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Setting an example to the believers from her youth

Posted in commentary, Scripture on August 3, 2010| 6 Comments »

Let no one despise you for your youth, but set the believers an example in speech, in conduct, in love, in faith, in purity. 1 Timothy 4:12

God is raising up a number of young people at Bethlehem who set an example for the adult believers in how to serve in love on this issue of disability.

I happen to live with one of them.  And it is her birthday today.

Hannah, it is a joy to watch how you love your older brother so freely.  I already see evidence that God is making you into a woman with steel in your spine – just like your mom, and so many of the other moms we know also raising boys and girls with disabilities.

I love you very much.  Dad

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How do we help people talk to us about disability in life-giving ways?

Posted in commentary, Helpful things on August 1, 2010| 2 Comments »

In response to yesterday’s post, Elisabeth asked the question, “how (do) you help people know how to talk to you about disability in a way that is helpful and life-giving.”

That’s a huge question!

Three things immediately came to mind.  I’m hoping more of you will add to this conversation:

1) I remember who I am in Christ, both what I have been saved from and who I am today in him.

Hurtful comments usually come out of ignorance rather than malice, in my experience.  When I remember what a slave I am to sin except for the work of God in my life, I am less likely to attach bad motives to simple ignorance.  I certainly get tired of ignorant comments, so I am not suggesting that is easy.  Yet, even those comments that are meant to hurt are nothing like my own offense against God.

When I am most disciplined about being in the Bible, remembering the horrible reality of my own sin and the incredible, transformative power of Jesus Christ, I am more likely to ask God for help in replying to hurtful comments.

And he has helped me, time and again, to respond with grace, ‘seasoned with salt’ (Colossians 4:6).  Even times I’ve felt like I’ve fumbled around, battling my own desire to attack rather than educate, people have said they were helped by something I said.  Those moments are certainly providing examples of God’s sovereign goodness in helping!

My continuing problem seems to be that when I anticipate a situation might be hard, I am more likely to be in prayer about it.  But when I become complacent, comments from out-of-the-blue leave me ready to respond quickly and rashly.  Then I have to back up, apologize, and start over.

But in every instance, even when people want to know things so they can serve us and love us, we must make ourselves vulnerable, letting people into our lives in ways we might otherwise not choose but for this circumstance of disability in our families.  In Christ, that vulnerability is actually a strength – our God has already called us from death to life, what can man do to us?

So, how to help people on this subject?  Ask God for help, then walk in faith.

2) Being part of a community who knows and loves me and my family.

Long-term, Christ-exalting relationships are incredibly helpful.  First, over time these people who are already oriented toward loving me with a Christ-like love come to know things that are helpful.  They naturally fall into patterns that leave exchanges, even on difficult topics, much easier.  They are safe.  In the context of such relationships, the person who slips up has a deep well of good-will on which to draw.

And the Holy Spirit helps here as well.  I remember back in 1996 some of the more elderly members of Bethlehem were seeking us out.  I remember one exchange where a dear older saint used terms for disability that even in 1996 were considered not just old-fashioned, but offensive.  The Holy Spirit did not allow those words to become the focus (which was a gift; I certainly was not yet asking God for help then like I do today!), but rather he let me feel the outpouring of affection for me and for my wife and little boy.  Her heart was rightly oriented toward us, and God let me see that heart.

Out of these safe places to talk about hard things, I also see what lands on people as helpful verses frightening, divisive, bitter or defensive.  I have different responses for children vs. adults, academic settings vs. family settings, formal vs. informal, etc.  15 years has given me a lot of experience!

3) Out of this community, God creates ambassadors who go out ahead of me.

I know there is a great deal I do not deal with any longer because others have already done so on my behalf.

That’s a quick, top-of-mind response. I may have more later as I think on it.

How would you respond to Elisabeth’s question?  What have you found to be helpful in helping others talk with you about disability?

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Hurtful words and killing sin

Posted in commentary, News, Scripture on July 31, 2010| 2 Comments »

Justin Taylor pointed to a heart-breakingly real statement on miscarriage yesterday: Unwanted Counsel during Times of Grief.  I recommend it.

Unwanted counsel is another thing those of us dealing with disability live with.

I learned recently that a distant family member has been quietly questioning our parenting of Paul – that if only we had done things differently during his earlier years, he would have had a different outcome in behavior today.

After 15 years, such ‘observations’ are just so ridiculous that my first response was laughter.  We’re not perfect parents by any means, but where he lands on the autism spectrum means certain things just won’t ever be possible for him, even if we had done things perfectly.

