|Sarah, 6 months in a few days. Trooper of sister related hospital visits.|
I wouldn't blame you if you've given up on following along my silent space these past few months. If you follow along on social media at all, you may have a bit of an understanding of some of the things that have been going on and keeping me away from here. If not, here's the "short" version along with some of my miscellaneous musings and reflections on this year in general.
My last post here, was October 5th. On October 9th, Lucie had a brief seizure after 10 months seizure free. She had several more that week, resulting in a concussion on the 12th. It was our first of 4 ER visits for seizure related injuries in the coming months. It seemed that no matter what we did, the seizures just kept ramping up. From 8 in a week, to 8 in a day, to 8 (almost) in an hour!
Finally, the week before Christmas (was that just last week?!) we were admitted for a video EEG to see if they could learn anything new about where these seizures were coming from and if there was a better way to treat them.
Boy did she decide to give them a lot of data!
|Shortly after beginning her overnight EEG, still in good spirits.|
But she had to stay in the hospital to do it, to watch for side effects of the new medications being started too quickly and to rescue her from any persistent seizure activity due to stopping the existing medications.
The next 24 hours were extremely rough. At one point she had 7 seizures in an hour and had to be treated with an IV dose of an intense medication that basically made her completely out of it for over 24 hours. For all of my birthday (the 23rd of December) she could not sit up, walk, or talk. She couldn't tell us when she needed to go to the bathroom or what she wanted to eat and she could barely feed herself.
It was utterly horrifying and the worst part was, they really couldn't tell us if this was for sure the medication or if it was a progression of her epilepsy. She had started having the regressions before she went into the hospital so it was hard to sort it all out.
I did not think we would be home for Christmas.
At this point, I broke radio silence on our epilepsy crisis to beg for prayers on social media.
Before I go any further on what happened next, I have to flip back to early 2017 to explain why I waited so long to say anything. When we moved to the small town we live now, many local people began following our family in this space. It was always awkward (blogging time is not real time) and I just learned to get by with it as best I could. When I announced my pregnancy with Sarah (We Said Yes, God Said Epilepsy- which wins the award for top post of 2017), I was nervous what the response would be. From an online perspective, my concern was misplaced.
In real life was a different story.
One person from our parish accused/warned me, in very blunt terms, of needing to be careful about being seen as melodramatic and attention seeking. Another couple felt fit to tell me why I was taking the wrong approach to treatment. The priest at our parish at the time (he has now moved, as have we) even made a comment that I don't think had anything to do with my post but just sat completely wrong. As a result I decided to separate the "personal" side of our family and the "professional" side of my blog and escaped to Instagram instead of Facebook. Maybe people are still following and judging-along with me there, but so far at least they have kept their mouths shut.
With the exception of Sarah's birth, I mostly kept "on topic" here in this space, with lots of Montessori posts and newsletters. As a result, what everyone had told me for awhile would happen if I "stayed focused" happened. I had my most successful year ever of blogging in 2017. It turns out the blogging experts do actually know what they are doing.
And then Lucie, started struggling. I didn't have any neat Montessori posts to share, because in all honestly we haven't done five minutes of school in any form since October. We had been planning a move to the country to farm/homestead and even had an offer accepted on a beautiful piece of land we had nicknamed Euphrosyne Valley. (St. Catherine of Siena's family nicknamed her Euphrosyne which means joy-filled in Greek. Since our Siena was definitely our joy, we thought it was a perfect way to bring her with us to a new home.)
|View from the hill overlooking our almost land.|
As a result of Lucie's intense needs, we prayerfully decided to pass on the property. A questionable inspection allowed us to have our earnest money returned and we took our existing home off the market.
We also had to put our dog down because something (I suspect the seizures) made her go nuts this fall, pooping all over our house. She started growling at Tomas if he even came near her. The only people who will re home aggressive dogs are people who want to do terrible things to dogs. We tried to find someone loving, but failed.
In the meantime, the blog sat. I had no time to blog "properly" and the only thing I had to offer was more of my "drama".
So many times, I thought about breaking the silence but I just didn't know what to say.
Life kinda sucks right now. Again. Thanks for reading.
Send copious amounts of coffee and Dr. Pepper.
Maybe a wet nurse.
Instead I stayed quiet and took care of my family in the best way I knew how. I appreciated that I wasn't dealing with backlash for being a real person when I went to the grocery store, but it was also lonely. When you can barely leave your house, it turns out having an outlet of some sort is a good thing!
When I finally reached out to my various followers for prayers, God came through for us in a big way. Lucie came home from the hospital Christmas Eve. She came home with a walker and still uses it when she is having a rough time (often in the mornings), but is walking and talking better every day.
Her Lucie spunk is back.
But she is still seizing. Half a dozen times each day or so. The new medications are still not working and we will be starting a seizure control diet that is known to really help kids with medically refractory epilepsy (not controlled by medications). When we finally have seizures under control (I'm still praying for that and hope you will as well), we can start to sort out which of her regressions this fall are permanent due to seizures, progressive due to an underlying condition, or (hopefully) temporary.
|Best Christmas present ever, even if she didn't feel up to much celebrating.|
Here's what this whole thing has taught me. Yes, I do have the knowledge and skills to "hang with the big boys" in the blogging world. I can be a "successful" Montessori blogger.
But I don't actually want to be. There are plenty of excellent people who can share the best Montessori Christmas gifts for your (x) year old child. I care too much about the Montessori methods and philosophies to call myself a Montessori blogger because I don't want to represent Montessori poorly (there are plenty of people doing that already too).
I started as a Montessori homeschool blog, but I sometimes wonder if I've ever really been that.
What I really am is a Catholic blogger and author who happens to homeschool her children and incorporates Montessori methods when she can.
I also published a book in 2017, remember that?
I would love to write more about pregnancy and infant loss. There is more to be said. A voice that doesn't silence with the birth of more children is needed. There is always someone talking about a recent loss, who is still talking about loss that happened 10 years ago?
Before I started staying home with my children, I used to do speaking- generally in-service presentations and trainings for preschools and childcares. Part of me thinks, looking forward to 2018 and beyond I might like to do that again someday. On my terms, in a way that works for my family and doesn't demand SEO and a certain level of post frequency.
Maybe the pregnancy and infant loss could dovetail with that? Or maybe a way to keep sharing the beauty of Montessori at home? Or maybe just how-not-to-lose-your-brain-or-faith-when-everything-that-can-go-wrong-does-go-wrong?
I've been spending some time in prayer about what 2018 will look like in this space. I have a vague sense that my Montessori homeschool blogging days are coming to an end, although I have no intention of changing how we school... when we school (so still plenty of Montessori on social media perhaps?)... or closing my Teachers Pay Teachers store.
We know very little right now about what this next year will look like for Lucie and obviously anything that happens here will be intrinsically tied to that.
Whatever 2018 brings, I admit to prayerfully hoping that it is a little less weird than 2017!
A new chapter is beginning.
I'm just not sure if the page is about to turn or it already did and I'm still trying to catch up.