Matthew and Alison Kelly, who are members of Fellowship’s West Little Rock Campus, have a daughter, Esther (13), and two boys, Ethan (10) and Evan (8). Matthew plays guitar on the Worship Team, and Alison serves on the Care Team and co-leads a table at Women’s Bible Study.
Their sons, Ethan and Evan, both have Down Syndrome.
Their rhythm of life, therefore, is marked by constant change. “Rhythm to me,” Matthew explains, “is something regular that you can measure in time signatures (4/4 or 6/8, for instance, in music) or beats per minute (I tap in the BPM into my pedal board for guitar for church all the time; down to the 10th of a second in some cases). So for us, the rhythm is variable, which makes it not really a rhythm, more like a ‘take it as it comes.’ We have normal things that we expect to do each week, but we know they can be interrupted at any time and change.”
Echoing Matthew’s sentiment, Alison says that “rhythm is a funny word for families with extra things going on, but especially with serious health concerns and special needs. I think we get small stretches of time that may have a rhythm, but generally we just have had to learn to be flexible and expect things to go differently on a constant basis.”
In the melodious words of Fraulein Maria, “Let’s start at the very beginning, a very good place to start.”
Alison grew up in Texas, in a small town called Borger, with her parents and three younger brothers. She credits her parents, grandparents, and Sunday school teachers for having a strong impact on her and giving her a Christian foundation. Alison says she came to a saving faith in Jesus at a young age. Before she was even 10 years old, she was thinking about big-picture questions and Christianity versus other religions, and says “I started to realize God is real. Jesus is the only way. And I wanted to be, you know, definitely in God’s family.” She also says a big, transformative moment for her was realizing that her sin was just as serious as the more “obvious” sins. One of her main struggles has been pride, and she notes how much sneakier it is than other sins. “It was like God just revealed that to me right then,” Alison recalls. There aren’t those who need “less Jesus” than others.
An outdoorsy woman raised by an outdoorsy family — they hiked every summer at Red River, New Mexico — Alison fondly recalls a tradition growing up where her family would camp for Easter at Palo Duro Canyon, in Texas. There was an outdoor theater where they stayed, and there they would attend a sunrise service.
“You get up and it’s dark and it’s freezing cold down in the canyon, and we would take our sleeping bags down there and go have church service, sunrise service on Easter morning. And sometimes it was just our family, and sometimes it was a group of families from church and friends.”
Matthew, raised in both Kentucky and Arkansas alongside his two sisters, also had a Christian upbringing. His father was a pastor, and he was in church every Sunday and Wednesday. Like Alison, Matthew had a pivotal moment that helped shape his faith walk — at his 14th birthday party, of all places. “What I thought would be a fun night of watching movies, playing video games, and eating junk food became an ‘intervention.’ They called me out and told me it was time to decide what I was going to do about the faith I had been raised in; either make it my own, or stop pretending. I’m reminded ‘neither hot nor cold…’ They embodied that verse in Revelation Chapter 3 very well.”
His friends’ strong words of loving conviction rang in his ears after that night. “A few months later, I was at a youth event with my church. During the middle of worship, I decided to sing. From the time I was 10 or 11 years old, I stopped singing in church. I think subconsciously I couldn’t sing the words that I wasn’t living/didn’t know if I believed in… When I started singing, I knew something was changing. I knelt down on the carpet floor in that auditorium (stage right, near the front; I can still see the spot in my head) and began a lifelong process of surrender.”
Speaking of worship, music has also been a central feature of Matthew’s life since he was a young child. He caught the bug early. “Some kids sneak books into their room and read long after they are supposed to go to bed, other kids sneak their favorite toys into bed. I would sneak and turn on the radio or tape player and put the volume as low as I could so that I could still hear it but hope my parents couldn’t if they walked past my bedroom,” Matthew recalls. “At 14 years old, I found an old guitar that my dad had sitting in the corner and started learning. I’ve never put it down since, so to speak. It allowed me to make music of my own instead of only being able to listen to what others created. I also like to do woodworking, which merged with my love of music. I’ve made about seven guitars myself; some of them I use at church, and some I’ve built for customers.”
In addition to their faith, Matthew and Alison share a hobby: rock climbing. In fact, that’s how they met! She asked Matthew to belay her for a climb she was about to do. The rest, as they say…
A few months after Matthew and Alison got married, Alison got pregnant with Esther. She was born in July of 2011. “That little child was just an angel,” Alison remembers fondly. “She was an absolute angel. Sweet baby girl.”
As happens with every couple stepping into first-time parenthood, Alison and Matthew both quickly realized the ways in which they needed to grow. “We transitioned from just deciding on what we wanted to do to deciding how we needed to prepare our house and ourselves for our new baby,” Matthew says. “I began to learn how selfish I was (and probably still am) during this time. God has a way of altering my life around the lessons I need to learn. I think of the old DC Talk song… ‘Some people gotta learn the hard way, I guess I’m the kinda guy who has to find out for myself.’”
