Feeds:
Posts
Comments

Archive for the ‘commentary’ Category

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

Read Full Post »

You may have noticed a comment on this blog posting from Jill, a mom we’ve come to know through our typically-developing kids’ school.  She has a beautiful, happy son who happens to live with Down Syndrome.  Our anonymous genetic counselor responded to Jill’s comments as well.

I was a little surprised at this person’s uncertainty at Jill’s sadness; the delight she has in her boy is obvious, and the routine destruction of such children makes her sad.  Makes me sad as well.

But what really surprised me was that I felt I understood some of his or her motivations more clearly.  I have also been motivated in certain similar ways, and still struggle to kill the root of sin attached to them.

Things like, fear of what other people might think:

“What may appear to be balanced from the counselor, may seemed biased and opinionated by the couple” or “Presenting information that a couple does not want to hear is often considered unbalanced.”

A child’s life is being considered for destruction, and the baby has no advocate because the counselor does not want to be perceived as biased.

Things like, its up to somebody else to deal with the problem:

“Many couples have preconceived notions about what these conditions are and, perhaps, more awareness needs to be presented to the general population prior to any screening or diagnostic tests.”

Well, it isn’t happening; you are now the person who has the opportunity to educate in ways that might make everyone uncomfortable.  Letting people live in their preconceived notions isn’t neutral and non-judgmental, especially for that child.

I understand both very well. Pride and fear are very strong motivators.

Stuck in pride and fear, supported by a discipline that bases itself on cool neutrality, this poor person is trapped.  And I’m going to guess, would entirely disagree at being trapped.

For to set the mind on the flesh is death, but to set the mind on the Spirit is life and peace.  For the mind that is set on the flesh is hostile to God, for it does not submit to God’s law; indeed, it cannot. Those who are in the flesh cannot please God. Romans 8:6-8

Let us pray that God would delight in opening this person’s eyes to the beauty of Jesus Christ.  And may we hear about a bold, innovative genetic counselor someday, unafraid to proclaim not just opinion but truth, to encourage deeper engagement with the finality of certain decisions, with the happy result of more children being allowed to live.

And I really mean that.  I was much farther away from God than this person has communicated.  It is all a work of God, as summarized nicely in this quote from Spurgeon:

I believe the doctrine of election, because I am quite certain that, if God had not chosen me, I should never have chosen Him.*

*Thank you to Randy Alcorn who tweeted that on Tuesday.

Read Full Post »

We were fortunate to have a genetic counselor respond to my post last week on prenatal counseling.

It was thoughtfully written, even as he or she disagreed with me.  I recommend you read it.

I have emailed the below to the counselor.  I am posting my reply here to invite further comment from everyone.  How would you have answered?

And I apologize for the length – I did not have time to make it shorter.

Dear genetic counselor,

I’m grateful for your comments and that you took the time to reply.  I would ask, even plead, that you consider what I am writing here.  There is a great deal at stake.

God has obviously gifted you with a desire to serve others and the ability to understand and communicate extraordinarily complex aspects of God’s human creation.  That is a tremendous trust you have been give.  But with it also comes warning:

  • Everyone to whom much was given, of him much will be required, and from him to whom they entrusted much, they will demand the more. Luke 12:48b

Whether you agree or not, you are in a position of authority in your counseling.  People will trust that your education and experience gives them the opportunity to make a good decisions.  Those in authority will be held to a special kind of accountability before God.

And I believe you when you write that you attempt to bring non-directive counseling to your patients.  From our experiences, which you may have also noted on the New York Times blog on this subject, that is not the norm.

Documented abortion rates of 90% or higher for children identified with Down syndrome clearly show where society has landed in terms of the value of these children.  I will not make an apology for asking counselors in your position to provide some balance, even advocating for their very lives, because the evidence is clear that these children are already as good as dead if their genetic anomaly is discovered before they are born.

So I write this not just for the sake of the people under your care, but also for you.  Jesus promises his help and provision in this life and ever increasing measures of joy for eternity – and I want that for you as well.  But it must be rooted in something greater than the here and now, and that impacts decisions that are made in this present time.