But feeling like I can ‘handle’ such comments, that they don’t affect me anymore, also meant I didn’t come to the cross and lay it before Jesus.  I might have laughed, but it was certainly not with joy.

Over the next days I let myself feed bitterness, but just around the edges.  A self-righteous comparison would come, and rather than kill it, I would just let it be.  Then another thought would come.  The bitterness grew, and a seed of anger was planted beside it.

Dragging such thoughts into the light is good for me; it encourages me to kill the sin feeding those evil thoughts.

We need to help people know how to talk to us about disability in ways that are helpful and life-giving, for them and for ourselves.  That isn’t easy for me because it means I have to actually do something for their benefit rather than stew in my own hurt.

People will think foolish, hurtful thoughts.  Some of those people will make it worse by actually saying foolish, hurtful things.  The wounds can go very deep, right to the core.

And, thankfully, Jesus remains the answer to every sin, and to our being reconciled with each other:

But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus his Son cleanses us from all sin. If we say we have no sin, we deceive ourselves, and the truth is not in us. If we confess our sins, he is faithful and just to forgive us our sins and to cleanse us from all unrighteousness. 1 John 1:7-9

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Mercy, Now, as Root and Core – a blessing from the heart and mind of Jason Harms

Posted in commentary on July 26, 2010| Leave a Comment »

Jason Harms is an exceptional musician, a frequent visitor to Desiring God, a writer, and a friend of mine.  He soon leaves for a short-term mission trip to Romania.

Yesterday in church, our first back in a couple of weeks, his trio led worship during the offertory with Mercy, Now, as Root and Core.

I was reduced to tears during the second stanza:

“Oh cursed wind!” I’d first proclaim,
Not knowing wind to bear the name
Of pilot, navigator, guide,
Each title acc’rately applied
While beaching me on humbled shore
Where self is less and Christ is more.

I was one who pronounced ‘oh cursed wind!’ when disability entered my family.  But it was exactly as Jason sang: the guide to reveal to me Jesus as he really is.

Jason writes from experience.  He and his wife have suffered loss.  And he wrote beautifully about God’s sovereignty in that as well.

Thank you, Lord, for giving such gifts to men as Jason who love you and want to make much of you!

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Repost: Happy Mother’s Day – May You Rejoice in all Circumstances

Posted in commentary on July 25, 2010| 1 Comment »

Obviously today is not Mother’s Day!  But I’m very happy God gives me the opportunity to honor my wife and my mother on other days as well.  This post from May 10, 2009 WAS on Mother’s Day.

Happy Mother’s Day – May You Rejoice in all Circumstances:

As I read Pastor John’s blog for Mother’s Day, it was bittersweet.  It isn’t because I’m a mom – I’m obviously not.  It isn’t because my mother was a ‘bad’ mother – she is a wonderful mother and grandmother and I praise God for her.

And my wife excels at raising our children.  I have been deeply blessed by God to parent our four children with her, particularly given all that cancer has robbed from her – the fatigue and pain are terrible at times for her. Yet she perseveres for the sake of her children and me and we have a pretty happy home.

No, it was bittersweet as I read this line in Pastor John’s blog:

As sons and daughters—whether old or young—let’s remember that the deep satisfaction that comes from honoring all the truth that our mothers taught us also comes back to them as a crown of joy and honor and blessing in their later years.

Our oldest boy will never fully comprehend the truth that his mother understands and lives and loves.  He will always be an infant in how he comprehends the world.  From that sense, he will never honor all the truth that he has been taught, because he can’t.But, thank you, God, that is not the end of the story!

Behold, children are a heritage from the Lord, the fruit of the womb a reward. Psalm 127:3

Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. Psalm 139:16

But our citizenship is in heaven, and from it we await a Savior, the Lord Jesus Christ, who will transform our lowly body to be like his glorious body, by the power that enables him even to subject all things to himself. Philippians 3:20-21

All children are a heritage from the Lord!  We know that, because he said so, and because he knew how HE WOULD FORM THEM!  Paul’s disabilities are intentionally given to him for God’s glory and for my good.  And someday Paul’s little body, full of ‘problems’ that make him different, will be transformed.
Thank you, Pastor John, for helping me see this.  And thank you, Lord, for my wife.  Please help me honor her as the mother of our children, today especially.

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Repost: More than a conqueror?

