In honor of Down Syndrome Awareness Month coming in October, we wanted to chat with a couple of our favorite moms, Eilene Franks and Katie Harder, both raising children diagnosed with Down Syndrome. As you will see from this conversation, there is so much more to a person than a diagnosis, but we do want to shine a light on the special children they are raising and how we, as a church and community, can better understand and support families like theirs.
HEATHER: HELLO, LADIES! PLEASE TELL US A LITTLE ABOUT YOUR FAMILIES.
Eilene: My husband, Jason, and I have been married 11 years. We met at a connection class at Council Road. Jason works as a counselor at A Chance to Change and I work as a NICU Family Advocate at The Children’s Hospital. We’ve been blessed with three awesome, gorgeous, rambunctious kids: Hudson, 8; Bryson, 5; and Hadley, 2. Hudson is rockin’ an extra copy of his 21st chromosome, aka Down syndrome.
Katie: Matt and I met when we were both teachers at an elementary school in Yukon. We have also been married 11 years. Matt is a special education teacher at The Children’s Center in Bethany, and I am an elementary school secretary at Skyview Elementary (where all of our kids go to school). We have 3 children, Knox (9), Canon (7), and Millie (5).
H: HOW DID YOU DISCOVER THAT YOU WOULD BE THE MOTHER OF A CHILD WITH DOWN SYNDROME? WHAT WERE YOUR INITIAL THOUGHTS AND/OR CONCERNS?
E: We went in for our 20 week gender ultrasound, and the ultrasound tech said she would like us to see the doctor before we left. Since Hudson was our first child, we thought this was normal. She came in and said the ultrasound found some areas of concern that she wanted to discuss with us. She encouraged us to not worry too much, but they found a duodenal atresia, which is a fairly high marker for Down syndrome. We were in shock. A million thoughts were going through our heads. We decided to call some family so they could pray for us. We had planned a big gender reveal party that weekend and had family coming from out of state. We weren’t sure what to do--cancel or continue as planned. We decided to continue. We knew that, no matter what, every life is a life worth celebrating. Whether or not Hudson was going to have DS didn’t change that. He was a blessing and we would celebrate his life.
K: Matt and I started the process to internationally adopt a little girl from China in October of 2017. At the time, we knew that she would have special needs, but we didn’t know what type or how severe. In November of 2018, we saw a couple of short videos of a little girl who was diagnosed with Down syndrome. She was this happy little girl who was dancing and seemed to have such a cute personality. I was instantly drawn to her! We prayed hard about it and God confirmed that He was calling us to be her parents. Our primary concerns were the potentially unknown health issues that are common with a Down syndrome diagnosis (i.e. heart defects), or anything else that the doctors in China may have missed. The actual Down syndrome was not a concern! We officially brought her home in May of 2019 and we will be forever grateful to the Lord that He led us to her because we cannot imagine our lives without her.
WHAT HAS BEEN THE BIGGEST CHALLENGE FOR YOUR FAMILY, AS YOU RAISE A CHILD WHO HAS SPECIAL NEEDS?
E: I think the hardest thing is the unknown. A dear friend visited me during one of our loooong NICU days. She sat with me as I cried and shared my fears with her. And what she said has stuck with me for over 8 years. ‘Eilene, you know Hudson doesn’t belong to you, right? You’ve only been entrusted with him for a season.’ Though my brain knew that, hearing her say it spoke to my heart. When fears creep up, I think back to what she told me. The ongoing challenges he/we experience are more social/emotional. Being the parent of a child with a developmental disability, there is an ongoing battle to prove the worth of your child. We are his advocate, and we pray someday he can also advocate for himself. Our job, with Hudson, is the same as with our other kids--love him, support him and encourage him to fulfill God’s plan for his life. We will shout his worth from the rooftops until everyone else sees his worth just as we do--a child of the King.
K: With Millie, our biggest challenge is the language barrier. Not only can Down syndrome make enunciation difficult, but her native language is Mandarin. Working through those language barriers has been a struggle at times, but she continues to show us how smart and adaptable she is. Her receptive language abilities are very high. And if she can’t verbally express a need or want, she will find a way! She understands so much and her expressive language has grown exponentially in just one year.
H: WHAT HAS BEEN THE BIGGEST BLESSING OR LESSON YOU'VE LEARNED, RAISING A CHILD WITH DOWN SYNDROME?
E: We are a part of an amazing community of people. Hudson introduced us to a world we never knew we were missing out on--a group of people we never knew we always needed. It’s been a hard, exhausting, emotional nine years. Some of our closest friends are parents of differently-abled individuals. They know when to listen, when to hug us, when to let us be angry, and also when to CELEBRATE. Every kid, DS or not, will reach their milestones in their own time. Since we wait a little longer and watch Hudson work SO hard, it just means we get to celebrate bigger!