The present time is hard. You rightfully point out some of the difficulties people face such as lack of economic ability or medical care.  And, let’s face it, many people just don’t believe they can handle the time, the heartache and the inconvenience of disability.  If you have had the opportunity to read this blog, you know that we experience hardship on every side.

But because we begin in a different place, we also end up making different decisions; I freely proclaim my desire that others make those same decisions with us.

For example, from your response, and please correct me if I’m wrong, you would say that people have the right and the responsibility to consider the impact a child with a disability would have on the parents and the family.  I would agree.  You would include in those rights, the authority to end that pregnancy if a disability was discovered.

And that is one place where we differ.  Because God has created this child for his good purpose, we wait with expectation of God’s promise of help.  Exodus 4:11 is a clear statement of God’s intentionality in creating some to live with disability.  He says so again in John 9:3.  And he makes a blanket statement about his creating all life in Psalm 139:13-16.

I believe you would also say it is incumbent on parents to plan for the future.  Disability confounds such plans, so, if I am representing you fairly (and please correct me if I am wrong), parents could rightfully terminate a pregnancy because of the unknowns associated with disability.

Again, if you have had the opportunity to read this blog, you will know we live with uncertainty in our knowledge of the future.  Right now my own family is trying to figure out a vexing issue involving my son’s seizures.

But, again, the place we start from is that God has perfect knowledge of the future; in fact, he is entirely in charge and taking us to his preferred future.  And he is doing it entirely for our good (Romans 8:28)!  This promise, for those who love him, is glorious!  And while our pleasure-loving, suffering-avoiding culture cannot understand it, God uses suffering to bring people to a knowledge of and trust in him.  For those of us who have experienced it, the suffering is entirely worth it.

Of course we also try to plan appropriately, but we can live in the knowledge that God has given us our children, knows our future, and has promised to supply every need we have (Philippians 4:19).

That is a global promise for those who cling to Jesus.  As you also know, much heartache comes after children are born – a typically developing child experiences a traumatic brain injury, another contracts a serious illness, a third becomes addicted to drugs or alcohol.  There are no guarantees, even with the most careful of planning, that life will be as one expects.  But those who trust in God know that he will help in every circumstance, even the most horrific of circumstances.

A man who knew something about pain and suffering wrote this:

Five times I received at the hands of the Jews the forty lashes less one. Three times I was beaten with rods. Once I was stoned. Three times I was shipwrecked; a night and a day I was adrift at sea; on frequent journeys, in danger from rivers, danger from robbers, danger from my own people, danger from Gentiles, danger in the city, danger in the wilderness, danger at sea, danger from false brothers;  in toil and hardship, through many a sleepless night, in hunger and thirst, often without food, in cold and exposure. (2 Corinthians 11:25-27

That same man would write this:

Not that I am speaking of being in need, for I have learned in whatever situation I am to be content.  I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through him who strengthens me. Philippians 4:11-13

I have experienced this as well.  When my son was first born, I considered myself cursed.  Now, I see that it was all mercy and all grace.  Families in our situation will say over and over again, this child is worth it.  There are more examples than I can number of people identifying their child with a disability as the means God chose to use to break them of their pride, their obsession with material things, their ambitions that were coming at the cost of their families and marriages.

The very same people who will freely admit raising their child with a disability is hard, even the hardest thing they have ever been asked to do, will say that child has brought the greatest change for good in their lives.

I pray that is part of the non-directive reality you are sharing.

And none of it is anchored in ourselves, our child-rearing techniques, the medical interventions we pursue or the education we are required to advocate for, even though it is guaranteed under Federal law.  It is anchored in the obedient life, death and resurrection of Jesus.

You are right that ‘judge not lest ye be judged’ is in the Bible.  In fact, Jesus said it in Matthew 7.  Carefully read, it is a warning to take care of one’s own sins before judging others.  For that, I take your warning and am grateful for it.  It is still far too easy for me to slip into self-righteousness.

