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Church and Families With Specially Challenged Kids #5 (by Kamy Bibbee)

2012 April 4
by Mike

I wish you could spend some time with Kevin and Kamy Bibbee and their girls, Megan, Kaylin, and Morgan. What an amazing family—even with challenging circumstances. I’ve known Kamy since she was a college student; and I’ve been blessed abundantly to follow her and Kevin on this journey of parenting their three precious girls.

I’ve asked Kamy to write for this series. Read and be blessed!

– – – –

God’s plan for his church is so much more than going to a building for a short time every Sunday morning checking off a list of activities. The church is his family, saved by grace, coming together to keep on growing in our love for him and for each other.

But it isn’t always easy…is it?

My husband, Kevin, and I have three precious girls, two of them with special needs and significant dependencies. Megan, our oldest, was born with a rare chromosomal abnormality—an unbalanced translocation—a combination so rare that when she was diagnosed, they couldn’t find anyone else in the world like her.

Since Megan’s birth, I feel like I was yanked onto a roller coaster ride that I wasn’t quite ready for…and most days I have white knuckles from hanging on for dear life! Some days hold hairpin curves and hills that take my breath away; other days hold amazing views that I would never see if I wasn’t on this particular ride. I strain to see what is coming up so I can be ready for it, but the fact is the upcoming tracks are just out of my sight. Tomorrow, next month, next year—I don’t know what’s coming next. No one does . . . except the One who holds time in his hands. So we just keep hanging on.

I do remember experiencing a clear picture of what the church should look like. It happened soon after Megan was born. We had gone home with our newborn daughter, and within four hours our world turned upside down. Megan quit breathing . . . turned blue . . . we rushed back to the hospital where they hooked Megan up to all those machines. Our church family was barely over 100 people at that time, and more than 60 of them were in the NICU waiting room with us. The team of doctors came to get our “history” and ask 3,489 questions (maybe a couple more—I can’t remember!), and their eyes grew wide when they walked into our waiting room packed with people. They whispered, “Do you want to go somewhere so we can talk privately?” We said no, we’d rather stay.

One doctor looked around and asked, “Are all these people your family?” Kevin did not hesitate before he replied, “Yes, this is our family.” They were there—not saying a lot of words . . . just staying close by . . . sitting for hours with us . . . bringing us food when we didn’t want to leave the waiting room . . . praying with us . . . just being near us. Thinking back on that time more than 16 years ago, I clearly remember feeling loved and supported by our church family just being beside us.

We hung on for the ride over the next several years, and God added Kaylin and Morgan to our family. Kaylin is now a healthy, typical 11-year-old—oops, she’s saying Performer5, “MOM! I’m almost 12!” Morgan was born in 2002 with the same genetic abnormality big sister Megan has—a faith-shaking time for us. This was a very different answer to our prayers than we had expected. But our family joke is that we have twins; they were just born seven years apart!

One time I was coming into the church building pushing Megan and Morgan in their wheelchairs. (Yes, I can push two chairs at one time; in fact, I feel strange when I’m not pushing a wheelchair!) Anyway, this particular Sunday morning a few years ago I remember someone opened the door for us and as I went in, people were moving toward the walls and telling their children to get out of our way—and I remember thinking, “Why do I feel like we are Moses with the Red Sea parting before us?” I didn’t feel cared for; I felt contagious! Were these people, my church family, purposely trying to hurt us? Of course not! I know that. But I remember thinking, Please, stay IN our way . . . make it hard for us to get down the hall . . . turn around and look at my girls . . . they would enjoy being greeted . . . I need a hug . . . take time to find out what makes my girls smile . . . touch us . . . I know we may be different . . . but we are the same in our need for love and connection.

When we moved to North Carolina three years ago, a family helped us by organizing a rotating schedule for people to take care of Megan and Morgan so I can be in the auditorium. This has been absolutely wonderful! And can I just say how nice it is for someone else to recruit helpers for my children? It’s tough to ask and I do understand some people are hesitant, but having someone else in charge of this is nice!