Posted in commentary, Scripture on July 24, 2010| Leave a Comment »

A reposting from March 17, 2009:

Frequently I hear from parents what I have also experienced – that our children with disabilities bring qualities and a sweetness into our lives that we would have never received but for their disabilities.  And frequently our children’s disabilities, and the extraordinary difficulties of parenting a child who is different in this culture, are the very means by which God demonstrates his power and mercy in our lives.  The promises of God become very precious.

But do we believe every promise is for our children with disabilities, particularly for those children with disabilities that make them very vulnerable and weak?

Consider this familiar passage from Romans 8:35-39.

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written,

“For your sake we are being killed all the day long;
we are regarded as sheep to be slaughtered.”

No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

I love the not-being-separated part, for myself and for my son.  I understand about being slaughtered for God’s sake.  I love the ‘for I am sure’ part as well.  But ‘more than a conqueror’?  How can that be for my very small, vulnerable, blind son with autism?

Pastor John answers it for me in Don’t Waste Your Life (pp 96-97):

One biblical answer is that a conqueror defeats his enemy, but one who is more than a conqueror subjugates his enemy. A conqueror nullifies the purpose of his enemy; one who is more than a conqueror makes the enemy serve his own purposes. A conqueror strikes down his foe; one who is more than a conqueror makes his foe his slave.

Practically what does this mean? Let’s use Paul’s own words in 2 Corinthians 4:17: “This slight momentary affliction is preparing [effecting, or working, or bringing about] for us an eternal weight of glory beyond all comparison.” Here we could say that “affliction” is one of the attacking enemies. What has happened in Paul’s conflict with it? It has certainly not separated him from the love of Christ. But even more, it has been taken captive, so to speak. It has been enslaved and made to serve Paul’s everlasting joy. “Affliction,” the former enemy, is now working for Paul. It is preparing for Paul “an eternal weight of glory.” His enemy is now his slave. He has not only conquered his enemy. He has more than conquered him.

So, my son, who’s days AND disabilities were planned for and implemented by my good and righteous God (Psalm 139:16 Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.) for his glory – that son has already demonstrated he is more than a conqueror.  His disability, the very thing the enemy was using to shipwreck my faith, was the means God used and uses today to bring me to the cross.

Yes, Lord, I believe my boy is more than a conqueror through Jesus.  And this sweet, hard-to-hear song in this video takes on a new significance in light of that reality.  I imagine heaven rejoices and demons quake when this little boy sings about being in the Lord’s army.

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Repost: New book by the brother of a man with autism

Posted in Book Commentary, commentary on July 23, 2010| Leave a Comment »

Noel Piper was the inspiration for this blog posting from May 21, 2009.  She pointed me to the interview and the rest came after that.  A year later, I’m grateful to see how God has increased my non-disabled children’s understanding of disability and their role in serving Paul.  A lot has changed in that year, but I think my observations about our family remain the same.

New Book by the brother of a man with autism:

Karl Taro Greenfeld has written a book about his growing up with a brother with autism.  Noel Piper shared this link to an article and interview with Mr. Greenfield.

This was a hard article to read and an even harder interview to listen to.  Mr. Greenfield does not have anything positive to say about growing up with his brother.  For example:

While he acknowledges that growing up with his brother taught him a certain amount of compassion and selflessness, Greenfeld notes that these lessons were forced upon him — not taken up by choice.

“If you’re hit by a car, you learn to be afraid of cars,” he says. “It’s hard for me to say, ‘I’m learning so much from this and that makes it OK,’ because I look at Noah and it’s not OK.”

The comments are also telling – mixing messages of how courageous Mr. Greenfield is in honestly writing about his experiences with his brother to those who call him selfish and self-pitying, without compassion for his brother or his parents.

Mr. Greenfield is certainly correct that disability changes the order of things in a family.  Most families that experience severe disability simply must spend more time caring for the child with the disability than the other children, and behavioral disabilities tend to ramp that up even more.  Our son’s autism takes up far more time than his blindness.  Typically-developing blind teenagers are just that – pretty typical in how they behave and how independent they are compared to other young people.  Paul is not typical, and it is his autism that causes the greatest deviance from what is considered normal.

As a father, this was a gut-check for me.  The bitterness I heard in Mr. Greenfield’s descriptions about his growing up, and his sense that there is no good purpose in his brother’s disability made me look (again) at my own parenting.  Does disability and disease dominate our home?

