hallelujah, all I have is Christ {reflections on worship, motherhood, epilepsy, cerebral palsy, adoption, and God's sovereignty}

This was originally posted on my family blog, Dinglefest, but I think it has a place over here too.

If we are late to church, I struggle with worship. Why? Because, given the order of our service, being late means I miss the music.

God draws me into worship through music.

This Sunday, we were on time.

I once was lost in darkest night
Yet thought I knew the way
The sin that promised joy and life
Had led me to the grave
I had no hope that You would own
A rebel to Your will
And if You had not loved me first
I would refuse You still

I've craved sin over the past few weeks. My instinct has been to tell God that He got it wrong. We were supposed to just have one child with special needs, I wanted to say to Him. We have been praying and seeking wisdom about the next child for our family, specifically the timing of another adoption and the degree of disability we'd be open to. I was broken as Robbie seized because I had come to think of special needs among my children as something I got to pick and choose.

But as I ran my hell-bound race
Indifferent to the cost
You looked upon my helpless state
And led me to the cross
And I beheld God's love displayed
You suffered in my place
You bore the wrath reserved for me
Now all I know is grace

In all the circumstances of that terrifying night, God didn't meet me with the wrath I deserved in return for my arrogance in thinking I controlled disability in our family. No, what He laid out for me that night was grace, pure grace.

Hallelujah! All I have is Christ
Hallelujah! Jesus is my life

When you're not sure if your boy will live the night, as I felt when I found mine choking on his vomit and smothering himself in his pillow pet, all you have is Christ. When you lift your boy, thrashing, out of his racecar bed, and lay him seizing on the floor, the only comfort you have as one... five... ten minutes pass is knowing Jesus and trusting Him with your life and that of the unresponsive boy on the floor.

Now, Lord, I would be Yours alone
And live so all might see
The strength to follow Your commands
Could never come from me
Oh Father, use my ransomed life
In any way You choose
And let my song forever be
My only boast is You

Yesterday, this is the verse that messed up all my makeup. "Oh Father, use my ransomed life / In any way You choose..."

Any way You choose.

As I sang those words, I knew they would be lies if I wasn't surrendering it all to God. I was forced to stop singing or to acknowledge that God has the right to use my ransomed life in any way He chooses... even if that means a decade mothering a child with epilepsy.

Indeed, if I have to watch my only son suffer through tests and seizures, who else should I turn to but the One who sent His only Son to earth in the incarnation we celebrate at Christmas, doing so with the full knowledge that He, the Father, would have to see His Son on the cross for my sin?

And let my song forever be / My only boast is You.

Hallelujah! All I have is Christ
Hallelujah! Jesus is my life

My recent blog silence over here has been brought to you by epilepsy (and by what God is teaching us through it)

This blog was going to re-launch in full force on November 26, the Monday after Thanksgiving.

I had posts written up in Word, ready to cut and paste and format and schedule to appear here. Our lives had finally settled down after our adoption of Zoe, and that elusive thing called "normalcy" seemed close at hand. I love this blog and the ways it has encouraged others, equipped ministry, and connected me to folks who have encouraged and equipped me and our church in return. I was so excited to have a plan to dive back in.

But then, the night before Thanksgiving, our son had a very long grand mal seizure. We spent Thanksgiving Day on the pediatric floor of our local hospital.

We had no warning, no expectation of this from our healthy boy who had no special needs... until now. We didn't know until a week later that his seizure was not a one-time fluke and that we were now ushered into the epilepsy community.

We're still in the process of figuring out what life looks like for us now. We're relying on God for wisdom and strength to parent our three blessings: a typical five-year-old daughter who loves her siblings but who is struggling with not being the center of attention right now, a three-year-old son who is rambunctious without understanding what epilepsy means or why we're becoming frequent visitors at various medical offices, and a thirteen-month-old daughter who is sweet and feisty and has almost mastered sitting up but has a long way to go due to cerebral palsy and due to spending her first eight months without a family.

