It’s our first day of (home)school today, September 4.
It’s also my Namesday. My chrismated name (or Christian/Baptized name, as Westerners might be more familiar with) is Hermione, for St. Hermione of Caesarea. As most Orthodox will tell you, the Saint choses you…mine certainly did. While a catechumen waiting for my Chrismation, I could not decide which was the wisest to chose and so told my priest. The three saints’ names I had narrowed the list down to were written on strips of paper, left under the Gospel throughout Liturgy, and then pulled at random by lots by my Priest after the service. Anyone that knows me well knows how much I resemble (moreso in temperament and thirst for knowledge that physical appearance) Hermione of the Harry Potter books, so it was rather a sweet, yet funny thing that the original Hermione chose me. (Hermione in the books is named for none other than my St. Hermione; J.K. Rowling often referred to Foxes Book of Martyrs for names. It’s also where she got the name for the hospital- St. Mungoes. There’s a few more Easter eggs like that throughout the books.)
It’s also the ecumenical new year, as the new church year started on September 1. My parents came for a visit over the weekend.
Just a new page all around, really.
It has been a sweet, quiet day.
I’m not sure what September holds for us yet. Looking back over August, I feel a sense of relief. It felt like the first month that we really and truly found our footing in many areas after months- years, really- of upheaval. Doesn’t feel like we’re running frantically from one plate to another and tossing them, just trying to keep it all in the air.
I’ve been looking back over August as I look forward to September and establish my goals, and I thought I’d drop some of those thoughts here.
Things that we did well in August:
– our food prep/kitchen/grocery budget flow. (This has been a huge goal for me for at least two years, so to see some progress feels SO good.)
– staying in the moment. One of the unfortunate side affects of medical trauma-rama is focusing *in* the moment, because it feels like there’s always something barreling down at you and also that you barely stood up from the last thing that ran you over. It gets hard to just enjoy the moment and not think about it all. I feel like we really truly did this as a family in August, just enjoyed each other’s company and celebrated the every day things. That’s with my husband having a kidney stone that necessitated an ER visit about mid-month. I feel like we did the right things to recover and didn’t rush the process and trusted our intuition as to what was needed both for him and for our family. Trusting that voice is hard after what we’ve been through, and I’m really happy to report that we did. And James is definitely on the mend!
– working hard to get all the past-due and collections medical bills PAID in full this month. It was so unbelievably squeaky tight in August because of it, but it is SUCH a relief to start September in the black. There was a huge paperwork snafu when the two medical systems here merged into one (we had bills at hospitals in both networks) and the new merged network sent a bunch of bills repeatedly to a decade-old address right after the merge. I found it odd that we had stuff showing on our EOBs from our insurance but no bills were coming. It took a solid month and a half and a billion phone calls to get it straightened out and then we got slammed with a number of collections as soon as they got the right address dating all the way back to the merge in January. No chance to negotiate. It was so frustrating and humiliating, especially when it was the new medical system’s fault in the merge, and they had correct phone numbers for us the whole time. (Sigh.) But it’s over with now! We still have larger bills set on payment plans that are okay and weren’t affected by the merge, but no more collections! Yay! That’s huge. The more important thing to me is that we didn’t just survive while doing it this month, we thrived on the challenge of it. It didn’t knock the wind out of us like it has often done before, keeping us up at night. We did our best each day and slept well. I don’t think the kids really noticed a difference one way or the other, and that is really important to me! They don’t need to be worrying about it. It’s been a stressor for all of us for so long that having healthier responses is BIG.
Things that I’d like to focus on for September:
– building up our pantry. I have planned to set in some ‘winter stores’ like a proper squirrel in September. We’re already halfway there on the fourth day of the month: my parents gifted us a membership to a bulk store with better prices on our bulk daily needs, we found an even cheaper place locally for 50 lbs of rice and oatmeal than I had originally researched (score!), and there was enough wiggle room in the grocery budget to take advantage of both. Some of the things we still need I am researching for best prices, and we’ll finish it up in the second half of the month. The fact that I can even say (and know!) that there is space in the grocery budget is HUGE! YAY! I want to work on baking and freezing some meals, too.
– keep pounding away at the medical bills. Again, this is already showing fruit- James and I both have some side hustles going, and we’ll able to put some extra towards that goal this month. This is the first month we’ve felt comfortable taking on extra work, knowing that it won’t burn us out or unbalance our rhythm.
