At times, I swear our life is a soap opera. It’s like a strange telenovela written in a mold-infested basement by an author who lives off caffeine and cigarettes. So many unexpected twists and turns — not all of them pleasant.
The first half of Saturday was like a dream come true. Eloise was happy. Really really happy. We had so much fun. Giggles and grins — this kid was so full of joy.
Since the week had gone so well, I finally had the mental capacity to start trying cloth diapers again, so I put her in a set. On top of that, I had a package I needed to pick up in town and was starting to feel like she might actually do okay at the grocery store. So instead of asking Brian to go for me, I gave it a try. I put Eloise in her merino wool winter gear, waved goodbye to Brian, and drove the two of us 10 minutes away to run my errands.
When we arrived in town, I took a deep breath, strapped this adorable kid into the carrier and held my breath to wait for her to start screaming. But, after a few moments, she still wasn’t fussing — despite the fact that I even had her facing me (which, historically, she’s hated). I was astonished. No screaming. No crying. Almost no protesting.
I felt such pride. “She’s growing up.” I thought. “Finally, her awake time isn’t fully consumed with eating and I can maybe, just maybe, start to think about going places with her on occasion without feeling absolutely overwhelmed with the logistics of how we’re going to make it work.”
As I walked through the aisles, I started to tear up just thinking how much joy she brings in our life. I felt like I was carrying a secret — none of the strangers around us could possibly know how special she is and what a big deal it was that I was with her on her 3rd ever grocery store outing ever in her life. It went so well that we went to 3 stores in an hour. I only had to bounce and sing “wheels on the bus” once. Incredible.
It felt so good.
Plus, she was just so darn happy that day. No crying spells. No random fussy episodes.
But our life is weird. It often feels like we’ll have a short period where we can breathe easy — things are going well, we’re starting to feel “normal” and like maybe a lot of the worst is behind us for awhile. So we begin letting our guard down. We stop scanning for what could possibly go wrong and focus more on how right things are going.
Then, boom.
Life often takes a turn for the worse for us.
That was this week.
Finally, finally it felt like we were getting back to normal. Brian and I were making a schedule again and figuring out who was doing what. We were both doing physiotherapy with Eloise again regularly. She was eating well and (mostly) happy. Friday I had the time to go through and actually pack the hospital bag Brian and I put together in case of another emergency trip.
And Saturday — what an absolute gift. I even posted on her instagram account how great things were going that day.
Then, boom. A seizure out of nowhere.
But, phew, thankfully it was short.
Then another.
Then another.
By the third seizure of the day, I started to get a bit worried. Before, with her seizures, they’d come along with a tooth coming in (6 of them), or an illness (1 of them), or a fever (2 of them). But this time I couldn’t see absolutely anything wrong. That was scary. Because if she was getting seizures and there was no reason? We might be in for some dark times.
Then she had a fourth seizure as I was brushing her teeth for the first time in her life. (With all the chaos and problems we have to tackle, I missed the basic information that you’re supposed to start brushing your baby’s teeth as soon as the first one comes in.)
That was it. I decided she was going to sleep in our bed, right next to me so I could wake up if anything happened in the night. Thankfully, though, Saturday night passed with no more seizures.
But Sunday? She woke up and quickly began screaming inconsolably for almost 30 minutes. That wasn’t normal anymore. On a whim, we decided to take her temperature and discovered it was at 37.7 (99.86). So she got her first dose of paracetamol (tylenol) for the day.
That at least gave us a reason. Maybe she’d just picked up a small virus from the hospital when she and Brian went in to see her doctor and a few specialists on Friday. And maybe that was the trigger for all this seizure activity — at the very least we could feel some peace that her seizures still follow a clear pattern and can be predicted. At least in restrospect.
Still, even with fever-reducing medication, on Sunday she had 4 more seizures.
But, like a soap opera, it couldn’t just be that our precious baby girl had 8 seizures in two days, but more stuff had to go wrong.
