Archive for September, 2010

The disability community has a great friend in Justin Taylor.  Many years ago he gave lectures at Bethlehem on the case against abortion, which opened my eyes to new ways to engage that issue.  I love how he thinks, and how he has helped me think, about any number of issues.

I highly recommend his blog in general, and specifically today he brings to the world two books I also highly recommend.

Thank you, Justin! May God open many, many more eyes to what he is doing on this issue of disability!

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Wednesday afternoon I was reminded that in some parts of the world children with disabilities are immediately hidden away or given up to orphanages.  The shame is too great for families to bear.  The churches in those areas are too ill equipped to intervene or even prepare their people for the situations they find themselves in.

It was a good reminder that we are not ashamed of those God has created for his  glory to live with disability.  And even if we started out or continue to struggle with being ashamed or angry or bitter, God can turn cold, hard hearts into ones passionate for his name’s sake, completely in love with those entrusted to us by the creator himself.

On Friday the Desiring God National Conference begins.  We are expecting more than 3,500 people to attend.

This year, attendees will have three different opportunities to be introduced to disability:

  • Krista Horning will be signing Just the Way I Am at 11:00 a.m. on Friday morning, and the book will be sold in the bookstore at the conference
  • The Elisha Foundation will have a booth
  • Wrestling with an Angel will be available for sale for the first time, Lord willing.

Will you pray with us?

  • That those who have never even thought about disability will be gripped by God’s sovereignty and goodness over disability, and will be given a new, God-given imagination for welcoming those with disabilities into their churches
  • That those who are coming with hard, deep questions about the suffering they or their children with disabilities are experiencing will be overwhelmed by how short this life is, by how long eternity is, and by how massively strong and purposeful God is in what he is doing, for his glory and for their good
  • That these resources would ignite passionate spreaders of the supremacy of God in all things for the joy of all peoples through Jesus Christ.  Where the world sees weakness, expense and inconvenience, may thousands see the most vulnerable among us as God created them: indispensable (1 Corinthians 12:22).

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Note: some of you may have already seen it when I accidentally posted on Sunday.  I have a little more info than I did before!

I have recommended Greg Lucas’ blog,  Wrestling with an Angel, many times.  Greg is the real deal, having gone through much hardship in his family while clinging to the promises of God.  He loves the Word.

And soon his book, Wrestling with an Angel, will be available!

I was grateful to be included as a reader of an early draft, and was glad to provide this endorsement:

It is the rare book that makes much of God and our dependency on Him while also celebrating His goodness through hard things. Using his own example of parenting a child with significant disabilities, Greg demonstrates what relying on a sovereign God through extreme difficulty and suffering looks like. This book is a gift to the church, and particularly to men who need an example of masculine, Biblical leadership in the face of complex, confusing, and overwhelming circumstances. If you have ever confronted hardship and questioned God’s goodness, this book provides a real-life example of trusting in the promises of God.

Noel Piper, Justin Taylor and Justin Reimer have also recommended it.  You can read their endorsements on Cruciform Press’ facebook page (note: you might need to be logged in to Facebook for this link to work).

Lord willing, advance copies will be available for purchase at the Desiring God National Conference!  I understand it will be available on the Cruciform Press website around November 1.  Watch here for more details on how and where to purchase.

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Emily Colson, daughter of Chuck Colson and mother to Max, has added to the growing number of parents who are sharing their stories of raising a child with significant disabilities.  She brings a welcome Christian orientation to her book.

Max lives with autism and Emily Colson does not hold back in her writing about it.  We are introduced to the deep challenges his disabilities create in both their lives, the kind of challenges other parents will immediately recognize.  Her writing is clean and clear and frequently beautiful.

There is a great deal that churches can learn from her story.  Her friend, ‘Peppermint Patty,’ exemplifies some of the best of Christian community – immediately welcoming Emily and Max into her life, encouraging Emily to connect with other women for prayer and Bible study, and going with Emily to important meetings with doctors and other specialists.  We have been blessed to have such people in our lives; her descriptions of various people frequently reminded me of people from Bethlehem.

Unfortunately, the video for this book, created by Zondervan, does not even begin to demonstrate the challenges associated with his disability and I believe does a disservice to the book.

