The Davis Family

I need to write.
I have so many thoughts circulating and so many memories drifting out of range and so many photos I’d like to share. I feel heavy with it. I’m not sure what will come out when I start… most likely the heaviest things first. They tend to come first.

Probably my uncle Glen and our family’s health are heaviest for me right now. Then there’s stuff like homeschooling and parenting and special needs and fun adventures and crafting and the rest of life.

My uncle Glen had a tiny piece of metal fly into his head through his eye socket a few weeks ago. That would have been bad, but it also hit his carotid artery, causing catastrophic bleeding in his brain. So we’re waiting to see if he can wake up and if he does, how much he can wake up. I’m just heavy with loved memories of Glen and grief of imminent loss. The family has been amazing in caring for him and staying by his side all these days on end in the ICU. Please pray for his life partner Geneva and his siblings and mama especially?

Health….
Brian has polycystic kidney disease. Did you know that? It’s starting to cause issues… the cysts in his kidneys are getting larger, uncomfortable, and are increasing his blood pressure. Eventually, they’ll compromise his kidney function and probably cause more pain. He’ll probably need dialysis and eventually kidney transplant someday. And this makes me sad. We’ve been able to ignore it for many years, but it’s beginning to be a present issue, instead of a future one. Brian also has some unknown GI issue… he’s lost some weight (didn’t need to) and has had constant gut issues for over two years now. He’s gluten free and dairy free and low salt, without a great deal of improvement, poor man. Wish I knew what was wrong and how to make it better.

I have been having troubling symptoms with my joints and increasing levels of chronic pain and “brain fog” that have limited my activities and capacity. Last week, I was diagnosed with Hypermobile type Ehlers Danlos Syndrome or hEDS. (Long description and short description) It’s a connective tissue disorder that for me… means painful partial dislocations, chronic headaches (sometimes severe and with accompanying nausea), chronic fatigue, and being easily injured. People with a variety of EDS types refer to themselves as “zebras”, because it (connective tissue disorder) causes many comorbidities over time, or “new stripes.” So far, I have only identified and been diagnosed with dysautonomia/POTS, which causes low blood pressure issues (like not being able to bend over and stand up without being careful of near-fainting and nausea), fatigue, and brain fog. Oh, and headaches. For some people, these are progressive… and each of my flares has been progressive so far and that scares me. Some people have to use wheelchairs sometimes and the chronic pain and fatigue are not fun.

Jordan… needs a low priority follow-up echocardiogram. I’d skip it entirely, but it’s past due. But he has to be sedated to do it. And that means coordinating all his other sedated stuff for the same time. And doctors try to be nice and easy to coordinate with, but they aren’t. He’ll need dental care, bloodwork, ear wax cleanout, and echo. And then there’s the sedation bit where they have trouble keeping him in the bed and don’t let me go back to the OR with him, even though it really is in his best interest for me to do that. ABA is going well and I’m excited about that.

Daniel’s got stuff to schedule – follow-ups for Cardiology, Nephrology and Endocrinology. And a big long trip in the spring to Delaware for treatment of his feet.

Maggie appears to have the same connective tissue disorder as me. I’d take her in to be diagnosed and have treatment guidance, but there actually aren’t doctors that work with people like us around here. The one doctor in Portland that worked with EDS patients has a 3 year wait list and just closed her wait list. Soooooo, that makes it much harder. Not sure where/when/if we’ll go.

I’m just tired. So tired. My number one goal lately has been to manage stress well and to reduce stress. Because it exacerbates everything that’s challenging.

So I’m cooking simpler, being kind to myself inside my head, resting when possible, and trying to craft and get outdoors, because all those things breathe life to me.

That’s all for now. I’m planning to post pictures of the kids and the LIFE happening in our family soon. Maybe later this morning. Jordan’s calling and I want to wear something besides pajamas today.

Until I was 30, I didn’t have experience with burnout. And I didn’t get a trophy when I did, either… so if you haven’t walked these roads, I would encourage you to not come. 🙂 I have spent the last six years learning how to live with, deal with, recover from, and respond to burnout or it’s near presence.

I am mid-burnout right now. I cannot usually write about it when I’m experiencing it… but this time, at least this morning, it’s not accompanied by the blanket of heavy depression. This morning is the most energetic and the clearest-headed I’ll be today. And I want to try and talk about burnout, because I shared my symptoms on facebook yesterday and multiple people have reached out to me personally with a kind word and even a few offers of practical support. Thank you.

Burnout. So. Stress. That thing that happens in our bodies when things are challenging. It can be physical, mental, emotional, or spiritual challenge. It can be a mild stressor, causing just a figurative increase in heart rate… such as Daniel repeatedly interrupting me as I try to type this. It can be a moderate stressor… either a combination of needs at once or a larger stressor. Let’s see, an example of moderate stress for me would be taking Daniel to a medical appointment. It takes more time, causes more worry, requires more mental energy and leaves me tired afterward. Then there is significant stress or severe stress – an event that, regardless of how long it lasts, causes all systems to fire, to burn hot, regardless of how much gas is in the tank. Maybe it’s bad news or a hospital stay or an emotional breakdown or an injured child. (edited to add: There is also traumatic stress. Stress, by which it’s very nature, I am unable to bear/process and which may or may not leave the residue of PTSD. I don’t want to talk about that right now.)