That re-launch with regular postings will be coming soon, but I'm no longer sure when "soon" will be.

Right now, we're hunkering down, clinging to God, and riding out this storm. If you'd like to know more, here's our family blog.

If you'd like to read the full story the full story from the beginning, I'd start with the worst 12 minutes of my life, then read (1) my post just before we got the epilepsy diagnosis with pictures of the seizure emergency plan we bring to church (which I'll be sharing about more here soon), (2) my post about the diagnosis, and (3) our post about God's promises still being true.

As we sort through this new part of God's plan for His glory to be displayed in our lives, I've found sweet encouragement in praying for others. How can I pray for you, your family, or your church today?

Solid resources that are FREE? Inclusion Fusion (all week) and the book Trusting God by Jerry Bridges (on Kindle today)

Want to equip yourself or families you love as you work together to include people of all abilities in the local church? Here are two phenomenal resources that are FREE:

• Inclusion Fusion is up and running for the second year, now through this Friday. It's an online, video-on-demand special needs ministry conference where you can watch a little or a lot... whatever suits your needs and interests. I wasn't able to record a video this time around, but several folks who I know and respect are represented - including John Knight from Desiring God, Mike Beates who wrote Disability and The Gospel (which I'll be reviewing soon), Katie Wetherbee who is speaking about the needed topic of bullying, and Cara Daily whose presentation last year on autism was the most helpful one of the conference to me personally. Here's a post on how Inclusion Fusion works.
• One of my favorite theological books of all time, Jerry Bridges' Trusting God: Even When Life Hurts, is free on Kindle today. Even if you don't have a Kindle, buy the hard copy. This is a book that EVERY ministry leader, especially those wading through life's hurts with those they serve, needs to have (and I also recommend it to any person wading through those hurts, leader or not). It's neither shallow nor dense, and his writing style is easy to read while sorting through difficult topics in the Bible and life. Read it, and be fed and encouraged.

Thanks for your continued prayers for our family. Zoe has been home for four months, we're well into physical and occupational therapy for her, and our house is nearly unpacked from our spring move... in other words, life is almost as normal as it gets around here, so regular posts on the blog should resume soon. 

Including ALL People in the Church (from my #D62012 Nuts & Bolts of Special Needs Ministry session)

Special needs ministry can be done well at any church that is willing to include ALL people in the church by:

Adapting
Loving
Looking

(See how I did that? Yep, an acronym. In order to speak at a church conference, you have to prove that you’re able to use at least one. I got bonus points for having three in my first session, and I’ll share the others later this week.)

Adapting

•        Any degree of special needs ministry in your church will require a willingness to change. Sometimes physical environments – the building, the room set-up, the parking – needs to change…
•       …but more often than not attitudes need to change. The best way to change attitudes is with God’s truth. Here are my eightfavorite Bible passages (and one I don’t often use) related to special needs ministry.
•     Other aspects of ministry – such as curriculum choices, measures of success, volunteer recruitment, and teaching – need to change as needed too.  

o   Volunteer recruitment.
We tend to measure need by the number of kids in a class. For example, if we have two classes with no Sunday school teachers – a large class and a small one – we usually prioritize getting the large class covered because it’s easier for subs to teach a smaller class or to combine the smaller class with another class. However, this way of thinking isn’t always helpful. It is just as valuable to find the right person to be paired with one child who needs support as it is to find the right person to teach a class of 15; God’s economy doesn’t measure the work of the person with one child as more or less important than the work of the one teaching the full class.

o   Curriculum choices.
I can’t tell you the perfect choice that will work for all kids, students, and adults with special needs, but some good features to look for in a curriculum or to add to what you’re already using are visual aids, music, movement, teaching time broken into smaller chunks instead of long stretches, and a clear, consistent, and predictable schedule. (In our adult class, we use the Access curriculum from Lifeway. In our children’s and students’ ministries, we use the Treasuring Christ curriculum, for which I write special needs strategies.)