And while there is much to commend, I find I can only cautiously recommend it:

  • She frequently talks about the Bible, but infrequently actually quotes it.  There were many natural opportunities to do so.  Her story is certainly inspirational, but it is the Word that is both foundational and transformational.
  • There were some head-scratching moments when I wasn’t sure what conclusion I was supposed to take away.  For example, there’s a heartwarming story about a visit to a Catholic church, and the impact that Max had on several people during his visit.  Though it is a delightful experience, there is no acknowledgment on the author’s part that Catholics and Evangelicals differ on some important aspects about God and his word.  I don’t by any means suggest she isn’t serious about her faith; she most certainly is.  But a non-Christian might conclude there really isn’t all that much difference between the two.

Finally, as a man, I wasn’t put off by how feminine this book is, but it did make me long for a more masculine voice on this subject.

Fortunately, that voice is coming very soon!  Watch the blog for more details.

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Rejoicing in ‘bad’ behavior

A week ago, Paul quietly sat with his mom during the worship service, causing no disruption or disturbance to anyone.  And my heart ached for him.

This week, he didn’t make it through two minutes before I knew his behavior would disturb and annoy potentially most of the congregation.  And I happily took him out.

Does that seem backward to you?

Last week Paul suffered a seizure before the Saturday evening service.  He was quiet because his mind and his body were exhausted.

This Saturday evening he had gone seven days without a seizure and his regular personality was emerging.  His multiple disabilities give him no idea that his happy sounds might be inappropriate or might annoy others.

So, though I was a little disappointed I couldn’t stay in the sanctuary, my heart was not heavy as I took him out to sit with the other families of wiggly ones, just outside the sanctuary.

And I rejoiced to God at the ‘bad’ behaviors of my happy boy.

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The discussion this week on genetic counseling has been very helpful for me personally.  I’m grateful for the many public comments and personal emails.  I like reflecting on God’s sovereignty over disability.

But that doesn’t mean I always get it, even when I’m writing it.  Here’s what I mean.

On Monday I bound into work, looking forward to a busy week of activities as we handle both routine business and extra things around the Desiring God National Conference as well as some projects my team is working on.  The family also has the regular activities of home and school, and figuring out Paul’s latest medical issues.  Ours is a typical, busy life.

At lunch on Monday I crack a tooth.  It doesn’t hurt, but it is annoying.

On Tuesday I call my dentist.  They could see me right away!  “Oh no, you don’t understand I am very important and have many things to do and the whole office would just shut down if I didn’t come in so could we make it Wednesday or Thursday?” I replied.  Actually, what I think I said was, “I have several meetings at work today; could we make it Wednesday or Thursday.”  Wednesday it was.  I inform my office colleagues I’ll be out in the morning, but should be in for afternoon meetings.

Wednesday morning I walk the two blocks to my dentists office.  The dental hygienist takes me back for x-rays and to have a look, and immediately concludes the tooth will have to come out.  Rats, I’m thinking, or maybe not!  Maybe I’ll get out of here faster that way.

The dentist comes in and says it definitely needs to come out, and the wisdom tooth above it as well.  Ugh, I think.  I ask if it could wait, as I have much to do today.  My dentist is a reasonable, jovial man, but both he and the hygienist, together and separately, make it clear I should have this taken care of as soon as possible.  Fine, I say.  Can we do it now?

No, this will require an oral surgeon.  He can see you today, but he’s located in a southern suburb.  Would I prefer local or general anesthesia?

At this point you would think it would dawn on me that I wasn’t in control of anything.  It did not.

I persevere in my desire to keep things under my control, trying to get clarity on what this means for my schedule and how quickly I can get on with life.  “General anesthesia?  No, I’ll need to be able to drive after.  Tell him local.” I remember both the dentist and the hygienist looking at each other when I said, basically, “I can get back to work tomorrow, right?”  They didn’t say no, but they sure weren’t comfortable saying yes.

I like to think I’m a praying man, but mostly as I walked the two blocks home I’m thinking how inconvenient this all is and why did it have to happen now and oh, woe is me.

Again, you would think, having a son with a life-long disability and a spouse with the specter of cancer over her head – and the extraordinary grace God has provided time and again in our lives – that I would fight the sin of self-sufficiency and pride much more effectively.

