Burned Out

I am not doing well. 

Every day that I grit my teeth and push through, I feel more of my health bar burning and turning to ash, sizzling down toward the end. That is Andie I am giving up of myself to keep moving forward, despite the depleted reserves and frazzled nerves. Between hits, I have scarcely a moment to triage before tossing myself back into the fray, head off another day. 

A few weeks ago, I got the unbelievable blessing of getting to go to my church in person. There were scant few of us there, observing social distancing guidelines and wearing our masks, chairs scattered about in the dark as we watched service remotely on a live stream. Sitting there allowing the hymns to swell my heart, I could acutely feel every crack and scar that these last few months have left. I became painfully aware of how broken I had allowed myself to become. I was so very grateful to UCC for making it possible and to God for allowing me, even for such a short time, to realize how essential coming together with our brothers and sisters in Christ each week is. How much I had been taking it for granted. If I walk away from this nightmare of a year with nothing but the health of my family and the knowledge of how lucky we are to worship God together, then this year will not have been a complete loss. 

I am tired...all of the time. Regardless of how much sleep I get, it never feels like enough. The noise level in this house is so constant, so relentless that every sound feels like a physical blow and I flinch like a beaten dog at each sharp note. The simple act of feeding myself, even deciding what to eat, is just an absolute chore--nothing sounds good and I am not hungry. My existence feels like an ongoing fragility where any event, no matter how minor, could send me over the edge and I will just break down and cry again. 

And you know what? I think you feel it, too. 

Caregiver burnout is not something many people have had to face before. It is a spectre that perpetually lurks in the periphery of families with special needs (of any variety), threatening to overtake us should we fail to keep it at bay. The burden of round-the-clock care for one that cannot care for themselves often falls to a family member because the cost of assistance or hiring out is so astronomically high that it remains out of reach for most households. 

As I sit here, my chest heavy with the enormity of another day’s responsibilities, my heart goes out to all of you that are struggling right now. I wanted to give a name to the hurt you are feeling, and to give you hope because you are not going through this alone. 

Maybe I’m way off base. You’re sitting there reading this on your phone, the smell of another perfectly baked banana bread making your stomach growl as you sigh in contentment at another perfect day. Your kids are all clean and dressed and didn’t fight even once today, certainly not over who stepped on who’s empty shoe or who’s turn it was with the vacuum cleaner attachment they’ve deemed a weapon. Coffee was hot and makeup was on fleek and you are -crushing- this global catastrophe thing. 

In which case: friend, I am happy for you and not jealous at all. Good on you, you high-functioning unicorn. 

This post is slightly less for you, then. Maybe you can store the information in the back of your mind alongside your encyclopedic knowledge of “Tiger King” in case it benefits you or someone you know down the road. Or maybe it’ll just give you a glimpse of the struggle some of us are going through right now, give you a reason to be a little more patient, a little kinder to those around you because Lord knows we all need a little more kindness right now. 

No, this post is for the busted down jalopies of human beings struggling through another day. You absolute disasters that served a meal best described as “it’s food—eat it” because you didn’t make it to the store (which reminds you to tell the kids to hold it because there wasn’t any TP on the shelves last time). Those that are considering lining the children up fully clothed in the backyard and spraying them down with the hose in a master shower/laundry sesh of multitasking. The ones that sat down on the floor and cried because it’s 2 o’clock Cry Time and you are so damn sick of everything. 

People like me. 

As with all topics, I am so far from being an expert. But I hope there is a nugget of something here you could use. If there is one thing that resonates, I think that would be enough. 

I actually learned about caregiver burnout when I attended a seminar a few years ago on the topic so I could report back to REACH what I had learned. The seminar was hosted at Abilene Regional and was geared toward those that care for elderly relatives suffering from dementia. A lot of the information was applicable to us as well, though we had to adapt it for our special circumstances. It is okay; we are used to modifying resources to suit unique individuals (Ay-oh, SpEd joke; get ‘em while they’re hot.)

It is estimated that caregivers provided over $216,000,000,000 in cost of care last year, though of course they are not compensated for their time. I would be curious to see the numbers posted next year while untold households across the nation were affected by this pandemic. They are responsible for all duties “assigned or not assigned”, which basically means “the everything” relating to another person--they assist with everyday activities such as cooking, cleaning, driving, managing prescriptions, paying bills, health management, appointments, etc. 

Starting to sound a little familiar?

Stress levels, physically, mentally, and emotionally are reported very high; most suffer from anxiety or depression or both. 

They offered a couple of benefits like engaging you mentally and giving you something to do when you otherwise might not have much, but these are geared toward those in retirement. I am in the prime of my life, watching as I whither away and age before my time under the duress of constantly being needed. But there is one big benefit I have identified. 

Spending time with the kids is undeniably a blessing. They are so funny, smart, wonderful little goblins, even when they are acting like downright sociopaths. The fact that I -can- stay at home, even stretched financially as we are, to care for them is a gift if for no other reason than I am getting this irreplaceable time with them to watch them grow and learn. There are many people in the world, but no one can care for your kids as well as you can--that is just facts. You know them better than anyone, they are a part of you. 

The ugly truth that keeps coming up when discussing caregiver burnout is that there is no cure. A couple hours away, treating yourself to some self-care like getting your nails done or going on a date is not enough to undo the damage that has been accumulating for so long. 

But…

There are some things that are proven to lessen the load. Kind of mitigate the damage as it occurs so there is less to deal with in the aftermath. 

