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Tuesday, January 29, 2013

7 Lessons From The Community of Disability

The tragedy of disability is not disability itself, but the isolation it often creates. This was one of the most important lessons our family had to learn. Sadly, we learned it the hard way. But hard lessons often lead to great insights and over the past few years we have had the wonderful opportunity to gain great wisdom from several families in many different communities.


While there are still many discoveries to be made along this journey, here are at least 7 helpful insights gleaned from the community of disability that have made a powerful difference in our family.


1. God is both sovereign and good.

When you are given a child with a severe disability, it is essential that you see God’s sovereign hand at work in your family. Scripture declares that your child was not an accident or a tragedy, but wonderfully and purposefully knit together from a blueprint of God’s plan that was designed before the foundation of the earth. (Psalm 139:13-17; Ephesians 1:3-12). Disability is not a curse; it is the goodness and grace of God magnified in ways that many typical families never get to experience.

2. You have been brought into this community for a purpose.

I was very slow to realized the purpose and potential of our family’s suffering and hardship until I began sharing our experiences. 2 Corinthians 1:3-7 came alive during that time. Suffering brings us into the intimate presence of God where the sweetest comfort occurs. But we are not comforted to become comfortable; we are comforted to become comforters. Every single episode in our family’s experience with disability was an equipping of God’s grace to be shared with those in desperate need of His comfort.

3. Disability magnifies our vision for joy in the smallest things.

Most families living with disability will testify that some of their greatest victories have been those moments typical families often take for granted. I remember the first time our son used the bathroom in a public restroom (at the age of 17). We had just walked into Walmart and Jake took me by the hand and led me to the men’s room. He pulled his pants down and tried to pee in the toilet. He missed the toilet completely, peeing all over the seat, the floor, the wall and the stall. But he didn’t pee in his pants! We were laughing, clapping, cheering and praising God in a urine covered stall of a Walmart restroom. Most people cannot comprehend the enormous victory of that day, but disability often gives us 20/20 vision to see the things that others seem to miss. This is a wonderful gift.

4. Community brings much needed perspective

As said before, the danger of disability is isolation. The danger of isolation is idolatry (yes, our disabled children can become idols). The blessing of community is perspective. We all need perspective to wake us from the potential of self-pity and self-centeredness.

Just when you think no one on earth could possibly have it more difficult than your family, you meet a single mother with severely autistic twin boys. And just when the single mother thinks she can’t go on, she meets a grandmother trying to raise a 10 year old girl with fetal alcohol syndrome. The grandmother watches as a young couple attempt to nourish their unresponsive child through a feeding tube between seizure episodes. These families are learning something extremely valuable from each other--perspective turns our inward focus to outward community. And within community, disability become ministry.

5. Outspoken men are often minorities.

While this is not always the case, oftentimes when it comes to family leadership, women seem to be the most outspoken advocates for their disabled children. A mother’s tenacity may seem like the most natural response to a child’s disability ("Mama Bear" is not one to be messed with), but when this tenacity stems from a father’s detachment or disillusionment, it can create a lopsided weakness in the family structure. A family living with disability needs a father of certain dependability. This dependability is often best cultivated and strengthened through other masculine men in the community of disability.

6. When marriage takes second place to disability, it ends up in last place.

It has often been said, “The best way to love your children is to love your spouse.” While very few couples would admit to neglecting this truth in principle, many neglect it in practice. Good intention, without deliberate application, leads to marital deterioration. The relentless care of a disabled child, added to the care of other typically developing children in the home, added to working overtime to pay medical and therapy bills, added to stress and depression and weariness, leaves little time for marriage maintenance. A marriage that is not properly maintained is like a car leaking motor oil. Sooner or later the cylinders will seize, the engine will blow, and the damage will be beyond repair.

Do whatever it takes to make space in your busy schedule for quality time alone with your spouse. Men, don’t wait for your wife to seek this; lead the way. It could be as detailed as planning respite care and adding a date night every other week, or as simple as ending every evening sitting on the couch laughing (or crying) about the day's events. Aside from daily intimate time with the Lord and His word, this will be the single most important thing you can do to protect your family from becoming the alternative sad statistic.