o   Teaching time.
Here's an example. I recently emailed our children’s discipleship pastor about the need for visual aids – even a few powerpoint slides – during his large group teaching time at our kids’ Sunday night program. The cool thing is that while I asked for this to help one child with autism in the group, it will also benefit most of the other kids and improve the teaching time for all.

o   Measures of Success. 
Fair doesn’t mean equal. Let's identify the core biblical truth we intend to impart in each lesson, andaim for all kids to grasp that, even if some don’t get all the nitty grittyextra tidbits in the story. Let’s learn to celebrate every milestone – a partially memorized verse, even if the other kids memorize five verses during that time; eye contact with a classmate; the first day that a child who is prone to elopement (that’s the fancy special needs word for wandering off or running away) doesn’t try to leave the classroom.

Loving

When we interact with people affected by disabilities, we can show love through:

• Safety. Churches should be safe places, emotionally and physically, for families affected by disability. (I’ll expand more on this in tomorrow’s post.)
• Friendship. Don’t look away or avoid people with disabilities. Get to know them, beyond their disability. Be a friend, and let them be a friend to you. Talk about sports or clothes or church or music or whatever other topic you might talk to any other friend about.
• Confidentiality. We keep the details of their diagnosis and challenges confidential. Those who are involved with teaching need to know them, but otherwise let the person be a person first. None of us wants to walk around church wearing a sign that says “My biggest challenge is [fill in the blank]” so don’t do that to people with disabilities in your church by sharing openly about their stories without permission. (Remember: It’s their story, not yours.)
• Presence. I get to go to my first Miracle League baseball game this Saturday. A young friend of ours is playing, and I might get to see another friend and his family there too. As a dad said in one of Marie Kuck’s D6 sessions, "Just be there and be incarnational in that way." (To be honest, though, I’m not going there with the aim of being incarnational. I just really, really like hanging out with our little friend and his family.)
• Joyful service. One mom told me, “We’ve never been asked to leave a church because of my son’s disability, and I’m thankful for that because I know that sort of thing happens. It’s just that… well, at other churches they make us feel like a burden.” Families affected by disability need to know that church is a different sort of place, a place where we are happy they are there and we care about them.

Looking

You want to look for the kids and students and adults who are not being physically included and who are not being spiritually included.

Physically included: The most obvious (yet easiest to ignore) families who aren’t physically included are the ones who aren’t present at all. If your church doesn’t reflect or exceed the average prevalence of disability in your area (for example, if you’re in the US and your children’s ministry doesn’t have one child with autism in approximately every 88 children), then you need to examine why.

Another kind of family who isn’t physically included at your church could be one who selectively attends, coming to worship but not Sunday school or vice versa.  If that’s due to their preference, fine. However, if it’s because they aren’t able to attend church (perhaps because of sensory overload) or because they aren’t able to attend Sunday school (perhaps because a child needs more help than your church provides for those with disabilities), then you’ve found an area in which you might be lacking physical inclusion.  

Spiritually included:  Once we’re physically including people with disabilities, we are often tempted to stop there. However, if our aim – for example – in children’s ministry is for all children to know Christ and grow in Him, then that means we’re aiming for more than kids simply showing up. Therefore, we ought to also aim for more than the physical presence of people with disabilities throughout our church. (Pat yourself on the back for physical inclusion, though! That’s a good first step. It’s just not your last one.) Consider, what is our goal for all typical members of our church? Are we upholding that for the members who have special needs? Look for the places in which your church is falling short and figure out what you can do to bridge that gap.


What other ideas do you have for ALL people to be included in the church?

My 8 Favorite Bible Verses for Special Needs Ministry (& The One I Usually Don't Use)

When I'm training volunteers, talking to new families, advocating for our ministry within the church, or speaking at conferences, these are the eight verses I use to emphasize the calling that each church has to include all people.

John 9:1-3 

As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him."