It is not, however, a call to be silent.  Jesus was not silent about advocating for the poor, the weak, the widow and the orphan.  And he did so not just for the sake of the powerless and the poor, but for the sake of the entire body.  When people are free in Jesus – both free from their sin and free from anxiety about the future – remarkable things happen that bring glory to God and peace to their own souls.

It is the weakest that Paul describes as ‘indispensable’ (1 Corinthians 12:22) – not the powerful, the wealthy or the educated.  God has particular care for such little ones who are entirely defenseless, hated by the culture, and legally allowed to be destroyed.

It does not have to be that way.  Jesus promised freedom:

Jesus answered them, “Truly, truly, I say to you, everyone who commits sin is a slave to sin.  The slave does not remain in the house forever; the son remains forever. So if the Son sets you free, you will be free indeed.

That freedom came at a huge price – his very life, in obedience to the Father, being poured out as a sacrifice for us.  He who never sinned took on our sin for us, to bring glory to the Father, to satisfy all the righteous requirements we could never meet, and to offer us joy in Jesus for eternity.  That is amazing!  It is entirely free – we can’t earn it, we can’t buy it, we can’t justify ourselves into it, we can’t talk God into it.  It is all gift.

Someday this life will end.  For some of our children, life is just a few minutes outside of the womb.  For others, 100 years will pass like a vapor.  In comparison to eternity, parenting a child with a disability (knowing God will help us even on the darkest, hardest days, providing strength for the  day) becomes something we not only can do, we want to do it for his glory and for our own joy.

Paul talked about it this way (remember, he is the man who experienced the hardships listed above):

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 2 Corinthians 4:16-18.

Won’t you join us in this kind of freedom with Jesus?  This sermon from John Piper says a little bit more about this Jesus, and about disability.  I pray that God would open your eyes to see him and treasure him above all things.

Read Full Post »

Ours is a pretty happy home, largely because Dianne pursues the good of her family and frequently counsels me on how I can better serve the children.

And she pursues our good because it is an overflow of what Jesus has done for her.  Whether it is dealing with the common things of family life, issues related to Paul’s disability, or her own cancer, I know I will hear these words from her, “God will help us.”

Because she manages our household, she also manages most of Paul’s medical care.  After he had two seizures on Wednesday, she was on the phone Thursday morning with the neurologist’s staff.  She would not describe herself this way, but as I listened to her explain the situation, I was struck by many of her qualities exemplified in that phone call:

  • Her knowledge of and passion for her son
  • Her desire to serve him
  • Her persistence in pursuing his good
  • Her ability to articulate clearly and purposefully
  • Her ability to listen and understand new information
  • Her kindness to whoever was on the other end of the phone
  • Her genuine gratitude

It isn’t like this is unusual for her – she demonstrates these qualities all the time.  So I don’t exactly know why the Holy Spirit encouraged me to listen differently to this phone conversation.  Maybe it was to encourage me to pause and thank God again for this woman.  I am happy to do so!

An excellent wife who can find?
She is far more precious than jewels.
The heart of her husband trusts in her,
and he will have no lack of gain.
She does him good, and not harm,
all the days of her life.  Proverbs 31:10-12

Read Full Post »

Yesterday I posted a short clip of Krista Horning’s interview on KTIS last week, and today I have a clip from her mother, Mary.

Theirs is a hard story, full of questions about God.  Yet God transformed it, using promises from his word.

To quote Mary, “God is sovereign, and God is good.”  Yes!

I am grateful to God for the entire Horning family and his faithfulness in holding them up through many difficult things.

Again, thank you to KTIS and the Faith Radio network for making this interview freely available on their website.

Read Full Post »

Stephen Hawking has written a new book, The Grand Design, in which he makes statements about God, or at least asserts that God is not necessary to explain the universe.

This isn’t a post about that.  James Anderson wrote a helpful reply if you are interested in exploring  that issue further.

No, this is a lament:  There are ‘Christians’ who seem to think Dr. Hawking’s disability is worth mentioning in their usually-inadequate defense of  God or the Bible.  And by ‘mentioning’ I mean they use it in ways to make fun of or defame Dr. Hawking.

