I have been listening to Dr. Nichole Roccas‘ book,Time and Despondency: Regaining the Present in Faith and Lifeon my morning walks. It has been such a good companion, and in the chapters I listened to this morning, she shared a snippet of the poem below. I went and found the rest of it, and I thought you all might like to read it too.
The Invitation, Oriah Mountain Dreamer
It doesn’t interest me what you do for a living. I want to know what you ache for and if you dare to dream of meeting your heart’s longing.
It doesn’t interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.
It doesn’t interest me what planets are squaring your moon. I want to know if you have touched the centre of your own sorrow, if you have been opened by life’s betrayals or have become shrivelled and closed from fear of further pain.
I want to know if you can sit with pain, mine or your own, without moving to hide it, or fade it, or fix it.
I want to know if you can be with joy, mine or your own; if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, be realistic, remember the limitations of being human.
It doesn’t interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself. If you can bear the accusation of betrayal and not betray your own soul. If you can be faithless and therefore trustworthy.
I want to know if you can see Beauty even when it is not pretty every day. And if you can source your own life from its presence.
I want to know if you can live with failure, yours and mine, and still stand at the edge of the lake and shout to the silver of the full moon, ‘Yes.’
It doesn’t interest me to know where you live or how much money you have. I want to know if you can get up after the night of grief and despair, weary and bruised to the bone and do what needs to be done to feed the children.
It doesn’t interest me who you know or how you came to be here. I want to know if you will stand in the centre of the fire with me and not shrink back.
It doesn’t interest me where or what or with whom you have studied. I want to know what sustains you from the inside when all else falls away.
I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.
To circle back to my post about finding beauty in the chaos, I’m going to dig a little deeper today about taking some of my thoughts and studies and breaking it down a bit further in a specific area.
[As a side note, I’ve really struggled over the years to take big picture ideas and break them down into usable goals and strategies. It wasn’t until last year when Elise Blaha Cripe did a series of Instagram Storieson goal setting that the light bulb finally came on. I am saving up my pennies for when her new book comes out! She’s a great resource for understanding how to do this.]
I find it more and more important that our children feel grounded and safe in ways I would not have even contemplated (or have had the discipline for) four years previously. Because our life is so chaotic, it has become increasingly important that what can be made predictable and clear is made so. That we hold to our family rhythms as much as possible. It gives the children ‘hooks’ to hang everything else on that doesn’t quite make as much sense. This means, by necessity, that we say no to a lot of things that in the past we probably would have said yes to. We tend not to stray outside of our scheduled rhythm very often, because it is upended by medical things anyways. The days that we can hold on to it are very important and we place a higher value on rootedness than some of the ‘short term gains’ activities we could be doing.
What does encouraging “grounded-ness/rootedness” look like?
Here are some recent notes I jotted down and some reasoning behind them:
caring for ourselves: medicines, dental care, faces and hair
caring for our sleep: lamps lowered, quiet tv or reading together before bed, calming music, essential oils for sleep, prayers
caring for our home: regular chores, inspecting what we expect, faithful service with a good attitude
Caring for ourselves: We have medicine regimens that seem to change almost weekly or daily at times. I have been much, much more intentional about setting phone alarms to remind myself of medication needs- to make the practice external and automatic and not something my brain has to track. I’ve also gotten quite literal about setting reminders about making sure that the children have attended to brushing their teeth and hair and washing their face. It’s a little thing, setting the reminder on the phone, but the sort of mental load cost it was costing me to continually track and remind children was pretty high. It was a simple fix and I wish I had done it much, much sooner.
Caring for our sleep: This has been a constant struggle and shuffle for all of us in the family for different reasons over the last three years. There are cycles where no one sleeps well because of an ill child or because they are an ill child themselves. It’s not unusual that just about every third or fourth week of the month everyone’s sleep cycles will get interrupted. It starts a cycle of grumpiness (for the kids) and exhaustion (for the adults). In the last month we started putting these practices into place to solidify the importance of good sleep for us all, teaching these sort of self-care practices to them, discipling them to honor the gift of sleep that the Lord gives, to pray and to let go of the cares of the day. Again, being super, super protective and intentional with these ‘getting ready for sleep’ practices has made a marked difference in our lives in just a month, and again, I wish we had gotten more intentional about it much sooner.
Caring for our home: We go through cycles where the children basically have to fend for themselves in many ways, and I realized that we could make that reality a little bit easier on us all if we acknowledged, firstly, that it happens, and secondly, to have a plan for it. To up the competency level of the children, overall, in say, being familiar with and having the ability to make an easy meal. To make super clear what a ‘clean space’ actually looks like with instructions and pictures. When everyone is clear on the expectations, it makes it a lot easier to hit the marks that are needed to keep a family of eight running. It also means that no one person is having to carry it all in their head or gets stuck doing all the work. This has been a bit more nebulous in practice than the previous two, but I still see improvements happening, if only in shifting what we pay attention to. Instead of feeling overwhelmed, there’s more of a trend towards empowered and confident, both for me and for the kids.