K: You’ll see on many of my pictures of Millie, I include the hashtag #theluckyfew. This is a movement recognizing that loving a child with Down syndrome is a blessing and gift from the Lord. This experience has taught us new depths of love and compassion. People who have Down syndrome are some of the most loving, caring, kind, accepting people you will ever meet. Their love for life is contagious! Millie loves unconditionally and we learn so much from her daily! We also are regularly in awe of the Lord’s providence to turn Millie from an orphan to a daughter.
H: WHAT DO YOU WISH PEOPLE KNEW ABOUT CHILDREN WITH SPECIAL NEEDS?
E: You don’t have to be scared of our kiddos. It takes some extra effort to create friendships, but it’s worth it. Please talk to your kids about peers who may be different. It can be awkward at times (for you and for us) but questions are natural--and it’s ok that they don’t always come out gracefully. I had a child on the playground ask me why Hudson looks funny. Sure, it punched me in the gut a bit, but it was an innocent question. I just explained to her that God created Hudson differently; he looks different and learns things in a different way, but that he still loves to play just like she does!
You don’t have to make things complicated, just answer on their level, just as you would any other questions. I encourage you to seek out relationships with a family who may look different than yours. There is beauty in diversity. God took the time to so intricately design each and every one of us. Why wouldn’t we want to recognize and celebrate that?
K: I wish people knew that children with Down syndrome are individuals like everyone else. They have their own likes and dislikes, strengths and weaknesses, and other traits that make them unique. Their special need is only a tiny fraction of who they are. I would love for people to know that there is a spectrum with Down syndrome, just like many other disorders. Just because our daughter has Down syndrome doesn't automatically mean that she is going to be delayed in one area or the other. Down syndrome does not define who she is. She is smart, sassy, and loves fiercely!
H: HOW CAN "THE CHURCH" (AND OUR CHURCH) BE A BLESSING TO FAMILIES LIKE YOURS?
E: I would encourage the Church to have ongoing conversations with families like ours. Our family may look different and function differently, but we want to be a part of the community. Sometimes that’s really hard to do. The dynamic of our family makes it difficult to participate in church and community events. Childcare isn’t easy. Because of those issues, there are very few people willing to put in the time and effort to get to know Hudson and take on his behaviors.
I’m so thankful for the incredible blessing of church members like Sarah, Carisa, Robbyn and Kara, who have been willing to work diligently to meet Hudson’s needs on Sunday mornings. Another powerful example of how to bless a family like ours, is the Jessup family, who have shown us the love of Christ, outside of the walls of our church, for six years now. Our chaos didn’t scare them away…they KEPT COMING BACK. They have poured into our family over and over. They never said ‘let us know if you need anything’. They said, ‘we are bringing dinner tonight’ or ‘how long has it been since you and Jason had a date’ or ‘yes, we can change our plans to take care of the kids’ when emergencies arose. So, just keep coming back. Know that it’s messy and different and scary, but that we need relationships, just like everyone else.
K: Society, in general, has made great strides in recognizing, appreciating and seeing value in the lives of individuals with disabilities or special needs. With that said, there is still progress that needs to be made. In the Church specifically, there is a common sentiment that the church is welcoming of everybody and will take you “as you are”, but in the case of Church-goers with special needs, we often look to “someone else” to take on the responsibility of their care and accommodations. Matt’s work at a children’s hospital with residents who have acute and long-term medical needs (related to special needs) often leads people to say, “I appreciate and admire the work you do but I couldn’t do it.” On one hand, we understand that it’s difficult work and the Lord does not call everyone to it, but on the other hand we feel that the Church is biblically instructed to collectively care for the needs of the Body of Christ and the burden of a particular need shouldn’t fall on a small population of the Body.
We believe our church sees the value in children and families with disabilities, and as such we would love to see a team dedicated to the ministry of our church members with disabilities. We envision that this team would review different ways to address needs and drive greater inclusivity.
H: Thank you, both, for sharing your hearts and your family’s stories with us. I see the work you are doing to love, raise, advocate, and educate, and I applaud your efforts. May we all love the world better, especially children who have special needs, because of your families.
Author’s note: Wondering how you can show your support? The Down Syndrome Association of Central Oklahoma is having their biggest awareness and fundraising event of the year, the Down Syndrome Festival & 5K, on September 26th. This year looks a little different due to COVID, but check out the link for more information about a virtual run and awareness parade downtown: dsaco.enmotive.com.
Meet the Author!
Heather McAnear is a wife, mom, author and speaker with a passion for sharing God's truth to help women understand their uniquely beautiful design and how to use it for God's glory! In fact, Heather hosts the Uniquely Beautiful Stories podcast on iTunes in hopes do just that! She loves teaching young married couples with her husband, homeschooling their three children, traveling the world, enjoying good chocolate and long conversations in coffee shops. CRBC has been her church home for two decades and she is thrilled to be part of the Women's Ministry team, helping women connect with each other and grow in their walk with Jesus!