One of the greatest things about this rotating schedule is how other people get to know my girls better. When we walk into the church building now, I don’t get more than a few feet without hearing, “Hey, girls! How are you?” Megan and Morgan don’t answer with words, but they are seen and loved on by our church family.

A few months ago the teens in our church family said, “Megan is 16. Why isn’t she in class with us?” So now Megan IS in class with them. They even threw her a birthday party recently! I don’t think they have any idea how they are blessing our family by just wanting to be beside us.

We are hanging on for this crazy ride called LIFE. Our church family is on this journey with us—we are learning a lot together. I’d rather be stumbling and learning and growing . . . and crying and laughing and loving and longing along with other people who are stumbling and learning and growing…and crying and laughing and loving and longing right beside me. It’s so much better than trying to do this LIFE thing on my own.

God has a plan for His family—and you know what? I think we should stick pretty close to Megan and Morgan. They’ll keep us heading in the right direction toward home—where we belong.

19 Responses leave one →
  1. Dusty permalink
    April 4, 2012

    Thank you for this Kamy.

  2. Sara Barton permalink
    April 4, 2012

    Thank you for sharing your family story Kamy. I love it when I see you and your girls! You inspire me every time I see you.

  3. Cindy & Larry permalink
    April 4, 2012

    Wonderful expression of life with special needs, special challenges, and special blessings. Thank you for the insightful sharing!

  4. April 4, 2012

    What a beautiful piece you have written! It is a blessing that your church family has embraced you and your family with love and grace. Those of us who know these kids know we see the face of Jesus.

    Almost 30 years ago we were blessed with Alex, who has Cornelia de Lange Syndrome. I remember the day we, along with two other families, tried to organize a team to take our children so that we could sit in the worship. We had a very large church, however, it didn’t go well. When it was presented, interest was not there. No one volunteered. We were devastated at that lack of interest.

    We used to sit in the cry room with her, with a window into the auditorium. This was a blessing, since it was randomly used. Then, it was turned into a bathroom. We then moved into a classroom down the hall that had a speaker. We saw no one, and often had to leave early. We quit going.

    So, after periods of not being able to go at all, we finally settled on a church that worked a little better for us.

    With the increasing numbers of special needs births, I would encourage every congregation to put in place a team of leaders who focus on and serve these families.

    Life is hard, at best. We need renewal through worship. Serving these children is serving Jesus.

  5. April 4, 2012

    Ah, Marlene. We remember that meeting well. I believe you and Diane shared that little room in back while I was preaching! So good to hear from you. We have wonderful memories of Alex.

  6. Kim Johnson permalink
    April 4, 2012

    First, I just wanted to say thank you for sharing this story!

    We live in NC, too, and attend the Brooks ave church of Christ where we are apart of a ministry called the Eagles, as our sweet daughter has some challenges. It started small several years ago and has now grown to a very large size group of special needs kids and their families, which meets weekly!! Also, the church hosts a carnival for special needs kids once a year, and it’s coming up on the 21st of April at 11am-2pm, if there is any possible way of y’all joining in!! If you think you may be able to, (not sure where you live) please don’t hesitate to call me 919-360-7726 as I’d love to meet you all!

  7. Kim Johnson permalink
    April 4, 2012

    People from all across the state and a few other places as well, attend. Last year there were about 700 kiddos! (Just to say, it’s a really fun event!) The main mission of the ministry is to love people and show Jesus’ love in all ways possible, while allowing the parents to be in worship. Volunteers teach our daughter about Jesus in ways that she needs, and love on her, while we have peace that she is well cared for. I can’t tell ya how huge that is, and we are very blessed to be apart of the congregation. If anyone ever would like more info on starting such a ministry at your church, please don’t hesitate to call!! My number again is 919-360-7726.

  8. Kim Johnson permalink
    April 4, 2012

    Sorry, I meant to say, Brooks Ave is in Raleigh, NC. :)

  9. julie permalink
    April 5, 2012

    I was dry eyed until I got to the part of the teens wanting your daughter to be a part of their lives. Love it! I can see from your faces that you continue to experience joy and laughter….thank you for sharing your story with us.

  10. Smithy permalink
    April 5, 2012

    Like Julie, I find that story to be one of the best illustrations of koinonia that I’ve ever come across. Thanks, Kamy.

