Archive for July, 2010

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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We continue to be mystified by Paul’s ‘spells’ that leave him uncomfortable, unable to eat, and without his usual, happy spark.

I hate these episodes. Dianne hates them more.

But we cannot let our emotions rule how we respond and advocate for him with medical professionals. We must be thinking clearly; we must pay careful attention to what is being advised and make rational assessments on his behalf.

And this is nothing compared to some previous episodes, which I know many of you can identify with:

  • The surgeon who comes out, in the middle of surgery, to let us know he is seeing something other than what he expected, and now he wants to change the surgical intervention. In seconds, while this new and anxiety-producing information is just being processed, we must make a decision and give our consent to proceed as advised or not.
  • Surrounded by professional educators and therapists in IEP or IFSP meetings, a new and devastating ‘diagnosis’ is put on the table without prior knowledge. The ‘team’ wants to make a decision about his educational plan even as this new information is sinking in.

Thinking carefully while feeling and hurting deeply is the only option for those of us dealing with disability.

I’m grateful God is a perfect thinker:

Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgments and how inscrutable his ways! “For who has known the mind of the Lord, or who has been his counselor?” Romans 11:33-34

For the foolishness of God is wiser than men, and the weakness of God is stronger than men. 1 Corinthians 1:25

I’m grateful God feels perfectly with a great love:

But God, being rich in mercy, because of the great love with which he loved us, even when we were dead in our trespasses, made us alive together with Christ—by grace you have been saved— and raised us up with him and seated us with him in the heavenly places in Christ Jesus, so that in the coming ages he might show the immeasurable riches of his grace in kindness toward us in Christ Jesus. Ephesians 2:4-7

And this God, who thinks and feels infinitely more than we can imagine, has promised us that he will help us in our time of need, including when we must think most clearly after getting news that has just shattered and devastated our world:

And my God will supply every need of yours according to his riches in glory in Christ Jesus. Philippians 4:19

Thank you, Lord, for who you are and that all your promises are true!

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Bright Valley of Love embeds many warnings to us, as well as a picture for how the church could respond to those living with severe disabilities.

For example, as the National Socialist Party (the Nazis) and the Communists battle for control of Germany in the 1930’s, Gunther believes they both “sound all right to me.”  To which the leader of Bethel replies:

“Gunther, beware of cruel and ruthless men with high ideals,” said the voice behind them quietly.  Pastor Fritz had come unnoticed into the room.  “In fact, I would even go so far as to say that we must beware of kind and cultured men with high ideals – if in all their kindness and culture they do not have faith in the Lord God and Jesus Christ, if they do not have his love in their hearts.” (Hong, p. 117)

From listening to German radio, the young men with disabilities knew what this meant after the Nazi’s took control.  These same young men created their own list of who would be eliminated.  That list included them:

  • The “very worst cases, those who are completely worthless to society.”
  • The ones who “are not able to contribute anything to the economy but are a fearful drain on the nation.”
  • “I do not call the lives these poor creatures live human.” (Hong, pp. 147-148)

We hear the same arguments today, sometimes from ‘kind and cultured men with high ideals.’  People with credentials and Ph.D.s and many books to their credit.  Those sections of the book are deeply disturbing in how ‘fresh’ they sound today.

Yet, this little book also gives examples of how to fight such evil:

On his knees to God in his little room of prayer at House Burg, he prayed that he would do nothing hot-headed or foolhardy that would bring sure death to those trusted in his care.  At the same time he prayed for the boldness and courage to fight against this war upon the weak and helpless, to take all the responsibility upon his own shoulders so that none of his fellow workers would be charged with guilt by the Party and arrested by the Gestapo.  He prayed that House Burg, so weak a fortress, indeed, no fortress at all in this new kind of air war, would be a mighty fortress for those the Nazi Party considered to be worthless creatures.

‘Oh Christ Jesus,’ he prayed, ‘you who loved the lowliest and the least, help me, guide me, so that not a hair of their heads is touched.  Make me wise as a serpent and as gentle as a dove.’ (Hong, p. 129)

Prayer, Bible, and worship are constant themes in this book.  May they be so for us as well.

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What has been is what will be, and what has been done is what will be done, and there is nothing new under the sun.
Is there a thing of which it is said, “See, this is new”? It has been already in the ages before us.  Ecclesiastes 1:9-10

I sometimes live with the romantic notion that things were better before.  Surely the horror of millions of babies being aborted is a new thing.  Surely people before our time were different.