For Alison, her personal work had to do with, well, work! “I was a little bit of a workaholic… I realized, I was like, ‘I can’t be a workaholic and a good mother,’ and I wanted to be a good mother. So, I quit my job.”
Life continued on as normal for the new parents, until Alison became pregnant again, and tragically suffered a miscarriage. “It was terrible,” Alison says. A few months later, by God’s grace, Alison was pregnant again, this time with Ethan!
As it turns out, Ethan was a Christmas miracle — he was born on Christmas Day! Alison had been telling herself and others, “I’m not going to have a Christmas baby.” But, of course, that’s exactly what ended up happening!
When Ethan was handed to Alison, she immediately noticed a difference between how Esther was at birth and how Ethan was. She says Esther had been curled up in a tight little ball, whereas Ethan was more relaxed and sprawled out. Then, the doctor had some concerns that he might’ve aspirated, so they took him to the NICU. When he came back, he told them that he believed Ethan had Down Syndrome. His diagnosis had been missed in utero. The doctor also informed them that Ethan had all four chambers of his heart. This was wonderful news, because often times, babies born with Down Syndrome have significant heart problems.
The diagnosis landed on Alison and Matthew differently. Alison says it actually wasn’t a shock to her system, like one might think. This is in large part due to how her mother modeled love and acceptance of people who are different all throughout her childhood. “Looking back… I can see how God prepared me for this, like my whole life. I was raised, my mom taught us, you know, like when people were different from us, ‘God made everyone, He made them different. Everyone has the same value.’ She taught us that. And I just took it to heart as a kid.” Growing up, Alison had friends with special needs, and friends with siblings who had special needs, whom she never thought of any differently or less. Therefore, she says, “it wasn’t a crushing moment to me. Like, he’s a person, I love him. God gave him to me, you know, like he has a purpose in life.”
For Matthew, it was harder to process. “‘Down Syndrome.’ Those words hit me like I had been punched in the stomach and the wind knocked out of me where I couldn’t breathe in for a few seconds,” Matthew says. “We had no prior knowledge.”
But God.
In His grace and kindness to the Kellys, He gave them the exact resources and community they needed to learn how to parent a child with Down Syndrome. “My boss at the time in the R&D Engineering group I was in had an adult daughter with Down Syndrome,” Matthew recalls. “He was also a Christian. God definitely positioned me on his team at work for a reason. He constantly assured me I could be a dad of a child with a disability and that forecasting a dim future in my own head didn’t have to be reality. He told me stories he remembered from when his daughter was a child… He definitely talked me down from many of the fears I had.”
Too, their doctor was incredibly encouraging and hope-filled. “He’s like, ‘you know, he has a great chance at life,’” Alison says. “He, my doctor, had an adult cousin with Down Syndrome. He knew all about Down Syndrome; he knew about a ministry that he handed us material about — right there in the hospital — told us about his cousin, you know, he was very kind, very encouraging.”
It wasn’t just the delivering doctor who was positive. It was also their pediatrician. And their cardiologist. This, tragically, is not always the case with health care providers. “This is the opposite of a lot of people who have babies with Down Syndrome,” Alison explains. “[The cardiologist] was like, ‘you know, I have a kid that I kind of mentor with Down Syndrome, and he is an artist,’ and he was like just extremely encouraging, like, ‘give him every opportunity in the world. He’s going to do great. He can do all the things. He’s just going to do it on his own timeline.’ And I’m just like, ‘thank you, God,’ because I know for a fact so many people are told horrible things when they have babies with Down Syndrome. … I was like, ‘God, you are so good.’ …We could’ve [gotten] somebody who could have been negative.” God surrounded them with uplifting coworkers and providers who offered them resources and hope, not fear and despair.
Heartbreakingly, though, there were some who openly suggested abortion to her. She resolutely told those people that that was not an option. “I actually have had people say, ‘did you know beforehand? You know, you can do something about that.’ And I was like, it wouldn’t have literally mattered.”
The early years with Ethan consisted of figuring out how to adjust to not only having two children, but also having one with special needs. “It was more challenging than I thought it was going to be. Because I was just like, ‘he’s going to eat and sleep and poop,’ and like, it turned out all of those things were problems. Like every one of them,” Alison explains. “It was a lot of work, but I just did it. I mean, it was just like, ‘this is what you do.’”
Matthew agrees, but adds that there were lovely surprises, too. “It required more patience from us as parents to go over things repeatedly. Then sometimes he would shock us and need no help at all to do a task you thought was out of his reach. I learned that I put limits on my thoughts of what he was capable of, yet he was proving me wrong. I’m so glad when he proves me wrong.” Alison has seen this as well. “I have learned to NEVER underestimate a person with Down Syndrome… if you do, you might find the wool has been pulled over your eyes. I have seen both of my boys taking full advantage of someone thinking they are not capable of doing something. They are also very excellent problem solvers if they have the right motivation.”