– more art, more art, more art! I’ve been working on a collection all summer called Bird-In-Hand. It is a culmination of many quiet, healing moments of painting and drawing this summer, and God willing, I’ll introduce it the world on or around September 15. With the return of our school rhythm, I’ll have more time to devote to art, and I am very excited about that. I have so many things going that I am always sorry to put away and having more focused time will be wonderful!
Things I’ll leave behind:
– giving up. I tend to shut down when I feel overwhelmed instead of finding some practical steps forward away from whatever it is that has me so locked down. Sometimes it’s just a simple thing like getting dressed. Making good food for myself. Calling someone who might know the answer to the quandary or has similar life experience. All small things, but they aren’t standing still and not doing anything at all, and that’s where the forward movement comes from. Step by step.
– crappy food. And crappy people. Both seem to be hitting me on the same level lately. I want to invest my time in life-giving things and not life-taking things. Stronger boundaries and fences! And better food, for crying out loud. My body deserves better. So does my soul!
– escapism. I notice that I start to check in to social media and mindlessly scroll when I am feeling overwhelmed. I am checking in with myself when I pick up any technology as to whether what I’m about to do is life-giving or life-taking. The answer is usually pretty obvious to me when I ask that- I know when I’m using it as a tool towards something that gives me life (like art tutorials or dear friends’ thoughts or looking up a recipe I’ve forgotten, balancing the checkbook, writing blog posts etc.) or whether I’m just escaping from the noise of the kids or the school day or whatever. One is usually done with intention, and the other is done mindlessly without a goal in mind.
How about you?
It appears we have another interesting summer on our hands. So much has happened already, and you can read all the updates here, at our medical fund page. I try to remember to come here and post Handbook entries, but even that hasn’t happened. You can always see those over on Instagram. I keep trying to do them even in the midst of it all; it helps calm and center me, helps me keep my peace.
It has been forever, dear ones. I know. I was so in the thick of living it that I couldn’t pause here to tell you all about it, but as it is all coming to a close now, I can slip in here quietly with my tea and fill you in on all the news.
Where do I begin?
Ellianna passed her sixth birthday, as healthy as her new healthy can be. It was a strange feeling, to be honest. So many February days past have been filled with hospitalizations and stress and illness. I do think we finally got to the bottom of all that troubled her, God willing. The cycle of her illness has evened out and almost disappeared (if you didn’t know where to look)- meaning that we finally, finally found the sweet spot with her treatments and diet. Glory to God!
Josiah, too, continues to heal. They stepped back some of his medication, to evaluate if some nerves have started firing, and so far, so good. We won’t know for sure until his next colonoscopy (when they replace his c-tube), but we are all curious to see. He may or may not have to have surgery this summer; he’s reaching an age where they may be able to replace his tube without putting him under, but as he also needs to have some exploratory surgery for some other things, they will probably do it all together all at once. All that aside, we have definitely reached a new season with them both, a normal, an expected path; they will always have these chronic life-long incurable illnesses, but their illnesses no longer define them or us in such a profound way as they have these last few years.
The real news, however, and the reason that everything suddenly got so quiet- was some really tremendous changes for us all. James found a much better job back in our home state of Tennessee, rather unexpectedly. Given the children’s medical needs/insurance (we can’t be without it!) there could be no downtime between the two jobs, and we had to move in basically a week. Not only did we manage to do it, we actually had space left in the truck! Four years in pursuit of minimalism definitely paid off. It was a wonderful feeling, and it was a blessing that we could move so quickly because of it.
For the first time in the history of our marriage and family, we split up for an extended period of time, which felt very strange. Some of our children still had things going on in Virginia; some doctors appointments, some birthday trips (Swan Lake! The Symphony!) gifted by the grandparents before we knew of James’ job, some music lessons…and of course, closing up our house here and preparing it for inspection. A few kids here, a few kids there, and mom and dad in different states. It went well, but I’m glad we won’t have to do that again any time soon!
Homeschooling and my 365 painting practice definitely took a back seat this last month. The kids did continue in some of their schooling on their own; we grabbed these unschooling journals for a bit of fun and a change (while still giving a bit of structure- a must in our family), and they were a big hit. I was able to sketch and paint in some small snatches, but not at all in the way I expected to. I somewhat foolishly told my friend whose commission I am working on that I thought once the bigger part of the move was over I would have plenty of time to paint and finish before the month was up; he (far wiser than I) knew better and told me not to worry and return to it when the time was ripe. So that’s on deck in the next few days and weeks- such adventures!