The Bible, of course, dispels that notion.  The horrors committed against children go back thousands of years:

Because they have filled this place with the blood of innocents, and have built the high places of Baal to burn their sons in the fire as burnt offerings to Baal, which I did not command or decree, nor did it come into my mind. . . Jeremiah 19:4b-5

Bright Valley of Love reminded me that specific kinds of evil thoughts about and actions against people with disabilities are also not new.  And sometimes those thoughts come from the closest of relatives:

But this grandchild of hers who ought to be gathering the deadwood, emptying the slop pail in the gutter below, and carrying out the ashes for her – this brat was not worth one dry twig or a bucket of potato peelings and rotten cabbage leaves!  He was human junk, that’s what he was, that’s all he was. (Hong, p.14)

Is that statement so different from this one, from Peter Singer’s Practical Ethics published in 1993?

At present parents can choose to keep or destroy their disabled offspring only if the disability happens to be detected during pregnancy. There is no logical basis for restricting parents’ choice to these particular disabilities. If disabled newborn infants were not regarded as having a right to life until, say, a week or a month after birth it would allow parents, in consultation with their doctors, to choose on the basis of far greater knowledge of the infant’s condition than is possible before birth.

That’s a polite way of saying, ‘this baby born with a disability was human junk, that’s what he was, that’s all he was.’  But obviously there is more for Dr. Singer – we should just get rid of children like that.

Yet, as cruel as that statement was by the grandmother, her behavior at least acknowledged something about her responsibilities to another human being, in this case her disabled grandchild:

To the grandmother’s credit, it must be said that she dutifully spoon-fed the little cripple in the back room, dutifully lifted him on the potty-chair every morning and evening. (Hong, p. 16)

And because his minimal needs were being met, eventually this boy would be part of a community of believers who behaved very differently toward him, recognizing his inherent, God-given, image-bearing dignity.

Bright Valley of Love is a wonderful, hope-filled story, but it does not begin that way.  The opening chapter, “Nothing but a nothing,” is hard and bitter and biting.  The jarring, offensive language sprinkled throughout – like ‘the little cripple’ – contrasts significantly with the God-honoring behavior of the leaders at Bethel he would eventually meet.

The contrast is a good one.  The beauty he experiences is so much more obvious and glorious, and certainly not taken for granted, when compared to the darkness of Gunther’s early years.

And that is why we should talk openly about all that our children with disabilities mean to us, the things that are difficult and those that bring joy.  Yes, disability is hard.  I am doing things I never dreamed I would be doing, and I will be doing those things for him for as long as God gives me strength and breath.

And in those moments I see God is extraordinary in his beauty and provision and sovereignty – in ways I would have never seen or experienced but for my boy’s disabilities and my wife’s cancer.  I understand what Paul meant when he wrote, ‘as sorrowful, yet always rejoicing.’

Tomorrow, an even darker reality then and today.

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Last month Brenda Fischer announced a new disability section at Bethlehem’s church library.  Bright Valley of Love by Edna Hong is one of the books she mentioned, along with her personal endorsement: “This is a book you will never forget.”

I want to add my own endorsement.  This book, written from the perspective of a boy with significant physical disabilities, is like none I have ever read.

The subtitle, “The true story of a handicapped child who finds a haven of love in the nightmare of Nazi Germany,” is not entirely accurate as only the final two chapters deal with that horrible time in our history.

But every page deals with the reality of this boy’s existence – the cruel beginnings, the extraordinary change that comes when Bible-believing, God-honoring men and women enter his life, and the incredible, courageous intervention – and examples of prayerful dependence – that protects this community during the worst of the Nazi campaign against those with disabilities.

Here is a taste (emphasis in bold is mine):

The two looked at each other, looked deep into each other.  Pastor Fritz looked and saw the boy within the stunted, twisted body.  The boy within the stunted, twisted body looked and saw the man who did not see his stunted twisted body, did not see it at all. . .

In a wave that flooded over the boy a dim and jumbled but wildly wonderful realization of the possibility of life – that he was not a piece of human garbage carried along on a gray and endless tide of time.  (Hong, p. 38)

How I want this for Bethlehem – that the boys and girls and men and women with disabilities who come would be seen and welcomed as real people rather than their disabilities!  I see it happening, praise God; yet there is still so much to do.  How frequently I still fail at this, even after God has blessed me with so much.

Tomorrow, the reality that the evil of that time is still with us today.

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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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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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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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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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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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