In a word, yes. Everything is slower in our house because of Paul – he needs help eating, dressing and personal care.  Just this week we had to go to a Childrens Hospital to get his teeth cleaned because he must be under general anesthesia. And because of his very small stature he’s had several teeth, including adult teeth, pulled.  That requires several hours of my time and focused attention on Paul.  For my other kids, we walk up the street to a local dentist – usually home within an hour.  And their teeth just fall out like ‘normal’ kids.  Lots of people know them as ‘Paul’s brother’ or ‘Paul’s sister’ because he is so memorable.

But I believe there is something different in our household than in Mr. Greenfield’s household or many of the commenters to the NPR article, even from the short description I read and the interview I heard:

1) We know, and are teaching our children, that God is sovereign over all things, including their brother’s disability and their mother’s cancer.  And we know that God is good and just in all his ways and all his works.  God intentionally made Paul just the way he is, for God’s glory.  Exodus 4 and Psalm 139 are pretty clear about that.  It is a great comfort to know there is purpose and power behind everything.

2) The Doctrine of Sin has been very helpful – we know we deserve much worse than raising a child with a disability. And God used Paul to break me of my sinful pride and show me how beautiful and glorious and powerful Jesus is!  That is a pretty great gift to receive through your own child!

3)  God will help us and God does help us.  Philippians 4:19 is a promise I hang on to at home, at church and in my work: And my God will supply every need of yours according to his riches in glory in Christ Jesus.

4) We are not ashamed to speak openly about Paul and his many issues.  We do not speak in hushed tones around the dinner table.  The children have learned they can speak openly about disability.  Paul’s school is very helpful here – they have the best ‘Fun Fest’ around, which is a highlight of our spring.  Paul’s ‘normal’ siblings have a great time, because of their brother’s disabilities. Hannah again invited a friend to come with her – unashamed to be connected to her brother or to be with dozens of other children with severe disabilities.  Joni Camp has also been a great thing for the children.

5) We spend a lot of time with our other children and try to find things each of them are interested in doing.  Tonight is the school play, and I have been to several practices.  On Tuesday a tearful child remembered a school project was due the next day – and we stayed up a little later to work on it together.  We’ve read two of the three Lord of the Rings trilogy together, and watched the first two movies together.

6) We fail a lot – which forces us back to God for his help, asking him to protect our children’s hearts. That is where my hope lies, with God. I do not trust my experiences nor do I trust that I can ultimately lead my children to love and protect their brother.  But God can.  And when I see my daughter making sure Paul is included, or when my 8-year-old son helps Paul find something without prompting, I think God is offering glimpses to me of what the future might look like.

Not normal.  Better.

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Repost: Matthew Henry Commentary on Matthew 12:15

Posted in commentary, Scripture on July 22, 2010| 5 Comments »

A reposting from January 20, 2009:

He healed them all!  That’s what Matthew says about Jesus.  While people were preparing to destroy him, Jesus healed everyone who was following him. 

Matthew 12:14-15 But the Pharisees went out and conspired against him, how to destroy him. Jesus, aware of this, withdrew from there. And many followed him, and he healed them all. . .  

I deeply appreciate Matthew Henry’s commentary on the bible, which can be found online for free.  I have used it for several years, less as a commentary and more as a devotional.  I find his words encouraging and beautiful on this passage from Matthew: 

When the Pharisees, the great dons and doctors of the nation, drove Christ from then, and forced him to withdraw himself, yet the common people crowded after him; great multitudes followed him and found him out. This some would turn to his reproach, and call him the ring-leader of the mob; but it was really his honour, that all who were unbiased and unprejudiced, and not blinded by the pomp of the world, were so hearty, so zealous for him, that they would follow him whithersoever he went, and whatever hazards they ran with him; as it was also the honour of his grace, that the poor were evangelized; that when they received him, he received them and healed them all. (emphasis mine).  Christ came into the world to be a Physician-general, as the sun to the lower world, with healing under his wings. Though the Pharisees persecuted Christ for doing good, yet he went on in it, and did not let the people fare the worse for the wickedness of their rulers. Note, Though some are unkind to us, we must not on that account be unkind to others. 

May all of us be described as hearty and zealous for Jesus!  All will be received who trust in this Physician-general! 

You can read his entire commentary on Matthew 12 here. 

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Repost: Persevere to the end, like Ella

Posted in commentary on July 20, 2010| 1 Comment »

This was one of my favorite posts to write, because my Great-Aunt Ella was an incredible woman.  She passed from this life some years ago, but her example as a believer in Jesus and as a mother of a severely disabled daughter remains with me today.  There was no one like her, and if you haven’t been introduced before, I think you will enjoy meeting her.