Ah, there is the other news: a beautiful, wonderful, far reaching commission, with a fellow artist halfway around the world; one of the serendipities that could only have happened in the universe’s own timing. It is so exciting and so life-giving, but I can tell you absolutely nothing about it! HA. All in good time.
As I’m writing, I keep thinking of my dear friend who faces some incredibly difficult medical challenges; we spent a long afternoon over coffee recently comparing notes about what life is like with chronic illness. It’s a very lonely path to walk some days, whether you are the patient or the caregiver. It’s hard for many to understand the challenges. But as we were talking, she said- all I can do is live now, in this moment. Her words have stuck with me, and have become somewhat a whispered mantra: lean into the beautiful now. Give me eyes to see and to rejoice in the place where my feet are set.
It’s not a surprise to me that after an intense period of upheaval there is an almost equally intense period where everything gets cleaned or scrubbed or cooked. It’s my way of making sense of the world, putting things to order. Some of it is practical of course- things tend to fall by the wayside and need to be put to rights. But mostly, it’s my way of nurturing both myself and my family back to a more even keel. I have been expanding my repertoire in the kitchen quite a bit this go round, inspired very much by Sarah Britton’s My New Roots cookbook and her blog. A dear friend of mine gifted me her Plant Based Nutrition class and it has gone miles towards making me more comfortable in my gluten free kitchen. The artist in me simply loves all the color and texture that is the hallmark of Sarah’s recipes- and the knowledge that they’ll all taste good. We haven’t found a one of hers we haven’t liked yet. I’ve also been ever so slowly editing our belongings over a period of six months, inspired mostly by Marie Kondo’s The Life Changing Magic of Tidying Up. It’s just something about the way she wrote it, her question- does this bring joy? that has helped me let go of many things that no longer need to be in our home or life. The last stand, of course, is all the paper and memories. As my efforts accelerated over the last few weeks, my little studio/office space became the landing spot for all the paper. I did that intentionally- I knew it would keep the fire under my bones to finish. I am so very close now- I’ve dealt with almost all the piles you see above and have only the medical paperwork and art supplies to finish. I’m sure I’ll be done by the middle of this week, and it feels wonderful to know I have crossed the finish line.
We really try to ‘get out of town’ on Saturday mornings. Of course, that’s a bit of a misnomer living in such a large, urban area, but we try to get into nature each week. We are blessed to have quite a few parks and preserves near us to choose from. Most of them are far enough from the road that you can almost imagine you’ve truly escaped to rural climes. There’s not anything particularly planned about it except for tucking a picnic lunch in as we leave- the locations are rarely chosen until we’re already on the road, based on how everyone is feeling and what we want from the day. I hadn’t really realized how much we made a tradition of it until this last weekend, or how much we need this weekly break. By the time you’re reading this today we will have launched into another week that is back to back doctors appointments. These weeks seem to happen about every four to six weeks and they are particularly brutal. Most of the time we don’t know the nature of the appointments, usually rechecks and labs and the like, following progress on a particular thing. This week is different. We know test results will be delivered. We know most of them won’t be good. It’s hard. And we knew this as we left for our usual wander.
When we get where we’re going, the children usually play on the playgrounds for a while until they are hungry. James and I get a chance to sit and talk while we sip our coffee. Sometimes we read. Eventually everyone wanders over for lunch and we eat. After that, we head out into the trails and wander.
It struck me as I watched everyone spread out on Saturday how much we need this reset: how much I need the reset. There was a particular little star like bush, all dried and barren, near the trail, so beautiful in its smallness, and I remember just sucking in a really deep breath and thinking, God sees this little star-bush. He made it, he arranged for it, it is He who made it strong and beautiful, even in the smallness of it, and it just brought such tremendous peace to me. I have to see to understand, and this how He teaches me.
Everyone was a bit squidgy as we headed out. I felt it myself. I saw my star-bush and it was the medicine I needed; and it seemed everyone else, too, found the thing they didn’t know they needed. Ellianna was fussy and clingy headed out- by the time we headed back in, she had calmed and was holding my hand, humming. David and Josiah had bounced off every tree, every fence, every bush, but by the time we left the river, they too, had taken to walking slowly, stopping often to study something in depth, like the fungus growing on a tree branch. It was so needed.