Oh life.
Just Wednesday I wrote:
What do you do when several of your therapists and your builder are all on vacation at the same time? You decide last minute to drive 2.5 hours to the other side of the country for a 5 day family work-cation in Tartu, Estonia! Where Brian and I continue working as usual, but from our company satellite offices.)
We drove down yesterday. Thankfully an old friend kindly let us stay at his place since he isn’t here this week. (There’s a beautiful wall of windows in the back of the house that just stare into humongous trees. It’s breathtaking.)
Already it’s been so good. We met a friend of my friend and her puppy. Eloise visited her very first restaurant for breakfast this morning. I went to my office and Brian stayed home with E. Then this evening we ordered food to eat outside on the deck. Funny enough, Eloise had no interest in the pasta we ordered her but she fell in love with my pizza — mozzarella, thin Canadian bacon, pistachio cream, and roasted cashews on a white sauce.
And to add to the wonderful stuff happening, a wonderful human got us connected with a local fellow who, if we really decide we’re getting a dog, can help us figure out the type of dog Eloise needs, help us find the right one for her, and then train it as a therapy dog — because that’s what he does for a living.
Life feels so good right now.
From our facebook group and Eloise’s instagram account
Then Friday I got a video message from Brian while I was working from my company’s Tartu office,
“Hey, I’m gonna try to capture this. She’s doin’ something weird — like you almost just saw it there for a second. Like she’s trying to bite her fingers and then just starts shaking.”
I watched the video of this new thing happening with Eloise and my stomach dropped. Something was wrong. Very very wrong. And suddenly everything I was trying to concentrate on just left my mind and I found myself replaying that image over and over again, my concern growing.
After Brian reassured me the shakes had stopped, I felt a little better and Iwent on with my meeting. He’d figured out pretty quickly that if he distracted Eloise — like taking her outside or dancing with her or giving her a teething toy — that the issue would stop. By the time I left work and learned they hadn’t come back, I felt a lot better.
But Saturday morning she had a few of the shake episodes when she woke up. Then a few more at lunch. Then a few more as we were leaving the Science center. Then quite a few more while she was trying to fall asleep.
Since our neurologist was on vacation halfway across the world with spotty internet — I decided not to wait for her response. It was time to ask our online community for help figuring out what the heck these shakes were and if we needed to take them seriously.
Quickly, I got my answer. Those shakes? They were most likely myoclonic seizures.
My stomach dropped and my panic soared.
No. No no no no no no no no no.
No.
No.
NO.
She’s only had 1 seizure in like 3 months. This can’t be seizures. No. She was doing so well. I was just feeling grateful she hadn’t needed to be hospitalized in 6 months. I was just beginning to daydream about being more daring and going on a nature vacation outside of the country. I was just feeling confident that, with her medication, that maybe her seizures would be way more controlled than almost any other kid I knew like her.
As I stared off into the distance, sitting on the couch next to Brian — 2.5 hours from home — watching the light slowly fade into darkness, my heart sank. I felt sick.
“Brian. She’s having seizures again. If we count each of those shakes as a seizure she probably had 100 on Friday. Maybe 50 or more today. I just. That CANNOT be good. I am so worried. Can we pray?”
So we did the same thing we normally do in situations like this.
We curled up on the couch next to each other and then first looked for a memory that made us feel warm and fuzzy. That was easy — we’d had such a great day with Eloise. (Or, well, it had been a great day before I realized she had been having seizures throughout it all.) But I tried to focus on those happy memories and then see if there were any thoughts that would come that could give me new perspective.
After a few minutes of silence, Brian told me the thoughts he had. His thoughts were nice but, frustratingly, I felt just the same as before. When I’d tried to hear for anything inspiring, all I could notice was my worry. It was too big and too scary and too overwhelming. I needed something more.
So I closed my eyes and pictured the part of me that was upset. And then I imagined Jesus.
“My heart is broken. I don’t mind that she will be disabled for life, but it makes me feel so helpless and scared when it looks like her brain is broken and I cannot do anything to fix it.” I saw myself crying. Then, I saw Jesus gently walk over, wrap his arms around me, and cry with me. “It hurts my heart, too,” he whispered — his voice full of compassion.
In my imagination, we stood there for awhile holding each other — two humans comforting each other in a time of distress and sadness. Then, as I looked up, two thoughts came.
“My father and I have been working with doctors for centuries to cure things like this. It will still be some time before the complete cure is discovered, but we have come a long way from where it used to be. There are medications that can help.”
That felt true. And beautiful. And encouraging. Maybe there wouldn’t be a cure yet, but there were meds we could try that would likely help.
“Even though Eloise is in pain, you and Brian are always with her when something happens. That means she has never felt alone a single time when she has been hurting in life. She knows she is loved.”
And, wow, that felt true. And beautiful. And encouraging. Yes, Eloise would still have to face pain, but she would never have to face it alone.
As I meditated on these thoughts, I felt peace wash over me. And, just like that, my grieving and sorrow felt complete — at least for the moment.
I opened my eyes and wiped away a few tears and looked over at Brian. He’d pulled out his phone and begun playing some of the videos from our day on his phone. I leaned over to watch with him.
As I saw the images from the day replaying, I slowly began feeling like myself again. The scenes filled my heart with such happiness. I saw our adorable almost-18-month-old living her best life. I saw us doing something big and brave as a family. I saw me enjoying little things that maybe many others take for granted.
And I realized something.
This last minute work-cation we went on? It was a BIG deal for us. Just 2 months ago I didn’t know how long it would be until we could ever have something that resembled a family vaction. But we did it! We got here! And not only did we get away from the house, but we’ve had so many incredible experiences together just in a few short days.
These new seizures suck. The feelings of fear and not knowing what will happen suck. It’s important to give myself permission and space to feel those feelings. Period.
But, at the end of the day, I don’t want our incredible time away to be defined by my fears that came up — I want our time away to be something I remember as a time of triump and joy and even gratefulness that we were in the same city as the medical team that knows Eloise. Just like I don’t want Eloise to be defined by her diagnosis, of what she can’t do — but rather to be known as the incredible little being she is, a kid that brings so much happiness to our lives.
So today we brought Eloise in to her children’s hospital here in Tartu just to get the opinion of the medical staff on call. (I keep forgetting that Estonia is NOT America. I don’t have to be afraid of an emergency visit bill. I don’t have to be afraid I’ll lose my job if I take off for Eloise’s hospitalizations.) They treated us kindly, examined Eloise, took some blood to make sure all of her levels were okay and she wasn’t fighting an infection (they were all fine and she’s totally healthy), and then asked us to come in bright and early tomorrow (Monday) morning for a short hospitalization to get her an EEG and see if there is anything else they should do for her.
Sure, things didn’t go quites as planned. Sure, our 5 day work-cation will turn into a 7-8 day work-cation turned hospital stay.
But, really, this the absolute best time for all of this to happen — while we were staying just a few minutes down the road from Eloise’s hospital and team of medical professionals who know her. We’re in a safe place, with a safe team, and, really, I am determined that these scenes full of warmth and joy will be what colors our time here — not the fear of the unknown.
Which is why I will be writing very soon — a summary of how incredibly healing and wonderful and joy-filled it has been to be away from home these 5 days with Eloise experiencing things we thought we might never get to experience with her.
Thank you for all your love, your support, your thoughts and your prayers.
We WILL make it.
Mallory, Eloise, and Brian
Eloise The Tiny Fighter 
❤️ 🙏❤️
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