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A life filled with special needs

I’d like to tell you about maybe the hardest thing in my life. But it’s nothing compared with how hard it is for her. She was born with a shortened chromosome that has left her with a number of “special needs.” Articulation is difficult. Mental processing can be slow. There’s epilepsy. Things tha…
By Seth Barnes
By Seth Barnes
I’d like to tell you about maybe the hardest thing in my life. But it’s nothing compared with how hard it is for her. She was born with a shortened chromosome that has left her with a number of “special needs.” Articulation is difficult. Mental processing can be slow. There’s epilepsy. Things that come naturally for you and me are a struggle for her.
We’ve prayed. We’ve cried. We’ve gone to people with healing ministries. We’ve driven home, re-visiting again why we believe in a good God, a God who is sovereign, a God who loves us.
Karen has worked so hard with her. She’s home schooled her, gone to doctors, talked to consultants, and spent countless hours going over the basics of life. There have been numerous surgeries. There are medicines. We’ve tried to “mainstream” her in public school.
We’ve sent her to be a part of our ministry’s work crew in Mexico twice. The first time was so hard for her. I can’t tell you what it felt like to talk to the work crew leader (a hero if ever there was one) about how her issues were distracting the rest of the team.
But now at 21, she has just one more year of school and then she’s got to make it out there in the cruel world. We’re hoping for a group home, but there are no obvious choices. All we can do is trust in God that something will show up.
This evening it occurred to me that, as bad as things can seem for her, there are always those for whom things are worse. The pain in her life may be unbearable sometimes, but she has friends who can’t walk, who can barely talk, who look odd, or who live their whole lives feeling like a big mistake.
The world of special needs is tough. If coping with your handicap isn’t enough, there’s the internal battle you fight of not feeling normal. This isn’t angst or insecurity; this is an issue of a world that feels fundamentally messed up – so dark that loneliness is the only constant.
Generally we’re doing pretty good here in the Barnes house. You’d never guess at the stuff we wrestle with. We’re determined not to be victims and not to live as though our problems are any worse than anyone else’s. We don’t ask for sympathy; we know we are blessed in so many ways and we have learned the grace of saying “thank you” for those things that force us to depend on God and to stay humble.
And on those rare occasions when it seems like she can’t go on, when the unfairness of it all is overwhelming, we have two sources of consolation. God has blessed us with a family – seven of us who love no matter what. And, rather than fight him, we have learned the habit of seeking the God who made us, all of us imperfect.
We’ve learned not to ask “why?” Instead, we go to the tree of life and worship.  We trust the “why?” question will get answered soon enough, if it’s important. While cynicism is always a temptation, we’ve found solace in the presence of a God who loves those whose needs he considers particularly special.

Comments (25)

  • I do not know you and I am still humbled, honored, and touched to read your words. Your family is amazing and strong, beatuiful, and loving. Life isn’t worth living without the trials we face. A faith that can’t be tested can’t be trusted. You humble me with your devotion and sincerity. Merry Christmas from south Georgia.

  • i read this and i have no defense. the whining and complaining i do… it’s utter nonsense in the face of what so many deal with, and do so with such grace, dignity and determination. thanks, seth for reminding me just how good i have it and to stop taking it for granted!

    hope you and your family have an awesome christmas!

  • You have such a beautiful family! We have learned so much from you Seth, especially about embracing God and God’s will and believing in His goodness. Thank you for sharing your lives with us!

  • **mArC** The Schifano Tribe

    Thanks for sharing your heart and the hard stuff in your life. It’s an honor to know you guys.

  • My little brother is special needs and he is taught me and my family about patience. His love and innocence for life is contagions! I’m so thankful for him! I see him in two days and he can’t stop raving about it!

  • Jesus just so delights in each of you guys. And I think He especially delights in you delighting over one another!

  • Hey Seth…this was touching in large measure because I’ve stayed in your home and have experienced some of the days and nights of your life. I love your family and the patient ways the Barnes tribe embraces hard things. And I can’t tell you how touching it has been to sit with your daughter and talk or how much it meant to me when she said…”You know how to clean a kitchen and garage and should come live here!” 🙂 One of the great joys I feel this Christmas is the fact God allowed our lives to intersect. Much love from the mountains…Me.

  • In truth we are all special needs kids.We,with Leah are blessed to know the provider for those needs JeSUS.


  • Don’t know how I found you on this world wide web, but I read your blogs on a regular basis. Thanks for doing what God has called you to do. Your words, life, experiences of others and your family helps each of us to grow in ways we never thought able. Have a blessed Christmas.

  • You’ve got a very special family in so many ways. Each one of you has been a blessing to many in countless ways. I praise God for all of you, and that each one of you is a walking testimony of His glory.

    You have sought His kingdom above all else, and you have done well in bringing your children into His family. He will take care of the rest, as He promises. Her life may look a little different, but she is no less blessed and she is no less a blessing.

  • We definitely find ourselves living in a world of paradoxes at times- and yes, trusting not only in Him, but in His absolute goodness is the path of life through difficult terrain. Y’all are doing it with grace and faith- and it testifies of Him.

  • I have two things to say:
    I’m pretty sure I can guess at the things you wrestle with in the Barnes’ household…because you and Karen, my friend, are on the front-lines!
    And, second:
    You are all so beautiful I just want to give you a big, bear hug!

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Seth Barnes

I'm motivated to join God in his global reclamation project. He's on the move, setting his sons and daughters free from their places of captivity. And he's partnering with those of us who have been freed to go and free others.

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