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Matthew and Alison Kelly, who are members of Fellowship\u2019s 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\u2019s Bible Study.<\/p>\n
Their sons, Ethan and Evan, both have Down Syndrome.<\/p>\n
Their rhythm of life, therefore, is marked by constant change. \u201cRhythm to me,\u201d Matthew explains, \u201cis 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<\/sup> of a second in some cases). So for us, the rhythm is variable, which makes it not really a rhythm, more like a \u2018take it as it comes.\u2019 We have normal things that we expect to do each week, but we know they can be interrupted at any time and change.\u201d<\/p>\n Echoing Matthew\u2019s sentiment, Alison says that \u201crhythm 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.”<\/p>\n <\/p>\n In the melodious words of Fraulein Maria, \u201cLet\u2019s start at the very beginning, a very good place to start.\u201d<\/p>\n 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 \u201cI started to realize God is real. Jesus is the only way. And I wanted to be, you know, definitely in God\u2019s family.\u201d She also says a big, transformative moment for her was realizing that her sin was just as serious as the more \u201cobvious\u201d sins. One of her main struggles has been pride, and she notes how much sneakier it is than other sins. \u201cIt was like God just revealed that to me right then,\u201d Alison recalls. There aren\u2019t those who need \u201cless Jesus\u201d than others.<\/p>\n An outdoorsy woman raised by an outdoorsy family \u2014\u00a0they hiked every summer at Red River, New Mexico \u2014\u00a0Alison 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.<\/p>\n \u201cYou get up and it\u2019s dark and it\u2019s 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.\u201d<\/p>\n 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 \u2014\u00a0at his 14th<\/sup> birthday party, of all places. \u201cWhat I thought would be a fun night of watching movies, playing video games, and eating junk food became an \u2018intervention.\u2019 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\u2019m reminded \u2018neither hot nor cold\u2026\u2019 They embodied that verse in Revelation Chapter 3 very well.\u201d<\/p>\n His friends\u2019 strong words of loving conviction rang in his ears after that night. \u201cA 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\u2019t sing the words that I wasn\u2019t living\/didn\u2019t know if I believed in\u2026 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.\u201d<\/p>\n Speaking of worship, music has also been a central feature of Matthew\u2019s life since he was a young child. He caught the bug early. \u201cSome 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\u2019t if they walked past my bedroom,\u201d Matthew recalls. \u201cAt 14 years old, I found an old guitar that my dad had sitting in the corner and started learning. I\u2019ve 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\u2019ve made about seven guitars myself; some of them I use at church, and some I\u2019ve built for customers.\u201d<\/p>\n In addition to their faith, Matthew and Alison share a hobby: rock climbing. In fact, that\u2019s how they met! She asked Matthew to belay her for a climb she was about to do. The rest, as they say\u2026<\/p>\n A few months after Matthew and Alison got married, Alison got pregnant with Esther. She was born in July of 2011. \u201cThat little child was just an angel,\u201d Alison remembers fondly. \u201cShe was an absolute angel. Sweet baby girl.\u201d<\/p>\n As happens with every couple stepping into first-time parenthood, Alison and Matthew both quickly realized the ways in which they needed to grow. \u201cWe 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,\u201d Matthew says. \u201cI 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\u2026 \u2018Some people gotta learn the hard way, I guess I\u2019m the kinda guy who has to find out for myself.\u2019\u201d<\/p>\n For Alison, her personal work had to do with, well, work! \u201cI was a little bit of a workaholic\u2026 I realized, I was like, \u2018I can\u2019t be a workaholic and a good mother,\u2019 and I wanted to be a good mother. So, I quit my job.\u201d<\/p>\n Life continued on as normal for the new parents, until Alison became pregnant again, and tragically suffered a miscarriage. \u201cIt was terrible,\u201d Alison says. A few months later, by God\u2019s grace, Alison was pregnant again, this time with Ethan!<\/p>\n As it turns out, Ethan was a Christmas miracle \u2014 he was born on Christmas Day! Alison had been telling herself and others, \u201cI\u2019m not going to have a Christmas baby.\u201d But, of course, that\u2019s exactly<\/em> what ended up happening!<\/p>\n 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\u2019ve 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.