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.
This week has been all over the place, so I really didn’t play much this week. When I did, though, I’ve been interested in playing around with pattern ideas. I don’t think surface pattern design is anywhere in my future yet, but I like expanding my brain and my hand a completely different direction. I tell ya, if I was a the tattoo type, I’d legit have the pencil floral as a tattoo on my inside forearm. I haven’t finished up the sort of nordic pattern, either- just adding bits and pieces as I have a few minutes here and there.
This particular episode is probably one of my favorites from the new season. I’ve listened to it twice and my husband has listened to it; it’s been food for some very deep conversations in our house lately.
Having a servant’s heart towards others is very important to our family culture, but as James and I both realized listening to this episode, we’ve never sat down and really spelled out why- nor have we been purposeful and pragmatic about what cultivating a culture of service in our family would look like.
For James and I, though, choosing servant leadership in our family and community has been a very conscious choice since early in our marriage. It has been very important to us that we serve wherever we are needed in whatever capacity, to be the sort of help we wish to see in the world. We both have been very mindful that the little jobs are important- the jobs no one sees- and that instead of complaining about things left undone in our community, we need to pick up the tools and go to work ourselves. However, we’ve never really articulated to our children why this is so important to us.
We are definitely fixing that now! ~grin~
This isn’t to say that we don’t already practice a lot of cultivation of servanthood- it’s just that we are going to be far more intentional about it now.
There were a few things in this episode that really stood out to me.
I, myself, am a former military dependent, and I remember myself how the community of strangers always showed up to help in various ways and how we dropped everything to show up for them when things got crazy. How it wasn’t unusual for my dad to mow our next door neighbor’s yard (we lived in military housing his entire career) or fix a sink for the young mom three doors down. I myself watched others’ little ones as a young teen. It was profoundly a culture of service without commendation or notice. It was just woven into the fabric of the community. It was just “something you do”. It certainly has carried out into my civilian life- and it is a big part of why I help people without questioning why they need the help. I, too, am “paying it forward” for all the help my family received when I was young. I join Christina in wishing that aspect of community extended into the civilian world, and to be quite honest, as ‘soldiers of Christ’ it should be a noticeable hallmark of any Christian community. But it isn’t. How can we change that?
At time stamp 14:48, she mentions that her husband appreciates a sort of mantra from Georges Hébert : “Être fort pour être utile” (“Being strong to be useful”). She mentions that many in their circle work out and keep fit not from a sense of vanity but so that they can continue to be of service in whatever capacity they are needed. This really struck me, not only in the physical sense, but also in the spiritual and emotional sense. What would our daily rhythms look like if we are keeping this in mind as a family? Are we ready to step into service at a moment’s notice? What would that take? I personally hate working out and I really struggle with it. Putting it in the context of what Christina was saying helps me think differently about it.
Perhaps where I could most relate to Christina’s words was in her discussion of how illness had affected how and why they serve, and how it had affected her “vision” of others. She says in more than a few places how she wouldn’t have the eyes to see how someone is struggling if she hadn’t experienced it herself. It calls to mind the quote I shared last Wednesday in a way. I know for my own self that my vision has been profoundly changed by my own life experiences. I know what it is like to have to move house at 34 weeks pregnant by myself and no one willing to help: it’s why I show up with my big strong boy-men to help others every time. I know what it is like to show up in church with a fussy baby and minutes of sleep, trying to keep from crying as my toddlers head butt a parishioner: it’s why I am always on the lookout to be of service to the young parents in our parish. I know how sudden illness can suddenly wreck everything a family holds dear- I’m still living it myself: it’s why I am always going to show up for other families in crisis. But I especially love how Christina describes these actions of service as “giving refreshment”. Holding a fussy baby for a tired mom for a few minutes takes so little of us but grants such a deep breath to the mom.
In investment terms, the return on our tiny bit of work is huge. If we could keep that in mind, how much quicker would we be to step up and help others?
I could also relate to how she herself has struggled with accepting help, how she has had interactions with others who find it strange that they would be willing to help, and how sometimes they’ve had to just take a step back and not help. It’s quite sad, really, when you think of it, the weed of pride creeping in. We were made for each other. We were made to be in community, and we were made to need each other. Sometimes having a servant’s heart also means that we need to be humble and realize our limitations, and accept offered help gratefully! Goodness I am preaching to myself here, please understand. I kept thinking to myself after I listened through the episode again- if we truly believe that all comes from God’s hand, whether by our own hand or others’, who are we to disdain it? Try to push it away?
There’s a particular situation our family finds ourself in at the moment that is very, very humbling on multiple levels. We would not be surviving our day to day lives without a few key people pouring into us. I know this deep down in my heart. I am unbelievably and profoundly grateful that these people are willing to sacrifice their own resources for us so that we may be able to keep our heads above water. But I’d be lying if I didn’t admit that I struggle with the weed of pride: how it annoys me sometimes that we need so much help, why can’t we just get it together, I should be helping them, not the other way around. But like Jacob/Israel, our hip bone has been broken and we walk with a limp now, to testify to the Glory of God and not our own. I must remember this, and root out the prideful thoughts that threaten my joy and delight in His provision.
What about you? Have you listened to the episode? What stood out to you?