And be sure to read the comment from my sister for a little more insight.

Persevere to the end, like Ella from May 28, 2009.

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Repost: The Bible is Powerful

Posted in Book Commentary, commentary, Scripture on July 19, 2010| Leave a Comment »

I laughed out loud at myself when I ran across the first sentence to this post.  It seems I have been comparing and contrasting things from the beginning of my writing for the blog.

This was written and first published on the old disability ministry blog site on October 6, 2008.  It looked so awful there that I’m posting it in its entirety here:

I was reading two different articles recently, and found the contrast between them to be startling.

The first was by a mother of a child with Down Syndrome, and her desire to understand it from a biblical perspective:

(You can read the whole article here: God, do you care)

Here’s the situation. Moses is at the burning bush. God wants him to go to Pharaoh, and Moses begins making excuses. “Then Moses said to the Lord, “Please, Lord, I have never been eloquent, neither recently, nor in time past, nor since Thou hast spoken to Thy servant; for I am slow of speech and slow of tongue.” And the Lord said to him, “Who has made man’s mouth? Or who makes him dumb or deaf, or seeing or blind? Is it not I, the Lord? Now then go, and I, even I, will be with your mouth, and teach you what you are to say.” Exodus 4:10-12

Here the Lord is taking responsibility for a “disability.” And He claimed to have made it that way on purpose! (emphasis mine) My Mary was not a genetic “accident.” She was designed that way by God. But the real exciting thing is that God doesn’t see dumbness, or blindness or deafness as a disability at all. He couldn’t see any reason that Moses’ speech impediment should stop him. God promised to not only be with him, but to teach his mouth what to say. Moses’ success in life did not depend on his own skills, but on the God who would be with him.

Now contrast the above with a more scholarly look at disability and theology:

(You can read the entire article, a book review of The Disabled God, here: Theology Today )

Any given event or series of events in the world – a Beethoven symphony; the overthrow of long-established repressive governments in eastern Europe; the church bus crash in Carrollton County, Kentucky, killing thirty-seven children; the governmentally-sanctioned disappearance, torture, and killing of hundreds of Argentinean citizens during the 1970s; the birth of “crack” babies and babies born with AIDS or other horrible maladies-is seen not as lying under or within God’s controlling power and will, but as emerging from a multiplicity of factors. God is one determining factor, even a necessary determining factor, but not the controlling, determining factor. (emphasis mine)

There is a world because there is God, but every event in that world arises out of the mutually creative activities of God and the creatures. In this sense, though strictly in this sense, God and the world are co-creators of each event. God draws the world into being and draws individual creatures toward particular, relevant responses on the basis of God’s aims of love, justice, and richness of experience. But creatures respond not only to God’s aim but out of their own history, environment, and perspective. That response can vary from radical rejection of God’s will to mild qualification. Thus, in this view, Hitler’s murderous policy toward European Jews or the recent Philippine earthquake or the AIDS epidemic or deafness or blindness or paralysis of limbs would never simply be attributed to God. (emphasis mine) Rather, God would be seen as responding to these kinds of events as God responds to all kinds of events: by seeking to draw or lure from them consequences that are compassionate, creative, and redemptive.

Why the difference?  A first answer is that this mother is taking into consideration the entire scripture, rather than a single text.  Knowing all the scripture is important to grasping something of the character of God.  In this case, she sees, rightly, that God claims responsibility for hard things like disability.   In Exodus 4 and John 9, God specifically says he created some to be disabled – end of story, no other explanation possible. And thus she is able to grasp something of the wisdom of God:

But as for you, continue in what you have learned and have firmly believed, knowing from whom you learned it and how from childhood you have been acquainted with the sacred writings, which are able to make you wise for salvation through faith in Christ Jesus.  All Scripture is breathed out by God and profitable for teaching, for reproof, for correction, and for training in righteousness, that the man of God may be competent, equipped for every good work.  2 Timothy 3:14-17

The second answer is that this mother is taking seriously that God is God, and has authority over everything:

But who are you, O man, to answer back to God? Will what is molded say to its molder, “Why have you made me like this?” Has the potter no right over the clay, to make out of the same lump one vessel for honorable use and another for dishonorable use?   Romas 9:20-21

It is best summed up by this quote from Abraham Kuyper:

There is not an inch in the whole area of human existence of which Christ, the sovereign of all, does not cry ‘It is mine.’

Oh people of God, cling to that kind of sovereign, powerful Jesus, and not one who is ‘just one factor’ in all that happens in the world!

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