7. A child with a disabled sibling is anything but typical.

I have borrowed (and adopted) the term “typically developing child” from my good friend John Knight. It is clear and accurate language in the proper context. But the more time I spend with siblings in families touched by disability, the more I realize these kids are anything but typical (per se).

I have watched in awe as siblings have stepped into difficult situations rivaling the heroic status of soldiers, firefighters and police officers. I have seen awkward, backward teenagers discover their extraordinary gift and calling as compassionate caregivers. And many times when I began to feel pity towards one of these typical siblings I have felt the faint nudge of the Lord scold me with, “Pay attention, I’m doing something incredible in the life of this child as I conform them into the image of my Son.”

No school, public or private, can teach the deep lessons of life like the school of disability. I can say without hesitation that my sons will be better men because of their relationship with their disabled brother. Living with Jake has not only prepared them for the worst of trials, it has equipped them with a profound sensitivity to recognize the intentional hand of God in the smallest, most unsuspecting, details of life.

What an extraordinary gift their brother has been!

These lessons are not even close to being exhaustive. They are ongoing and ever developing all around us. The desperate search and refreshing discovery of each nugget of wisdom brings strength to our family and equips us to be poured out into the lives of others.

If you are reading this and happen to be new to the community of disability, welcome to the family! It is a wonderful, glorious, breathtaking journey that will open your eyes to the most precious things in life as it draws you closer and closer to the most precious truth for eternity.











19 comments:

  1. Greg,
    Your whole post is just excellent, but your first point brought to mind this old hymn by Samuel Medly. I think it was first found in the Gadsby Hymnal.


    1 God shall alone the refuge be,
    And comfort of my mind;
    Too wise to be mistaken, He,
    Too good to be unkind.

    2 In all his holy, sovereign will,
    He is, I daily find,
    Too wise to be mistaken, still
    Too good to be unkind.

    3 When I the tempter’s rage endure,
    ’Tis God supports my mind;
    Too wise to be mistaken, sure,
    Too good to be unkind.

    4 When sore afflictions on me lie,
    He is (though I am blind)
    Too wise to be mistaken, yea,
    Too good to be unkind.

    5 What though I can’t his goings see,
    Nor all his footsteps find?
    Too wise to be mistaken, He,
    Too good to be unkind.

    6 Hereafter he will make me know,
    And I shall surely find,
    He was too wise to err, and O,
    Too good to be unkind.

    Thanks for articulating these things, brother.

    With love from Canada!

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    1. Thank you Pastor! I cherish your encouragement.

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  2. I always read your posts carefully for I know the lessons your family has learned are vitally beneficial in my own circumstances. Hubby and I are "elderly", and dealing with heavy-duty issues of old age. Through it all we trust God's sovereignty in all things, including all our ailments. We know that He purposes all things for our good. It is encouraging to us to be reminded of that and to rejoice daily that we are safe in His hands. Always and forever.

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  3. My son might have developmental health issues. As we prepare to have him checked, you've comforted me.

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  4. These words have so comforted us as we, 60 something year old parents, wrestle about whether to put our 16 year old adopted daughter who is totally deaf and intellectually disabled into a group home for intellectually disabled children! Our Abba Father God brought her to us -- we thought we were adopting a daughter who was totally deaf and we would learn ASL together and teach her God's Word -- the Gospel for her to take to the deaf peoples -- we did not know she would be intellectually disabled with chronic active Hep B, too. In His Sovereignty though He knew and trusting Him has been much more of a challenge than we ever thought it would be -- yes we never thought that it would be. The factors of us parents being older, with health issues of our own, along with the horrendous isolation/therefore depression -- yes, with very little support -- no respite is wearing us down so and makes this wrestling more intense!!! Please pray for us and these decisions we are wrestling with to make!! Thank you so much for your encouraging words!!

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  5. I have a sister 8 years older than I am with mental, emotional and physical disabilites. She is almost 60 and I am 51. How beautiful your post was and how incredibly encouraging. My daughter is reading your book and loving it. Thank you for pointing us to God.