  11. James & Carolyn Lichtblau permalink
    April 6, 2012

    What an incredible testimony to your love for God and for your family. What a testimony to the love the Hickory church has for you all. Thank you for sharing your heart–it is such a blessing. You are an inspiration to so many. We love and miss each one of you. Someday we will travel to NC to visit:) May this verse encourage your hearts, “The only thing that counts is faith expressing itself through love.” Galatians 5:6

  12. April 6, 2012

    Dear sweet Kamy, Your beautiful servant heart has inspired me since our college days. Your dedication to your family has given me hope during some of my darkest days as a mom. You are one of the kindest, strongest, bravest women I know.

  13. tia mcentire permalink
    April 7, 2012

    Any time I get asked who was a major spiritual influence in your life your name is first to come to my mind. I love this article so much. It is exactly why I praise God for bringing you to my life. I love you and Kevin!

  14. Kristin White permalink
    April 7, 2012

    Kamy – I was drawn to the article when I saw “special needs”. Quite sure I did not know you had ‘special blessings’ in your life. I enjoyed reading the story so very much. SO much of what you and others have said in reply is in fact also our story and experience in some cases with our son, Aaron. The parts about rarity of the condition, actually sitting in the auditorium at church, receiving help, receiving the “I don’t really know how to respond” scenario, etc was a real ‘wow’ moment for me, seeing that in fact someone else is/was going through what I am/did go through after all:-) A bigger church family and less rare syndrome would have allowed more possible families with at least partly similar dynamics, but as it is/was, there are simply not many with the combination and numbers of handicaps as Aaron…..that’s ok though….Time and prayer has healed so much my human flaws of perception. It’s a daily, sometimes hourly journey, huh:-)) Bless you and your sweet family…….

    ~Kris Falwell White~
    Regina sister, Harding Grad 1992

  15. ann baur permalink
    April 9, 2012

    Kamy – Thank you for sharing your heart in such a powerful and encouraging way. I was blessed to share a big chunk of your life and know for sure that Megan and Morgan have taught me more about God than I ever learned in a classroom. But then so did watching you mother them. Miss you and love you always!

  16. Jad smith permalink
    April 11, 2012

    Wow! Im so sorry Ive been one of those people who have moved out of your way…Ive seen you in action and honestly not everyone can do what you do!

  17. Kevin Boggs permalink
    April 14, 2012

    What an Inspiration You and Kevin are to Us. God allowed our pathways to cross and Our lives will never be the same again! When my life seems to be going haywire, I stop and think just how hectic your lives are daily and hang my head in shame. You never complain, Your Eyes are focused oh Jesus, and it shows in every action! Not only to hear your Testimony, but to be a witness to it! Everyone who knows You and Kevin and your girls are giving a wonderful Gift, Pure Unconditional Love. Great article and Love the photo of you all. From Our House to Your House, We Thank You for the opportunity of being apart of your Wonderful Family! Kevin and Nancy Boggs

  18. Rhoni Standefer permalink
    July 2, 2012

    Kamy, it was great having you in my class today at Lipscomb. Thank you for telling me about your blog at this site. So inspiring! May you continue to be blessed on this special journey. Please keep in touch! Sincerely, Rhoni Standefer (Joni and Friends Knoxville)

  19. Tracey Turner Dannels permalink
    January 18, 2013

    Dearest Kamy, When I saw your postings about Megan being in the hospital, I didn’t know who Megan was (we have been out of touch way too long!) so I went to your Facebook page, and started reading, and reading, going back, finding out she is your daughter, she is 17, and found this article which told me more about her and your family. I am praying she will recover from her pneumonia, and for your family during this difficult time. I can see life is always difficult but right now is especially trying. You are an incredible woman, with incredible faith and strength. I know God is working through the life of your family to be a shining example to others, just as He did with Megan Cope in the life of Mike and Diane and family. Thanks for sharing your struggles and challenges and victories. It helps all of us to be more in tune to families like yours. I love you! May God bless you each and every day! Tracey (Turner) Dannels HU 1985-90

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