhere, I guess.”
Ryan: “It might be easy to go in the opposite direction: Why me? Why my family? But that actually has never crossed my mind. (Even if I knew the answer, what is that going to do for me?) Every single time I’ve entrusted Him with control instead of myself, He’s never let me down, and I know He never will. So we’re just looking to Him to help all four of us move through the journey. And with that, Jessica and I are experiencing more peace and gratitude for what we’re blessed with versus what we’re not blessed with.”