<\/p>\n The diagnosis landed on Alison and Matthew differently. Alison says it actually wasn\u2019t 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. \u201cLooking back\u2026 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, \u2018God made everyone, He made them different. Everyone has the same value.\u2019 She taught us that. And I just took it to heart as a kid.\u201d \u00a0Growing 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, \u201cit wasn\u2019t a crushing moment to me. Like, he\u2019s a person, I love him. God gave him to me, you know, like he has a purpose in life.\u201d<\/p>\n For Matthew, it was harder to process. \u201c\u2018Down Syndrome.\u2019 Those words hit me like I had been punched in the stomach and the wind knocked out of me where I couldn\u2019t breathe in for a few seconds,\u201d Matthew says. \u201cWe had no prior knowledge.\u201d<\/p>\n But God<\/em>.<\/p>\n In His grace and kindness to the Kellys,\u00a0He gave them the exact resources and community they needed to learn how to parent a child with Down Syndrome. \u201cMy boss at the time in the R&D Engineering group I was in had an adult daughter with Down Syndrome,\u201d Matthew recalls. \u201cHe 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\u2019t have to be reality. He told me stories he remembered from when his daughter was a child\u2026 He definitely talked me down from many of the fears I had.\u201d<\/p>\n Too, their doctor was incredibly encouraging and hope-filled. \u201cHe\u2019s like, \u2018you know, he has a great chance at life,\u2019\u201d Alison says. \u201cHe, 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 \u2014\u00a0right there in the hospital \u2014\u00a0told us about his cousin, you know, he was very kind, very encouraging.\u201d<\/p>\n It wasn\u2019t 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. \u201cThis is the opposite of a lot of people who have babies with Down Syndrome,\u201d Alison explains. \u201c[The cardiologist] was like, \u2018you know, I have a kid that I kind of mentor with Down Syndrome, and he is an artist,\u2019 and he was like just extremely encouraging, like, \u2018give him every opportunity in the world. He\u2019s going to do great. He can do all the things. He\u2019s just going to do it on his own timeline.\u2019 And I\u2019m just like, \u2018thank you, God,\u2019 because I know for a fact so many people are told horrible things when they have babies with Down Syndrome. \u2026 I was like, \u2018God, you are so good.\u2019 \u2026We could\u2019ve [gotten] somebody who could have been negative.\u201d God surrounded them with uplifting coworkers and providers who offered them resources and hope, not fear and despair.<\/p>\n Heartbreakingly, though, there were some who openly suggested abortion to her. She resolutely told those people that that was not an option. \u201cI actually have had people say, \u2018did you know beforehand? You know, you can do something about that.\u2019 And I was like, it wouldn\u2019t have literally mattered.\u201d<\/p>\n <\/p>\n 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. \u201cIt was more challenging than I thought it was going to be. Because I was just like, \u2018he\u2019s going to eat and sleep and poop,\u2019 and like, it turned out all of those things were problems. Like every one of them,\u201d Alison explains. \u201cIt was a lot of work, but I just did it. I mean, it was just like, \u2018this is what you do.\u2019\u201d<\/p>\n Matthew agrees, but adds that there were lovely surprises, too. \u201cIt 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\u2019m so glad when he proves me wrong.<\/strong>\u201d Alison has seen this as well. \u201cI have learned to NEVER underestimate a person with Down Syndrome\u2026 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.\u201d<\/p>\n The Kellys experienced another miscarriage after Ethan, before Evan. \u201cIt\u2019s heartbreaking when you have one. And then the second one is more heartbreaking,\u201d Alison says. As to how she got through it, she says she constantly talked to God. \u201cHe kept showing me, like, \u2018I\u2019m here, I love you.\u2019 He just kept showing Himself, like, as far as just being faithful and providing even whenever it was painful, you know?\u201d<\/p>\n 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.<\/p>\n \u201cAs we drove in our cars, we both prayed, \u2018God, if we are going to do this again with another child, can the diagnosis be Down Syndrome,\u2019\u201d Matthew says. \u201c\u2018Of 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.\u2019\u201d<\/p>\n Sure enough, that\u2019s exactly what the doctor told them. \u201c\u2026we both breathed a sigh of relief and in a strange way were happy that we were getting this news,\u201d Matthew says. \u201cOnly God could take a diagnosis that scared me to death just a few years ago and make it somewhat of a relief.