hallelujah, all I have is Christ

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

the special needs adoption question posed to the panel at Desiring God's disability conference

As I listen to Q&A panels at conferences, I jot notes while considering how I would respond to each question. After all, as a (woefully ill-equipped, were it not for God's grace) national speaker on special needs ministry and adoption, I am often put on the spot with questions like those posed to panels, and it's nice to think about answers when I'm not the one with the microphone.

At Desiring God's disability conference I attended last month, one question made me pause. Greg Lucas, author of one of my all-time favorite books Wrestling with an Angel (seriously, you should click on that and buy it right now. RIGHT.NOW. I'll wait here until you're done.), was asked about special needs adoption and whether a family should ever decide against it. The question posed was, "Greg, what advice do you have for families looking to adopt? Should a family ever not adopt a child if they suspect that child might have special needs?" This video starts with his answer (which is less than 5 minutes while the rest of the video continues the other panel questions and answers):



I paused because it's such a hard question to answer in a blanket statement.

I also paused because I am close friends with two women who each decided not to adopt Zoe due to her special needs but who were both instrumental in bringing her into our family and who are both now adoptive mothers to little girls with other special needs. If they had said yes, Zoe wouldn't be ours, and their sweet girls would not be theirs.

I love Greg's answer (and I love his precious family), and it rings even truer for us now. I love how he clearly paints with his words, describing how adoption provides for us a shadow of the gospel. Even more, as Zoe's mom and Robbie's mom, I love this quote:

Had I known what my son's disabilities were going to entail and what a cost it was going to be to me, I probably would not have gone through with the adoption. That hurts really... it's really heavy to say that. I would have come up with the excuse, 'Let someone else who is more qualified handle this child.' But the beauty of all that is this, and I'll say this to parents who are considering....adopting a child with disabilities, especially severe disabilities, you will never be equipped to do that. God has to equip you to do that. And the beauty of it goes back to the gospel, He will use that child to equip you to do that. He will use that child to sanctify you and to conform you and to make you more into the image of His Son. That's the beauty of adopting a disabled child. And, like I said, I see that now, looking back on that, but God has also used my son to conform me to the image of Christ in such a way that I'm a better man because of my son. I would have never chosen that for myself, but God in His wisdom saw that it was good and designed it that way.

And I would add that it's the beauty of parenting any child with special needs.

If I'm honest, I think we might have been too scared to move forward with Zoe's adoption if we knew Robbie would have epilepsy. It's nice in special needs adoption to feel like you get to control the diagnosis. In most instances - though not ours, since Zoe caught us by surprise and we were not in process when were contacted about adopting her - you fill out a list of special needs you are and aren't open to. Down syndrome? Heart defects? Limb differences? Cerebral palsy? Fetal alcohol syndrome? Autism? Hearing Impairment?

The list goes on. As an adoptive parent, you check yes to the ones you'd be cool with and no to others, (though you never know for sure if the in-country information is complete and accurate, so I advise friends considering international adoption to be open to just about anything, just as they would be if a baby of theirs in the womb turned out to have an unexpected condition).

We didn't know much about cerebral palsy before Zoe. And we didn't know a whole lot about epilepsy until Robbie's seizure on Thanksgiving Eve. God has been sufficient in both, even as we felt like we had a little more control over CP.*

(*Not that we had control over whether or not Zoe had brain damage, but it's easy to feel like we had some control in whether or not we would say yes to God when He made it clear to us that we should move forward with her adoption. We were scared of saying "yes" since we didn't know what it would look like to parent a child with CP... but we were more scared of saying "no" since we knew that would be acting in opposition to the plan God had for us. And how glad we are that we said yes! We're still learning a lot about CP, but parenting Zoe? That's easy peasy most of the time, since she's so dear.)

I am so thankful that God's timing allowed for Robbie's seizures to hold off until Zoe was home, and I'm glad God is teaching us that we are able to handle much more than we thought... not because He doesn't give us more than we can handle but because He has given us Himself so that we can handle whatever else He brings about in our lives, for our good and His glory.

isaiah 43:2-3

Robbie just fell asleep.

My time to rest and relax used to be once the kids were down for the night - always my boy last of all, because kindergarten exhausts Jocelyn and life as a baby with CP makes for an early bedtime for Zoe.

from stitch by stitch

Now?

I'm not sure anymore when my time to rest and relax is.

The highest risk time for seizures is the first two to three hours after he falls asleep. Because his tonsils are ginormous and probably should be removed (but we were waiting to get a bit more settled with Zoe first), he wakes up a few times a night. Each time he falls asleep again? Yep, it restarts the two to three hour high-risk period for a seizure.

I can't do think every time, but last night - as Lee tended to our little four-year-old friend who is crashing here for a few days and who has a stomach bug - I decided to just crawl into bed with Robbie and monitor him that way.

But I've resolved one thing.

Fear sucks.

So I'm not giving into it. Because you know what? I knew SIDS was a possibility with each baby of ours, but I didn't totally freak out about it. I took some precautions, I trusted God, and I slept as much as the precious babes allows.

And you know what else? I know SUDEP is a possibility. (That would be Sudden Unexplained Death in EPilepsy.) But we're not going to totally freak out about it. We'll take precautions, we're trusting God, and guess what? We're sleeping as much as we can, with a baby monitor at full volume and a seizure monitor that we'll be ordering soon.

from Shine Design

God'll be up all night, so I'm trusting Him in this and in all other things.

G'night.

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?

seizures are hard, but friends are good

I started this post earlier today. It was going to be "seizures are hard, but illusions of control and the temptation to fear is harder." Someday soon, I'll write that post, because I do want to share what God is teaching me about who is in control (hint: not me) and how much fear can rob from me (hint: a lot).

But y'all.

I've been so encouraged by texts and emails and comments and meal offers and visits and calls. Y'all sure know how to love a girl when she's down.

If that wasn't enough good news for the day, Lee realized today that we have plenty of money in our health savings account to cover Robbie's seizure monitor, so we're good on that. He realized that news just as I was being offered a hefty financial gift by a friend who had been saving money for something else but felt moved to offer it to us instead for a seizure monitor for Robbie.

Oh, my heart. Such generosity.

And? Two neighbors have offered to be on standby tomorrow night to stay with the girls if Robbie has another seizure and needs another hospital trip, freeing me up for a sweet evening with the ladies from my Bible study group.

Blessed and humbled and encouraged.

By you.

Thank you.