In practical action, here are the strategies we recently put in place to encourage grounded-ness:
phone alarms for medicines and brushing teeth
essential oils and rosewater spray at bedtime
calming music at bedtime
better chore chart making clear responsibility
working on teaching children how to make easier meals
So there you go! What are some practices you do in your home that encourage grounded-ness for your family (even if you are single or it’s just you and your partner these days) ?
Today marks eleven years since we lost our little one. The grief has changed and mutated over time. Now it is a mostly fleeting feeling that someone is missing at the table, an echo of laughter, a sense of something just there, beyond your reach. Love changes everything. I have never been the same.
I want to preface what I am saying here by acknowledging that we are beyond, beyond privileged to have good insurance, and therefore, relatively good health care. This is not true for many I know personally, and it needs to be acknowledged before I dive in. Knowing this, consider also that if this is our story, full of privilege, how much worse it is for your friends and family members who don’t have this access? If we are drowning with our level of access, how far under water are those you know who don’t? Please think carefully about how you can ally with them and care for them in the midst of medical storms.
A few people have been gently curious about why our finances are still so intensely strained. It doesn’t offend me, and I’m glad to briefly answer. Simply put, the medical debt that occurred with Elliana’s and Josiah’s first hospitalizations has been roughly cut in half. However, life didn’t stop that year and hasn’t stopped since. Josiah has been hospitalized repeatedly since; Elliana and Josiah have both required out of state trips to teaching hospitals; Elliana and Josiah have both required surgery; my husband has been hospitalized and required surgery; our special needs son was recently hospitalized. Keep in mind also, that we have a fall full of medical travel, surgery, and therapies. We have to travel either eight hours or four hours for Josiah’s care (depending on what it is), as the local hospitals here are too small to have the right specialists. Our medical debt overall has more than doubled and there isn’t an obvious end or solution in sight.
Even with a job change and an increase in salary, better insurance, and all sorts of help and intervention, we still have to pay out an intense amount towards medical costs. We live on roughly one third to one quarter of James’ income, with about a quarter of that amount going to living expenses like utilities, housing, and transportation, leaving about $400/mo for us to purchase groceries and other household needs for a family of eight (though more often, recently, it is about $250/mo due to our current copay load.) Over half of our income every month goes strictly to medical debt, and it often is more like two thirds on high needs months when payment is required up front for a surgery or hospitalization that we couldn’t plan for. The margin is incredibly thin. A sudden hospitalization can put us under water; and it’s not super unusual to occasionally have a medical bill go in to collections. We regularly cancel routine care appointments and things like needed dental surgeries (three of our children have required dental surgeries since January of this year, and it still hasn’t happened yet and James has needed dental work for 2 years now) and orthopedic surgeries (two of our kids need to have them; they keep getting rescheduled because we can’t afford it and it isn’t quite emergent yet; however one became emergent and will happen Aug 21st.) Part of these being rescheduled is because something more emergent happens in front of them- but either way, we often can’t afford routine care. This year that has been especially true. It’s been a bit better other years.
We often have to make hard choices with medical care, which means that things often go unattended until emergent and can no longer be avoided. Our copay load alone most months is roughly $350-400. Without a dear friend providing for the copays as much as they are able, we’d be even farther in the hole. We wouldn’t be able to afford them and would have to cancel all non-emergency care.
This isn’t even the portions of care we are required to pay for, which is only 10% if completely covered by insurance. Even at ten percent, those can run into the hundreds and thousands of dollars, depending on the care required. It seems like there is only one major surgery or hospitalization we can plan for a year; the rest happen quickly and abruptly, without notice.
It is a nightmare I would wish on no one.
We don’t qualify for state or federal aid (like Medicare/Medicaid, SNAP, welfare) because my husband makes too much, but we apply for any aid we can through the hospitals and medical debt assistance organizations. Sometimes we are approved. Most of the time we are not (again, because he ‘makes too much’). We have considered bankruptcy but have been advised against it as it would not deal with the medical debt. We continue to do all we can to liquidate our assets. I myself have applied for many jobs over the last three years, but at this point we have acknowledged the near impossibility of me working. I spend most weeks driving back and forth between doctors appointments and other such like. Hospitalizations happen on a regular basis. No regular nine to five or service job is willing to work with me and the schedule we keep. I can’t even really work the freelance jobs I used to do in web and graphic design; I don’t have the mental or physical capacity to keep up with them.
All this being said, however scary it seems on paper in black and white…I have also seen God provide us in such amazing ways over these years. Just when we think we’ve hit the bottom of the barrel and don’t know where our next meal will come from, somebody will drop off some groceries, a unexpected check will arrive- all sorts of things, crazy out of the blue things that could only happen in God’s timing. We have learned to hope and to trust and do the best with what we have, knowing that God will provide.
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.