But it wasn’t until I got to the surgeon’s office that I realized, I’m having oral SURGERY!  I may not be returning to work right away.  I pulled out my iPhone and read from my devotions for the previous day:

My shield is with God,
who saves the upright in heart.
God is a righteous judge,
and a God who feels indignation every day. Psalm 7:10-11

I had not had an upright heart through any of this.  God SHOULD be indignant with me.  I had wickedly placed things under my command, grumbling as my plans changed rather than seeing all the graces being offered to me, thing like:

  • Dental insurance
  • A dentist who saw me right away
  • An oral surgeon available that day
  • The financial ability to pay for it
  • An understanding workplace – my boss was the first to suggest I shouldn’t come in the next day
  • Easily accessible pharmacy and pain medications
  • A very helpful spouse who has shouldered even more responsibilities at home while I recover.

But most importantly, I am surrounded by undeserved, uncommon grace. I knew I could rest in Jesus, who is faithful and just to forgive my sins as I confessed my pride and my grumbling heart.  As only God can, he turned my situation into an opportunity to praise him for his extraordinary love for me – by cracking my tooth and changing my plans.

As I write this on Thursday, I’m obviously not at work.  The drugs that are keeping the ‘edge’ off the pain make it unwise for me to drive, and I can feel my whole thinking process has slowed way down.  But, Lord willing, this is all temporary.

What I hope isn’t temporary is consistently remembering who is really in control, and being very happy about it!

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Bethany was kind enough to add to the discussion on genetic screening yesterday.  She also wrote about it on her blog and added some questions of her own:

Is it too much to expect my doctor to value my child herself, not just because I value him/her?
Is it dumb to insist on a pro-life doctor when a pro-choice one may be just as or even more skilled medically?
Is it worth making a fuss about these tests. I mean, should I just go through with them to make the doctor happy?
Would it possibly be helpful to know about a disability before birth? Would it allow time to get the necessary specialists together so the baby could have instant care upon birth?

The question about knowledge of disability before a child is born is a really difficult one.  People are generally not neutral on that subject, either.  The way it is handled can create division between friends and family and church members.

Here’s how we talked about it in a document we submitted to the Elders of Bethlehem almost six years ago:

While we take a strong stand in support of pre-born children, we take no particular position on the use of technologies in discovering disability among the pre-born.  Even amongst the parents of the current Disability Ministry, different couples chose different routes. . .  In both cases, the children were going to join their families as God allowed, regardless of what was known or not known. (Horning, Horning and Knight, p. 8 )

On the question about the life and worth of the pre-born child with a disability we were all in absolute agreement: let the child live.  After that, the choices are not quite so clear.

Discovering disability before birth is just one of several questions that could easily divide us within the disability community.  We are bombarded with choices in therapies, nutrition, medication, educational programs, and emerging technologies.  And our children all respond differently, even when they have similar diagnoses.

But in looking for an answer for our child or children with disabilities, we can become ferocious even with (or possibly especially with) those who share some commonality with us.  The tone of voice may be calm and even, but the words used might be shouting:

You must do this for the sake of your child!  How can you possibly make a different choice than I am making!!  You don’t care about your child!!!

Ironically, this was probably a greater problem during Dianne’s treatment with her cancer than it has been in our situation for Paul.  Lots of people, including some who felt the need to come into my own home, had opinions about what treatments she ‘should’ be getting.  I’m still sorry I didn’t throw one couple out of my house and gotten the elders involved with church discipline!

Oh how we need God to help us to serve each other with wisdom and kindness!

Of course, sometimes we need to speak up and challenge other parents in the decisions they are making.  But I find that this is rarely necessary, especially after they have dealt with disability for a few years.  If I remember to just listen from beginning to end, and ask a few questions to help me understand, usually I can see the logic a parent is applying – and that my first impression to jump in and ‘save the day’ would not only not have been welcome, it would also have been wrong.

In the end, we are all fallible.  I know my son better than you do, but I don’t know him like God does.  And he has promised to help us:

fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand. Isaiah 41:10

And I believe that means he will help us – no matter the question.  When we see a brother or sister doing something for their child with a disability, something that we disagree is right or effective, we should first go to God and ask for his help and for his wisdom and for a clean heart.  And then we go to that brother or sister in love, ready to serve, mindful that God alone is God.

I’m praying that I can behave more like this and that we can all be known for this:

Therefore encourage one another and build one another up, just as you are doing. 1 Thessalonians 5:11

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