FAQs about our new arrival in seizure-land
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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?
What do you need?
Any other questions? Shoot. I'll answer later.
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.