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.

FAQs about our new arrival in seizure-land

Do you want to talk about it?
Yes. It's hard to talk about it, but yes, I really do want to do so. Talking helps.

And, honestly, right now it's front and center on my mind and heart, so it's hard for me to have a conversation without talking about all that we're trying to process right now.

How are you doing?
I don't know.

No, I'm not just saying that to dismiss you. I really don't know. I'm just numbly taking the next steps we need to take (and occasionally bawling my eyes out when I'm alone in the car), thankful that God is in control of it all.

So it's good news that Robbie will grow out of these seizures, right?
Right. He has a 70% chance at outgrowing them around puberty. (Yes, my friends, I'm the only mom of a boy who is really, really, really looking forward to puberty now.)

The answer above is my standard one. But the one I don't say out loud but just think in my head? Here's that answer: This "good news" doesn't feel so good when it means that we're looking at a decade of seizures.

What can we be praying for?

• For the tests this week and next to go smoothly and provide clear next steps for treatment. 
• For me to be able to sleep instead of sitting up all night, watching the video monitor to see if he has another seizure and for my health, since my chronic conditions usually do better with lots of sleep and low stress. Ahem. So, basically, in opposite conditions than the ones we're rocking right now.
• For Jocelyn not to feel lost in all the attention paid to her siblings' special needs. 
• For Zoe's therapy needs not to get set aside as we focus on what's going on with Robbie.
• For Robbie to continue to be seizure-free, except perhaps during the 48-hour EEG on December 12-14 (during which a seizure would be helpful so we can capture exactly what's going on in his brain when he seizes), and for him to continue to sweetly trust us through all the tests.
• For us to find a more affordable option for a seizure alarm, which is a thing for Robbie's bed that will alert us to a seizure and help us sleep, but it isn't typically covered by insurance. At $700, it's a bit steep, even if we can get the $70 discount we think they'll offer... but if that's the cost to be able to sleep again, we'll figure out how to pay it, by golly.
• For Lee and I to truly connect as husband and wife instead of simply going into survival mode (which is where our marriage lived for the first two months after we brought Zoe home and, let's be honest, that period of time was downright ugly for our relationship, so we'd rather not go there again). 

What do you need?

• Sleep.
• Tips on where to find cute pajamas because nighttime seizures = nighttime visits to the hospital. I can't make that scenario any better, but I can make myself look cuter in it, which is almost the same thing. (If it helps in giving tips, I like loose pj pants and matching tops - like these or these but not like these since I don't dig button-downs unless they have an obnoxiously fun print like these.) I've been wearing the same ratty pjs for a decade, so I have no clue where to start in looking for new ones that don't cost an arm and leg - tips?
• Hugs.
• Coffee. (My current loves are Starbucks Skinny Peppermint Mochas, Sola Shakes, and Jubala Almond Lattes. Who's up for a coffee date?)
• More hugs.
• Reminders of Bible verses that assure me of God's plan and purpose in all things and His love for Robbie and me.
• Texts and calls and messages and emails and comments to let me know that you care. (I cannot tell you how much those helps while we were in the hospital.)
• Meals, if that's how you like to love folks, since no sleep = no cooking initiative and a $700 seizure monitor on my wish list = no spare moola for takeout.
• And sleep.

Any other questions? Shoot. I'll answer later.

still true.

I didn't want to be discharged from the hospital a week ago.

As long as we were in the hospital, I had someone with more training than me there to respond if my boy had another seizure. Out of the hospital, I had butt valium.

Okay, so it's called diazepam, but it's technically Valium, and you administer it rectally to stop seizures lasting longer than five minutes (waiting shorter ones out), so we call it butt valium around here. What can I say? We're a fancy and refined people.

We left the hospital knowing that another seizure was 50/50. I didn't like those odds, but I knew the odds would move in our favor every day until a seizure-free year from now when his odds would go back to the typical 1-2% of any other kid. As I repeated that to encouraging friends over the past week and heard stories of one-time seizures that never happened again among family and friends, my spirits were buoyed.

We'd get through this. We'd be okay. 

But now I know that the next seizure is no longer "if" but "when." The title of Tuesday morning's blog post was "Will he have another seizure? We just don't know;" by Tuesday afternoon, the answer changed to "yes, yes, he will." For the first time today, I had to tell a stranger - the WakeMed nurse calling for Robbie's MRI next week - that my boy has epilepsy. And my voice broke as I said the word. As I explained to her that we know the drill since this is our third sedated MRI for a child, my eyes welled with tears because, if I'm completely transparent with you, it's not okay with me that I've become so comfortable with the sedated MRI procedure.

But you know what?

We'll get through this. We'll be okay.

Not because we're great. We're not.

Not because we have answers. We still don't really.

Not because seizure meds - if they're necessary - are good and precise and easy to figure out. They aren't.

Not because we like our doctors a lot. Even though we do.

It's felt like a terrible, horrible, no good, very bad week. For example? In no less than eighteen hours, I came down with a nasty head cold, my boy was diagnosed with epilepsy, and I was hit with a vicious stomach bug. I'm still reeling from all that (and running a fever each afternoon).

But the sweet thing about knowing Jesus is that even when I feel terrible, I can cling to someone who is wonderful. Even when life seems cloaked in horrible, we know who is still in control and has chosen this to be woven into His story of ultimate goodness in our lives.

In my last blog post before the word epilepsy was added to my boy's medical record, I included this favorite verse of mine: "And my God will supply every need of yours according to his riches in glory in Christ Jesus." {Philippians 4:19}

Because that's still true now, we'll get through this. We'll be okay.