- I exploded a boiled egg yolk in the microwave Sunday morning.
- Winter dumped nearly half a meter (18 inches) of snow on our car and driveway in 24 hours. While it was beautiful, we were out of food in the house, so I needed to shovel everything in order to get to the grocery store.
- Not realizing our shovel was metal-tipped, I cleaned off the hood and windshield and found out it was possible I might have accidentally scraped the car.
- Brian himself warmed up food with boiled egg yolk in the microwave. When he went to stir it, the yolk exploded in a hot ball of fury all over his face, our counter, the bottom of the shelf above, our coffee mugs, the ceiling, the chairs, the pillows, the table, her eating chair, the heat pump. Absolutely everything.
- After just remarking to myself earlier that day, “Wow, it’s so nice it’s been so long since I’ve had a clogged duct,”, I got one after my last pump of the day — right before I went to bed. And needed to stay up to do my ice-heat-handpump-ice-heat-handpump ritual.
- Just as I was about to start handpumping, Eloise woke up for her first feed of the night.
- After she ate a bunch of milk, she puked up a bunch of it. (Thankfully, I had her covered in a big cloth that kept her PJs and sleepsack dry.)
- Brian ended up waking up to help. He was concerned about laying her down right away after eating so much milk, but I told him it no longer mattered and she’d be just fine. So he laid her down and, within minutes, she projectile vomited all over my pillow, our sheet, the mattress topper, and our velvet-covered headboard. So, as midnight Monday struck, we were both up cleaning our bed furiously, hoping that the vomit smell didn’t seep in too quickly to never go away.
With everything that went wrong, it was almost funny. Like the movie “Stranger than fiction” maybe the author was writing both a tragedy and comedy both.
Regardless, though, gosh, this was not what I’d imagined our week would go like.
But with pain and trials often come revelation
It’s true, suffering often brings us our greatest life lessons.
On Saturday, after her second seizure, I wrote about what I’d learned in the hospital — though we can’t always take away our little one’s pain, we can be with them through tough times. (Which is probably even better for them.)
But then she had two more seizures and I needed more. Both Brian and I had shed more than a few tears that day, worried about our little girl. I needed something to re-frame what was happening — to give us some sort of hope or comfort.
So Saturday, after we put Eloise to sleep, Brian and I curled up together on the couch and we did as we often did in times like this — we prayed and listened together.
Many people say that, during a seizure, the person having it doesn’t remember anything. It’s like there’s a hole in their memory during that time.
As I prayed, that thought came to me alongside one of the beatitudes, “Blessed are the poor in spirit: for theirs is the kingdom of heaven.” Matthew 5:3
Suddenly, that scripture took on new meaning. Maybe that’s why there’s a blank spot in someone’s memory during a seizure. Maybe it’s because their soul spends time in heaven during that time — a blessing in exchange for the suffering their body goes through.
It seemed far-fetched and, obviously, there’s absolutely no way for me to know for sure that
- Heaven exists
- Eloise visits it every time she has a seizure
But still. Later I googled something around the lines of “epilepsy” and “visits to heaven” and discovered that, indeed, there have been studies because many people, non-religious people, report having hallucinations of visiting heaven during a seizure.
Whether these visits to heaven or speaking with the divine are hallucinations or real, there’s no way to know. But it encouraged me — maybe I heard right, maybe there really is some truth to that.
Regardless, the thought brought me a crumb of comfort. If there is a heaven, and if Brian and Eloise and I get there some day, then she might be the one to teach us a little something. Because she’s had the blessing of spending time there before.
And that’s a beautiful reversal.
I will say, though, extra blessings for her or not, I’m just hoping these seizures stop for awhile. Thankfully, we haven’t had any more today and they’d already taken her blood on Friday to make sure the medication concentration is right. So we’ll see.
We’ll keep hoping and praying. And trying to avoid getting any more bugs or illnesses.
All our love and hugs,
Mallory, Brian, and precious little Eloise
Eloise The Tiny Fighter 