\u201d<\/p>\n 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 \u2014\u00a0for example, Evan had to have open-heart surgery at just nine weeks old. Too, the boys require a lot of attention, which means there\u2019s 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\u2019t trade for anything.<\/p>\n 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. \u201cHe\u2019s also the first one to greet me at the door. He still runs down the hall saying \u2018Daddy\u2019s home\u2019 and gives me the biggest hug.\u201d<\/p>\n Alison treasures Ethan\u2019s empathetic nature and his firm commitment to prayer. \u201cEthan is very perceptive of others\u2019 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.\u201d<\/p>\n They both love Esther\u2019s heart for her brothers. \u201cSweet Esther, I\u2019m so proud of her,\u201d Alison says. \u201cShe is so great with kids and is able to help them be less anxious and helps with her brothers so much. \u2026She 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. \u2026God is doing great things with this girl!\u201d<\/p>\n As far as how all three of the kids relate to one another, Alison says it\u2019s not too far off from other families. \u201cEsther, 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.\u201d<\/p>\n 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\u2019s Bible Study that Alison co-leads is for moms of kids and adult children with special needs. \u201cI am especially thankful for the work that [Special Needs Pastor] Amy Moore does to really keep families connected,\u201d Alison says. \u201cIt 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.\u201d<\/p>\n In the trials and the triumphs, the Kellys have learned the best thing that they can do is to rely completely on the Lord. \u201cThere are times I feel like I am totally falling apart (and I probably am),\u201d Matthew says, \u201cbut there is a God holding me together like a cast around a broken limb holds it together until it heals.\u201d<\/p>\n \u201cFor me,\u201d Alison says, \u201cthe thing that has helped me the most is 100% the grace of God and His faithfulness. I don\u2019t know how people get through these things without the hope and grace of Christ.\u201d<\/p>\n As Matthew reflects on being a dad of kids with special needs, there\u2019s one aspect that\u2019s stuck out to him perhaps the most. \u201cI\u2019ve met some people that say, \u2018man you have a hard life\u2019 or \u2018wow, how do you guys do what you do\u2019 and many other statements with a similar sentiment. I know they are encouraging, and I know that they truly may think our \u2018life is hard\u2019 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 \u2018how are they doing it.\u2019\u00a0 I came from a very stable home and benefit from it a lot. I meet people that have \u2018typical children,\u2019 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 \u2018normal\u2019 life or a \u2018typical\u2019 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.”<\/p>\n If interested in serving with Embrace Special Needs, please reach out to\u00a0<\/em>Special Needs Pastor Amy Moore<\/em><\/strong><\/a>,<\/em>\u00a0or\u00a0<\/em>click here<\/em><\/strong><\/a>\u00a0to learn about the ministry.<\/em><\/p>\n [\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>\n","protected":false,"gt_translate_keys":[{"key":"rendered","format":"html"}]},"excerpt":{"rendered":" Matthew and Alison Kelly, who are members of Fellowship\u2019s 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\u2019s Bible Study. Their sons, Ethan and Evan, both have […]<\/p>\n","protected":false,"gt_translate_keys":[{"key":"rendered","format":"html"}]},"author":16,"featured_media":30904,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","wds_primary_category":0,"footnotes":""},"categories":[494],"tags":[],"class_list":["post-30902","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-written"],"acf":[],"gt_translate_keys":[{"key":"link","format":"url"}],"_links":{"self":[{"href":"https:\/\/www.fellowshipar.com\/wp-json\/wp\/v2\/posts\/30902","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.fellowshipar.com\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.fellowshipar.com\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.fellowshipar.com\/wp-json\/wp\/v2\/users\/16"}],"replies":[{"embeddable":true,"href":"https:\/\/www.fellowshipar.com\/wp-json\/wp\/v2\/comments?post=30902"}],"version-history":[{"count":0,"href":"https:\/\/www.fellowshipar.com\/wp-json\/wp\/v2\/posts\/30902\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.fellowshipar.com\/wp-json\/wp\/v2\/media\/30904"}],"wp:attachment":[{"href":"https:\/\/www.fellowshipar.com\/wp-json\/wp\/v2\/media?parent=30902"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.fellowshipar.com\/wp-json\/wp\/v2\/categories?post=30902"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.fellowshipar.com\/wp-json\/wp\/v2\/tags?post=30902"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}