What I love: 

that Christ saw the man first, that those who had been spending time closely with Christ still didn't have a right understanding of theology and disability, that Christ makes it clear that disability is not a punishment for sin, and that God has a purpose in disability

Luke 14:12-14 

He said also to the man who had invited him, “When you give a dinner or a banquet, do not invite your friends or your brothers or your relatives or rich neighbors, lest they also invite you in return and you be repaid. But when you give a feast, invite the poor, the crippled, the lame, the blind, and you will be blessed, because they cannot repay you. For you will be repaid at the resurrection of the just.”

What I love:

that people who know Christ are called to act differently and unexpectedly, that God is inviting us to have a party that includes people of all walks of life, and that we are called to serve without expectation of reciprocation

Psalm 139:13-16 

For you formed my inward parts;
you knitted me together in my mother's womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well.
My frame was not hidden from you,
when I was being made in secret,
intricately woven in the depths of the earth.
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.

What I love: 

that God creates all life purposefully and that life begins in the womb

Mark 10:14-15

But when Jesus saw it, he was indignant and said to them, “Let the children come to me; do not hinder them, for to such belongs the kingdom of God. Truly, I say to you, whoever does not receive the kingdom of God like a child shall not enter it.”

What I love: 

that Christ welcomes all, that He rebukes the disciples for keeping the children away, and that He esteems child-like faith over adult intellect

Mark 16:15 

And he said to them, “Go into all the world and proclaim the gospel to the whole creation.

What I love: 

that people with disabilities are part of the whole creation

1 Corinthians 12:12-27 

For just as the body is one and has many members, and all the members of the body, though many, are one body, so it is with Christ. For in one Spirit we were all baptized into one body—Jews or Greeks, slaves or free—and all were made to drink of one Spirit.
For the body does not consist of one member but of many. If the foot should say, “Because I am not a hand, I do not belong to the body,” that would not make it any less a part of the body. And if the ear should say, “Because I am not an eye, I do not belong to the body,” that would not make it any less a part of the body. If the whole body were an eye, where would be the sense of hearing? If the whole body were an ear, where would be the sense of smell? But as it is, God arranged the members in the body, each one of them, as he chose. If all were a single member, where would the body be? As it is, there are many parts, yet one body.
The eye cannot say to the hand, “I have no need of you,” nor again the head to the feet, “I have no need of you.” On the contrary, the parts of the body that seem to be weaker are indispensable, and on those parts of the body that we think less honorable we bestow the greater honor, and our unpresentable parts are treated with greater modesty, which our more presentable parts do not require. But God has so composed the body, giving greater honor to the part that lacked it, that there may be no division in the body, but that the members may have the same care for one another. If one member suffers, all suffer together; if one member is honored, all rejoice together.
Now you are the body of Christ and individually members of it.

What I love:

that every part of the body of Christ matters and that we're all in this together, no matter how strong or weak we seem

Exodus 4:11 

Then the LORD said to him, "Who has made man's mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the LORD?"

What I love:

that God reveals a theological mystery here, taking credit for disability (i.e. He doesn't just allow it, He authors it, even if we don't understand the purposes)

Romans 3:23

for all have sinned and fall short of the glory of God.

What I love: 

that in this verse and all others, "all" includes people with disabilities... and the gospel applies to them as well as me, because all of us are sinners in need of a Savior

...and the one I don't use often.

Matthew 25:31-46. 

I won't paste the entire passage here, but this is a oft-quoted "least of these" story told by Christ. I don't have a problem with others using it, but I don't usually use it in special needs ministry trainings. Why? Well, I find that my listeners immediately identify as the ministers (us) and consider people with special needs to be the least (them). Considering that all of us are broken by sin and all - with and without disabilities - gifted to contribute to the body of Christ (see the 1 Corinthians passage above), it is often unhelpful to cast ourselves into separate camps. Instead of always ministering to "them," how about "us" and "them" acknowledge together that we're all the least of these and join together to worship the King of kings?


What are your favorites? Did I leave off any verse(s) that you find useful as a disability ministry leader or a special needs parent?

links I'm loving in disability ministry (on unexpected wisdom, being asked to leave church due to #autism, and faulty divorce stats)

A four-year-old with disabilities provides the best advice of all!