The Kellys experienced another miscarriage after Ethan, before Evan. “It’s heartbreaking when you have one. And then the second one is more heartbreaking,” Alison says. As to how she got through it, she says she constantly talked to God. “He kept showing me, like, ‘I’m here, I love you.’ He just kept showing Himself, like, as far as just being faithful and providing even whenever it was painful, you know?”
Faithful indeed He was, because soon they got pregnant again, this time with Evan. They learned about a blood test that would give them helpful information about Evan. The two had met each other for lunch when the doctor called and asked them to come in. They were terrified at what he was going to say, because after having two miscarriages, they feared it was a fatal fetal anomaly.
“As we drove in our cars, we both prayed, ‘God, if we are going to do this again with another child, can the diagnosis be Down Syndrome,’” Matthew says. “‘Of all the things that can be diagnosed in that test, Down Syndrome is the one we know something about and feel like we are prepared the best for.’”
Sure enough, that’s exactly what the doctor told them. “…we both breathed a sigh of relief and in a strange way were happy that we were getting this news,” Matthew says. “Only God could take a diagnosis that scared me to death just a few years ago and make it somewhat of a relief.”
To be sure, life with two special needs children has challenges and limitations (dates require much more intentionality and are thus that much more appreciated). It can also at times can be scary — for example, Evan had to have open-heart surgery at just nine weeks old. Too, the boys require a lot of attention, which means there’s often less for Esther than they would like. (Though they do, of course, make it a point to get special one-on-one time with Esther.) However, there are precious, cherished moments in their lives that they wouldn’t trade for anything.
For example, Matthew delights in the fact that Evan enjoys music and worship, just like his old man. He plays his toy guitar and sings songs to Jesus. “He’s also the first one to greet me at the door. He still runs down the hall saying ‘Daddy’s home’ and gives me the biggest hug.”
Alison treasures Ethan’s empathetic nature and his firm commitment to prayer. “Ethan is very perceptive of others’ emotions and sees people that most people are inclined to ignore. Ethan also loves to pray! If we have another serving and add a fork or get a drink refill, we pray for it, and this is not negotiable. Ethan will not move on until we have prayed and thanked God for it.”
They both love Esther’s heart for her brothers. “Sweet Esther, I’m so proud of her,” Alison says. “She is so great with kids and is able to help them be less anxious and helps with her brothers so much. …She also pays attention to how people are treated. For example, she knows the names of kids at her school who have special needs, and she is defensive if she feels they are being mistreated. …God is doing great things with this girl!”
As far as how all three of the kids relate to one another, Alison says it’s not too far off from other families. “Esther, Ethan, and Evan are like any other siblings in the way they interact with each other. They can all annoy each other, but they also love each other and are capable of playing together like other siblings… it just may look a little different.”
The Kellys are plugged into the West Little Rock Campus, and in particular, the Embrace Special Needs ministry. Embrace has provided a safe place for Ethan and Evan to thrive on Sunday mornings. It also allows Matthew, Alison, and Esther the ability to be fully present to worship with the body of Christ and soak in the sermons. Too, the Women’s Bible Study that Alison co-leads is for moms of kids and adult children with special needs. “I am especially thankful for the work that [Special Needs Pastor] Amy Moore does to really keep families connected,” Alison says. “It is far more difficult, many times, to have a community when you have children with special needs. A lot of times, it is difficult for others to relate, so it is wonderful to be around other parents who get it.”
In the trials and the triumphs, the Kellys have learned the best thing that they can do is to rely completely on the Lord. “There are times I feel like I am totally falling apart (and I probably am),” Matthew says, “but there is a God holding me together like a cast around a broken limb holds it together until it heals.”
“For me,” Alison says, “the thing that has helped me the most is 100% the grace of God and His faithfulness. I don’t know how people get through these things without the hope and grace of Christ.”
As Matthew reflects on being a dad of kids with special needs, there’s one aspect that’s stuck out to him perhaps the most. “I’ve met some people that say, ‘man you have a hard life’ or ‘wow, how do you guys do what you do’ and many other statements with a similar sentiment. I know they are encouraging, and I know that they truly may think our ‘life is hard’ or that what we go through seems impossible. In the same way, I look at people who are succeeding in life but came from a broken home and wonder ‘how are they doing it.’ I came from a very stable home and benefit from it a lot. I meet people that have ‘typical children,’ yet when you hear their story, you think how hard things have been for them in the last few seasons of life. I really think none of us live a ‘normal’ life or a ‘typical’ life. We all have trials that we encounter; we all have valleys that we walk through, and God will prove Himself faithful in each of those if we lean on Him.”
If interested in serving with Embrace Special Needs, please reach out to Special Needs Pastor Amy Moore, or click here to learn about the ministry.