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  6. Greg,

    Thanks for your wisdom! Having raised a disabled son (he's now 21), I have to say I have not read a more relate-able article on the topic- you hit the greatest challenges and joys spot on, and I'll definitely be sharing it with others.
    Regarding your insights on the temptation toward idolatry found in isolation, I found this to be an applicable warning for anyone child-rearing, the love for our kids is so powerful. I found this was a struggle too while homeschooling,the tension between the "sanctuary" of home life and integration within a community. In fact, believers in general could heed the reminder in an age of technology that finds many of us sitting behind screens, wondering why we're so lonely.


    Another vital point in your article for me, was that "we are not comforted to be comfortable...but to become comforters", to move outwards and connect with others to whom the shared experience can strengthen and encourage.

    I am ashamed to say that my marriage ended up "the alternative sad statistic". Failing to see many of these perspectives while we were in the midst of it all, it just disintegrated slowly over time from neglect. Ironically, our disabled son is the strongest link between us now and the most loving supporter and friend to both his parents. His heart is so grateful, kind, and merciful.

    Thanks again for sharing your story.

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  7. Hi Greg! Thanks again for a grace-filled post. Our kids allow us to focus eternally, looking beyond their brokenness and our own, which we can easily mask as we struggle between two worlds.

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  8. "But we are not comforted to become comfortable; we are comforted to become comforters."

    Oh, so beautifully said. Amen.

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  9. A friend sent me a link to your blog. This post brought me to tears. It expresses so many of the feelings that my husband and I have raising our daughter with multiple special needs. Thanks for your words and for sharing your story.

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  10. Brother,

    While my life is not directly affected by anyone with disability, I am constantly attempting to be mindful of the possibility that someone nearby is feeling and being isolated due to a disability. I often bring up the topic with my wife (married 7 months), suggesting that if the Lord would give us children with disability, we would be blessed.

    I wonder if someday not too long from now, we would be blessed to adopt a disabled child?

    God, please bless my wife and me and our church family with the heart and soul and resources to enclose the disabled and their families in the welcoming, accepting arms of Christ within our community of "ability"... amen.

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  11. Thank you for this article! I am the husband in the example you gave of "a young couple attempt to nourish their unresponsive child through a feeding tube between seizure episodes." My son is 10 months old, and I read your article in his hospital room during another multiple-night admission.

    There is a constant fight when faced with the pain of watching my child suffer: Will I become bitter (leading to isolation from God and others) or will I be broken (experiencing the comfort of God and mutual care with others)?

    Thank you for the practical advice you've given about how to hold fast to the goodness of God as his mysterious ways conform us to the image of Jesus.

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  12. Love this! I will be sharing this on my blog (giving credit to you of course).

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  13. Hi Greg

    I read your book. Thank you for sharing your journey with your son.

    A friend told me about your blog. I absolutely agree with your points here, there's so much truth in it. And most of all, I appreciate a man, a dad voicing all these. Thank you.

    I think, we over here in Singapore have a lot to learn from you.

    Your constant communion with the Lord amidst your struggles is a reminder for me that God is ALWAYS good. It will encourage me as I homeschool my 3 children, my youngest has DS, to keep running to God for ALL things.

    Here's sharing my blog with you icandoitmama.wordpress.com

    Many blessings for you and your family as you serve Him where you are.

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  14. Thanks for sharing your heart your struggle your son and the insight the Lord has given you! So true brings tears to my eyes! My son is bipolar, older now but it has been a long hard road one that has led me staight into the arms of the Lord!! One of the best moments; happiest day of my life was when we had a picnic and chatted and laughed together. It was a special day for both of us; a little thing but in the midst of choas the best!

    Your post will be a great encouragement to many of us who only share with some with those we know and who would understand. It's really beautiful and thank you for bringing me into to this special family!

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  15. I was a missionary for 30 years living in trying situations and facing constant challenges. I thought I knew alot. Now I am caring for my aged mother; and even if she is not disable, her limitations, physicall and mental are many. Thank you for givig me some insight in the life of disable families. The Lord never leaves us in a space too small to grow in.

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  16. Hi there, awesome site. I thought the topics you posted on were very interesting. I tried to add your RSS to my feed reader and it a few. take a look at it, hopefully I can add you and follow.



















    Disability NEWS

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  17. Thank you for this. It is beautiful and true.

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  18. I enjoy your insight into the isolation of disability being the true tragedy of disability, and reminder of the joys it brings. Thank-you for sharing.

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