Then there is the combination of stressors. If you’re an adult, you will understand this by experience. The breakfast needs to be made. The children need to be dressed. The diapers need to be changed. The garbage needs to be taken out. The prescription needs to be reordered. The child needs driven to the class. The homework needs completed. The bills need to be paid. The floor needs to be vacuumed. The yard needs to be mowed. The diaper needs to be changed again. The snack needs to be prepared. The groceries need to be purchased. The meals need to be made. The broken heart needs to be soothed. The argument/meltdown/cat fight needs to be responded to. The literal cat needs to be wormed. The dogs need their nails clipped….. the list goes on. And the wear and tear of everyday life needs to be managed so that there is time to breathe, to step outside, to do something creative or life-giving to yourself as an individual.

But… here’s the rub. My life (and I know I’m not alone), has been characterized by moderate to severe stress on a daily basis with an unusually high daily stressors load…. for years. Getting my first job was my first introduction to heightened stress that I couldn’t easily say no to. Giving birth to and raising my first child introduced me to around-the-clock caregiving needs. And when my fourth child was born and I had little to no support system back when I was about 30… well, I have struggled to find ways to reduce the stress to manageable levels. I’ve been rather unsuccessful, actually. The stress load HAS been TOO MUCH. My body is absorbing the cost. My mind and spirit and emotions show the signs. I developed depression, began a slow and inexorable weight gain pattern, have painful and migrating inflammation in my joints, developed anxiety, have sensory aversions, succumb daily to mental fog and low energy levels, and frankly, I struggle. This blog is being written, because I had a great weekend, started the week feeling amazing… and subsequently overdid it. Tuesday evening, I couldn’t hardly speak or eat, my brain felt numb and it was difficult to sleep. It’s what happens when I stretch… because I no longer have reserves.

The last six years have provided opportunities for empathy and understanding and growth of wisdom. I have spent lots of time learning strategies for healing and being successful while under prolonged stress. I’ve hired counselors. I’ve taken antidepressants. I’ve fought to make time for exercise. I prioritize sleep at night. Brian and I make time for connection. We say “no” to a lot. And I give myself grace and acceptance for what is broken and what isn’t done. Even important things that aren’t done. And I pray that this is just a season. Our Taekwondo master regularly says that he wants to live to be triple digits and encourages us to live so that we can reach triple digits too. But… I don’t want to. Each day feels a victory. Each day, I’m proud to have made it another day and done it well, or as well as I could. But I would love to lay down my burdens and go to Jesus, to find rest.

Interestingly, and as an aside, in my quest for health, I’ve been listening to a few sermons when I am alone in my space… just knitting. And I’ve started a sermon about peace. The peace of God that passes understanding? And I’ve chosen the word Joy for 2020 and had it confirmed by the Lord. Just this year, He’s given me Hope. Hope when I don’t feel hopeful. Hope OF hope?

Okay – things are getting hairy around here. I need to dress and shower and go to the bathroom and talk to the girls and change a diaper and some other things.

I walk the edge of burnout daily. I have for years. I have hope. We’re not the giving up sort. We fall and we hurt. And we collapse and we weep. And when we can, we get up again.

Brian comes home to work from home this afternoon, because I asked him to and he doesn’t have in-office meetings. If you’re praying for us, pray that he can find a position that is even more supportive of telecommuting.
Tomorrow, I go to an adoptive women’s retreat. If you’re praying, pray that my anxiety will be low and my mind would be clear. Pray that the time will be restorative and that, even apart from Brian’s leveling presence, I will maintain mental health and even grow in closeness to the Lord.
Pray for my children – they are my greatest pride and need their mama.
Pray for my health… the weight gain and inflammation make it hard to exercise… which helps reduce inflammation and weight gain and improves my mental health too.
Pray for my husband – he is my greatest support and he feels the weight and needs restoration as well.

I’m not sure the purpose of writing this now… just to explain? To acknowledge the realities of my life? To show where I am, so that someday I can rejoice in how far I’ve come? To encourage somebody else also walking these deep roads… you are not alone and you are God’s pride. Just keep walking.

He is the God who sees. He sees me. He sees you. He loves you. He’s not the giving up sort either.

2018/2019 have been immersed in my experience with depression. I’ve learned its names, kicked its butt and been trodden down by it too. Waves came in and waves went out and I laid hold of Hope. I hadn’t ever chosen a “word of the year” before, but it seemed right to claim hope for 2019. It was surprising how much power that decision produced. When difficult decisions came up, as they do in life, I made decisions based on hope. Meaning, when I was paralyzed by the possibility that I was making the wrong decision, I chose to make the decision out of hope for the best outcome. I won’t dig into it now. But it mattered. And helped.