Finally little Krista walked over and said (I can still hear it today), "Guys, we need to pray about this."

The Tale of Two Churches

I was escorted out of a church service yesterday with my 9-year old autistic son. Despite the fact I had heard of this sort of thing happening on the news more than once, I never expected it to happen to me.

A scientist responds to 'Fetal Flaw'

Disability (I will not use the word defective) is not easy, but it is not a reason to kill a human being.

Book: Special Needs Ministry for Children

A new version of this good ol' special needs ministry staple (formerly titled Special Needs, Special Ministry; I reviewed that version here) just came out from Group.

Pastors: That Divorce Rate Stat You Quoted Was Probably Wrong

Christians aren't the only group to be misrepresented. Parents of special needs children are victims of this as well. But as pastors who are charged with proclaiming Truth (with a big T), we must also commit to proclaiming truth (with a little t).

Book: Your Special Needs Child: Help For Weary Parents

I'm not familiar with this book, but a publisher who was at D6 sent me a tweet about it after I had to leave earlier. Here's part of the description: "Steve Viars helps parents of special needs children to be authentic before the Lord about their pain, guiding them in thinking biblically about their challenges and God's promises." (I do wish the title used person-first wording, though.)

Sometimes, you have to pack up and go home. (On leaving #D62012 early)

I drafted this post while on a plane earlier today. I've gotten interrupted five times while trying to post it - once to find a small blankie that my five-year-old daughter always sleeps with, once to remind our three-year-old son that it's bedtime, and three times to calm our sweet Taiwanese-American girl when she cried out for "mama," checking to make sure I was still here. (Oh, adoption, I love you, but my heart hurts that our youngest hasn't always had a mama she can trust to be there.) 

Want to know something about those interruptions? I cherished every. single. one. Now, on to the post to explain why...

I hoped to connect with others passionate about family ministry this week while I spoke at the pre-conference and then hung out for the main conference of D6. I did the pre-conference part yesterday, and it was fantastic. 

Truly, D6 is an amazing conference in which people serving in all areas of the church – with children, youth, adults, people with disabilities, married folks, singles, two-parent households, single-parent households, married parents, unmarried parents, and the list goes on – join together in the conversation about what we can do to equip families to live out Deuteronomy 6, including these verse from that chapter:

“Hear, O Israel: The Lord our God, the Lord is one. 

You shall love the Lord your God with all your heart 

and with all your soul and with all your might.

 And these words that I command you today shall be on your heart. 

You shall teach them diligently to your children, 

and shall talk of them when you sit in your house, 

and when you walk by the way, 

and when you lie down,

 and when you rise. 

You shall bind them as a sign on your hand, 

and they shall be as frontlets between your eyes. 

You shall write them on the doorposts of your house and on your gates.

I hope to return to D6 again in the future. No other conference, in my opinion, is as rich and deep and biblically focused as it is.

But, as I write this, the main conference is going on, and I’m on a plane home.

Why?

Because my husband has a nasty cold. My oldest child had a fever yesterday. My youngest isn’t too keen on the mom she’s only known for two months going MIA. Thankfully, my son is doing well with it all, but he’s feeling the effects of everyone else and – quite frankly – I was homesick for all of them before I found out how life was going at home.

And while I can have that conversation about how to best equip families with special needs another time and while others can have that conversation without me, no one else can be wife to Lee and mom to Jocelyn, Robbie, and Zoe. My husband could have made it all work back home without me, and he didn't ask me to leave. I just knew I needed to when I considered that my choices were to stay and talk about how to best minister to families or to go home and minister to the family that is mine and that needs me.

While I wish I could finish the trip I had planned, I’m thankful that God has made it clear where I need to be and where the place of my first ministry is.

I don’t have to go home. I get to. 

~+~
I'd also like to add that I'm grateful for the D6 team who hospitably welcomed me and supported me through the sessions I led and who graciously helped me rearrange my plans to return home early. They don't just talk the talk; they walk the walk.