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.
Last week was one of those full, good weeks. More than one kid this week took off on a learning adventure ahead of me, which is pretty amazing. There was a lot of inventing going on, too…just…one of those good weeks when you see the wheels turning and learning being applied, which is always such a gift.
For all that, I felt rather behind for most of the week, constantly playing catch up. I haven’t really found my groove with home care and meal prep since schooling began in earnest. It is definitely a case of knowing what the general needs and routine are, but not having enough hours in the day. It’s not that we sit at the table all day long, but with six learners and six different interests (and teaching Latin and Physics to my eldest) I find myself often barely finishing up before my husband returns home in the evening. The children and I all have our basic chores that get done everyday, but a lot of the maintenance type chores (mopping, deep cleaning the kitchen, etc.) aren’t getting done- and with eight in our space, those areas show the lack pretty quickly.
And the groceries- meal planning- ugh. Don’t get me started. I feel like we spend so much time trying to figure out what we can actually have- always feeling a little bit lost- and having such a limited budget- that often, figuring out a meal plan for our family of eight can pretty much bring me near tears if I’m not in the right frame of mind. We had a long discussion on Instagram the other day about it, if you’re interested. There’s quite a group of us in similar situations and it was a deep encouragement that day to know I was not alone.
Through it all, there is so much beauty to be found. Picking up my husband from work one day, I looked up to find an almost Narnian-like scene under a lamp post…so many beautiful leaves…and the last vestiges of our wildflower plot out front. I etched one of the pumpkins in a quiet hour last Monday. It’s all here…good measure, pressed down, shaken together, running over.