This summer has absolutely not gone according to plan. It hasn’t even been in the same zip code as ‘the Plan’. I think we’re on the tail end of the alphabet of plans, having zipped through plan A, B, and C and associated letters in rapid succession. But you know? It not going to plan is precisely what I sort of expected to happen. I’m getting used to this dance we do, learning to bob and weave and flex and still find center.
Somehow, strangely, I’ve had a lot of time to read and to think this summer. These two things don’t usually happen together the way things usually go these last few years. It feels good. But odd. ~weak grin~
It has led to a pretty thorough evaluation of our life at the moment. The Circe Institute/Mason Jar podcasts certainly fanned the coals of awareness into a full blown flame of thought. It was something I was already turning over and over in my mind, but the podcast has given a lot of structure and depth and lines of inquiry to the thought process. It seems like the books that have landed in my to read pile on my night stand have serendipitously had more to say in this line. I just feel the Holy Spirit ministering and probing deep right now, because I would have never consciously strung all this together on my own.
Who are we, as a family? What are our aims? What are we living for?
I feel like we had a solid answer to this back in the day. The last four years? Not so much.
My job, my thought process, lately, is to bring these two disparate realities into a cohesive tension. Notice I say tension, not balance. I’m starting to realize that words like ‘balance’ and ‘normal’ are red herrings, distracting from naming true realities.
The fact is, who we are hasn’t essentially changed. The words that come to mind when I think of our family and what we value are words like: peace, servanthood, delight, wonder, inquiring minds, grounded-ness, and creativity. What that looked like in daily practice pre-medical trauma and what they look like now are very different. Our aims and how and what we are living for have shifted into whole new zip codes in the intervening years.
It’s been a good thought exercise to stop and take stock of just how much things have changed and how we need to re-calibrate our approaches. It’s been important to address places where we got distracted, where we failed, and yes, places where we sinned. You can’t really repair a foundation if you don’t take proper stock of where the damage is and what needs repairing, what’s just fine and what’s not. Without that, you might tear out something that is entirely good and useful or fail to see the gaping hole of damage that needs shoring up and repair.
Here are some of the realities we know to be certain, currently:
- That Elliana, while currently relatively healthy, may ‘crash’ as she has done in the past. She has currently been stable for about a year, and is monitored on a regular basis. Hopefully, we would have plenty of warning that things are changing/deteriorating with her and be able to plan accordingly for care needs.
- Josiah’s health will continue to fluctuate in radical ways, requiring unexpected care at unexpected times.
- That Josiah will require multiple surgeries this upcoming school year, particularly this fall.
- Josiah’s level of intervention will continue to increase as the damage to his body becomes more and more visible.
- Our special needs teen, who recently had his diagnosis switched from Sensory Processing Disorder and Generalized Anxiety Disorder to full blown Autism, needs intense intervention (PT/OT, ABA, and medical) at the moment and long stretches of time investment with both parents, especially this next six month time frame.
- James’ (my husband) health is precarious and showing the profound affect of three years of intense stress. My own is not much better, though I have, Glory to God, not had quite the level of sickness as James has. However, the fatigue we both feel, mentally, emotionally, spiritually, and physically, is very real and should not be ignored.
- That our finances will continue to be profoundly impacted by the level of medical care required. (I’ll delve into this more in depth in a later post.)
- that our other children struggle with the emotional realities of having siblings with intense medical and emotional needs, and often have had to have their own needs take a ‘back seat’ to their special needs siblings. This reality can be a beautiful thing, but it can also be a brutal thing. A ‘brutiful’ reality. Helping our other children to feel seen and heard is an ever increasing priority for us as of late as we settle into the reality that it’s only going to get crazier in the short term ahead of us and the long term consequences are already being felt.
When I think about these ‘knowns’ I realize that a lot of the ways that I would have defined those “our family is…” words previously in an outward focus towards serving people in the community has now, by necessity, turned to an inward focus on serving within our family. I think there was an element of both back in the day (both outward community involvement and inward discipling and teaching kids what this looks like within the family), but now we really have to make sure that our own family and children have their own ‘oxygen masks’ on before turning to help others.
I keep thinking of stained glass windows and mosaics and all sorts of art forms like that. There is beauty in what, looked at a certain way, would seem incredibly chaotic and broken. One of our main aims as a family right now is to shift our vision from the shards of glass to seeing what is being created from them–to find the beauty in the chaos.
What a joy it is to read this….I just keep thinking, feeling…this is truth. What a wonderful blessing. A bitter sweet one for sure many days, but a blessing.
Your family’s art creation of broken pieces, the beau6will astound you…
Love the mosaic image–you shine light for me, Joy.
“we really have to make sure that our own family and children have their own ‘oxygen masks’ on before turning to help others.” …. It’s a really hard balance, the desire to serve others and the fact that one has to serve one’s family first. But you are given your family to take care of and that IS a higher priority. To trust God with other who you see needing help but understanding that you are not the one to give that help – that’s a tough one – I have been there on various levels in this – realizing someone could or does need something – but because of family stuff – one cannot give or fill that need. Years ago a Monk told me I need to respect limitations of what one can give – and years ago a man, talking about his own upbringing (including trauma) and how hard it was to provide for his own kids – said something that I think is very true: “you can’t give what you don’t have.” … even in little ways, I see this to be true, like we wish we could go to our far-away church tomorrow (1hr+ drive) but I am way too tired to make that trip (which means that we don’t get home until 3 or 4 pm instead of before 1 PM etc) and it’s one of those ‘tend to home and replenish’ so that we can, at a later time, do a bit more (like a 1hr+drive one way). We pray for you all daily. You are in a long and hard battle. Sending love to you.