The last few months, depression has been a little less heavy, but anxiety has been high. I get hit with it often and intensely, though no panic attacks, thankfully. It’s been a very physical and emotional response to life’s stresses.

I am tired and distracted and really struggling to form sentences and thoughts right now. But I want to get this out. I’m going somewhere with it.

The girls and I have been taking taekwondo twice a week. The instructor says it’s awesome, because we can leave everything at the door and think only about taekwondo. But I can’t always leave it at the door and it’s heavy to carry everything with me. He also says that he wants to live to be a 3-digit-number (meaning 100+) and expects us to respond that we do too. But, I don’t. I have had enough suffering and I’m tired and am hoping my work on earth doesn’t last that long.

I recognized something from trying to think of an answer to the taekwondo master if he confronts me about my not-responding to his 3-digits-old question. I realized that I am living each day, just crawling to reach the next. My goals extend only moments ahead, with the ultimate success being to make it to bedtime. I am so weary. I am so depleted.

And that’s why I’m blogging this morning. Because I realized that although I am not living a terrible, miserable, suffering-filled life 95% of the time, because of my physical fatigue and depletion and the fear of my own developing health issues and anticipation of other hard things in the future….. because of those hard things going on in my head and body… I’m living with dangerously low levels of joy. I am sincere, compassionate, determined, committed, supportive, caring, and genuine. And sometimes I am silly and sometimes I stop for a second to look at the gorgeous leaves as they change colors. But smiling, laughing, and joy are distant.

Joy.

Joy is a big word with complex meaning. It can exist even within suffering. I want to find it.

2020…. when it gets here. I’m naming my word of the year… the word that seems most impossible to find. Joy. I did that with Hope and I discovered that I could find it.

Now I’m hoping for joy.

Hot topics in my Facebook circles:
Sexual identity
Autism and its portrayal on television
Self care

So here I will say: I think the androgynous “Barbie” doll is brilliant. My girls have been confused by the way the boys’ toy aisle is green and black and full of fighting toys and the girls’ toy aisle is all pink and makeup-related toys. I’m always going up-current to tell them, “Girls are all different. Different interests, different strengths, different opinions!” I actually avoid toy aisles when I can, because the marketing pushes them to conform to one version of girl and they just don’t all fit. It creates unhappiness and discontent. Unlike. A doll that is more androgynous is great for this. When it comes to the LGBTQ+ issues, I don’t have a strong/firm belief about what is write or wrong. (80% of my Christian friends can gasp now!) I do have a strong opinion, though… don’t worry. Wait for it? I believe we should love each other. And I certainly don’t believe we should villify or condemn any “sin” over another. I am really uncomfortable calling LGBTQetcetera behaviors sin, though, because it’s not like it’s a chosen difference in brain/body chemistry. There are loads of intersex traits that have caused infanticide and abandonment for ages. Should those people abstain from marriage? What’s God’s heart on this matter? Anyway. I’m not digging into the Biblical or historical context for this debate, because I just don’t have time. For now, I will settle for loving and welcoming everybody, no matter their gender status.

Autism is not all high functioning. Autism is not always a superpower. Autism is not always a sort of “next step of evolution.” Autism can not usually be altered or cured. Nope. Those things are true for a fraction of the autism community. So it’s great to be aware of those differences and celebrate them. But, it is a disservice to the rest of the autism community to guide the public’s opinion into thinking that it’s “what autism is.” For many, many, many people, autism is a disability that cripples and harms and just generally sucks. We learn to live with the limitations and we find ways to survive and even thrive… but it will never look like The Good Doctor or Forrest Gump. That’s all.

Self care. It’s come to our attention that my personal self care regimen needed serious beefing. That, or I wouldn’t be able to sustain this mothering business with any semblance of mental health. Anyway – it’s taken a lot of planning and intentional prioritizing, but I feel like we’re off to a really good start this fall. For me, self care looks like eating, scheduling medical or therapeutic care for myself, self patience, exercise, and drinking more water. And resting. And leaving the house regularly. Three days a week, I leave the house for a few hours with kids to take them to lessons (art, ballet, taekwondo). I also have one additional day each week where I leave the house ALONE for 2-5 hours to run errands, go for a walk, or eat sushi. I go on Saturday and Brian goes on Sunday. It’s hard to trade off like that, but the reward has been worth the cost. Anyway – I’m too tired to write more. This blog has a million pictures and it’s taking too long. I’m drinking coffee and lying down for a bit.

School has started! And extra curricular activities! And while in day-to-day brain-space, I struggle to think beyond the moment or the hour, when I look back on photos, we’ve had a pretty spectacular August and September! I’ll upload and caption some photos for remembering by.

Love you! Don’t hate my conservative-liberal Christian self, k?