There were enough negative references to his disability on Twitter that a Washington Post blogger wrote a column on it.

I was hoping this was an over-statement – how could anyone be so rude?  Or childish?  Or uninformed?  Unfortunately, after I read the comments attached to a couple of major newspaper articles, I saw the same thing as that Post blogger.  It wasn’t many, but enough to be discouraging.

I expect this new book from Dr. Hawking will be an item for a while.  So, even if it is only a few who conduct themselves badly in public, let’s help people in our churches understand two things:

  1. Stephen Hawking is not an idiot; Christians (and everyone else) look foolish when calling him that.  He may be an opportunist – there is a reason he writes ‘popular’ works rather than limiting his writings to peer-reviewed journals and seminars – but he is no ‘idiot’ in the sense that most people mean.
  2. Dr. Hawking’s disability is no indicator of his standing before God.  God is completely free to do whatever he wants to with his creation, including creating geniuses to live with significant disabilities who will deny him.

I find it difficult to do this without being judgmental or self-righteous.  That, of course, doesn’t invite people to consider the heart-work that needs to happen which results in a changed attitude and actions.  It does us no good if people feel bullied into silence.

Yet, when people in our churches make a direct connection between disability, disease or suffering and God’s displeasure, they are contradicting the Biblical accounts of Job, the Apostle Paul and the man born blind.  That can’t go unchallenged, even if the challenge needs to be winsome.

And that ultimately becomes a statement about God and his sovereignty over his creation.

Of course I disagree with Dr. Hawking’s conclusions about God.  That breaks my heart.

But it also breaks my heart when those who claim the name of Jesus decide sarcastic remarks about disability will somehow make Jesus look beautiful.

Read Full Post »

Thank you to my favorite Presbyterian (who happens to be my sister) for sending me this quote from Thomas Watson’s book, All Things for Good:

To know that nothing hurts the godly is a matter of comfort; but to be assured that all things which fall out shall cooperate for their good, that their crosses shall be turned into blessings, that showers of affliction water the withering root of their grace and make it flourish more; this may fill their hearts with joy till they run over.

Read Full Post »

Why should we pay attention to who is teaching and what is being taught in our colleges and universities today?  Why should we pray for and support academic institutions that seek to honor God above all things?

John Maynard Keynes offers a simple and compelling reason:

The ideas of economists and political philosophers, both when they are right and when they are wrong, are more powerful than is commonly understood. Indeed the world is ruled by little else.

Practical men, who believe themselves to be quite exempt from any intellectual influence, are usually the slaves of some defunct economist.

Madmen in authority, who hear voices in the air, are distilling their frenzy from some academic scribbler of a few years back.

Read Full Post »

Bethlehem’s own Lee Burtman, the volunteer Disability Ministry Site Leader at the North Site, wrote a compelling, convicting article for the most recent Minnesota Christian Chronicle.

I particularly appreciate it because Lee is actively involved in making things better for many families like hers.  She, and her son, are gifts to Bethlehem!

You can read her article here.

Update:  I understand some of you are not being taken directly to the article in the link above.  The article can be found on page ten, in the middle of the page.

Read Full Post »

Krista Horning and her mother, Mary, will be on KTIS AM-900 this Friday, September 3 at noon (central), being interviewed on the Connecting Faith program hosted by Stephanie Kay.

Krista and Mary will be discussing Just the Way I Am: God’s Good Design in Disability.

Krista emailed, “Would you please pray for us that we would be filled with the Holy Spirit and speak the word of God with boldness?”

I would add, please pray that people’s hearts would be open to hearing their God-centered, Biblical word on disability.  May God be pleased to open many blinded eyes to the beauty and treasure of Jesus Christ through Krista’s and Mary’s testimony of God’s goodness and sovereignty over disability!

You can listen online here or by tuning into KTIS AM – 900 in the Twin Cities area or other stations on the Faith Radio network.

I will also post a link to the interview after it is completed.

Read Full Post »

« Newer Posts - Older Posts »