One of which is skills--establishing routines that you don’t deviate if you can help it. I know, it sounds so simple and frankly constricting. But the routine gives everyone expectations and can make an insecure world feel more secure. I encourage the routine to include both essential tasks of every day, like brushing teeth and taking meds, as well as those that you know are good for your soul but you put off. That looks different for a lot of people. Maybe it is taking a run, watching a show you enjoy, or putting on make-up and jewelry. For me, it is reading to my cat Oscar, playing a game with Mike, and writing in my dark closet. Things that don’t take a lot of time but remind you, even when you are most on the fritz, that you are a unique and special human being that has likes and dislikes, things that make you feel whole and like a person. It is a lifeline to who you were before and who you will be again when things get back to some semblance of normal. 

Another skill we are coached to embrace is called Caregiver Grief. It is okay if you are not feeling grateful for this time together. You need to be able to feel upset that you are not getting to do the things you like to do, to miss having adult conversations and social interactions. To miss the freedom of being able to go where you want and do what you want. You are entitled to feel your feelings. Even if those feelings are “I want to throw the dirt in your face for the way you hold a dustpan” when you look at your spouse. Feelings I am sure everyone has had. We can’t always act on those feelings, but if we ignore them and feel like they don’t exist then we end up with a disconnect, wondering why everyone else is doing so well and we aren’t.

There are suggestions like reading about how to diffuse tense situations (I sing absurd parody songs that confuse and confound, take kids outside, make them run off energy—basically anything I can to keep tempers from flaring too hot),  ask for help when you need it, take moments for yourself. 

Treat yourself with exceptional kindness. You are going through a lot and sometimes, you’re the only one you’ll have on your side. Use gentle thoughts, be patient when you struggle or stumble. Don’t beat yourself up for what you didn’t get done, for losing your cool or for not looking your best. Your body’s job isn’t to look good or be productive—its purpose is to house a spiritual being. So today, it did an excellent job. And so did you. 

The last suggestion is find your support.

Isn’t it wonderful that we have communication abilities even despite all that is going on? Nothing beats a face to face with someone you love, but it does the heart so much good to be reminded of all it keeps beating for. Call or text your best friend. Send stupid memes to your coworkers, or pictures of things you think they’ll like. Make social media posts that get people talking and engaged, or write a letter to someone you want to know better. Each connection is a string making up the rope that you are holding on to, pulling you through each moment to the next until you can stand on your own. When everything around you is uncertain, always remember: 

We are all pulling for you.

—Andie

Confirmation Bias

There is a phenomenon called “confirmation bias”.

Simply put, it is the tendency we have to interpret new data as evidence that supports our already held beliefs. 

It’s why, for example, when I see positive things happening in my life I attribute them to God and not good fortune. My preexisting faith tells me that it was the intervention of an omnipotent Creator and not random happenstance. 

We are all subject to it; it is a central reason that arguing with someone over religious or political topics is so very frustrating, because both parties are looking at the same situation devastatingly differently. Holding our bias, we walk ourselves backward, searching for studies that bolster our preconceived notion and dismissing with scoffing any that disagree as unreliable. Even the way we word our search engine queries (“vaccines cause autism”.... “vaccine toxic poison chemicals”) is leading, and like a faithful and intuitive pet, Google leads us directly to what we are searching for, valid or not. 

Most concerning to me is how, as Christians, we treat the Bible in the same way—arming ourselves with verses as weapons with which to attack dissenters. In this manner we convince no one, as only those whose beliefs already align with our own will likewise find the information so compelling.

Knowing this, I rarely seek such arguments. They do so much damage and accomplish so little. 

Then I see something posted on social media along these lines:

“Women should not dress so provocatively. Men will be men—they are biologically programmed to be sexually aroused. If you are flaunting your body, you are inviting men to come after your body. How can I teach my sons to respect you if you do not respect yourself enough to cover up?”

I get exceptionally, exquisitely furious. It causes a sadness that I feel deep within my bones. For I know which three specific groups those posts will resonate with. 

1. Others that already believe as the post does. They nod vigorously along, attributing to prudence and moral fortitude that they or their loved ones had not been victims of assault. To their minds, that they had been spared that particular trauma is surely because they had taken more precaution than those unfortunate, though not entirely undeserving, individuals. They tsk and cluck, shaking their heads and praying for decency and good moral values to come back. 
2. Victims, who have already in their shame sought to blame themselves. “If only…” they whisper, folding protectively in on themselves. If only they hadn’t worn that dress, danced that much, drank that drink. There has to be something they did, something they could control because the opposite is too hideous a reality to face—that it was random, they had no control over it, which means there is nothing to stop it from happening again. When it does, who will they have to turn to? Even if you believe them (and why would you?), they now know in your heart of hearts you believe: It is their fault. 
3. Rapists. Words of affirmation that stoke and feed the ugliest part of themselves, softly cooing “you can’t help yourself; it is in your nature. All guys are like this.” That spark is all the encouragement needed, the scaffolding that builds to “I am owed sex—the way she dresses is an offer, and she can’t take it back now. Why do I need to show them respect they don’t even have for themselves?” You didn’t put the thoughts there; you just fueled a fire that was already burning.

I am not compelled by these posts, nor would I ever be—it does not fit within my bias. My bias that states: rape is uncalled for in 100% of cases. There is never a justification or reasoning that will ever excuse non-consensual sexual contact of any form, for any individual. 

There is never an excuse for sexual assault. 

I am sick unto death of having the threat of rape held over me. It is a manipulation tool for weak individuals that rely on tactics of terror to defend their positions. 

Transgendered individuals using your restroom? Men (dressed as ladies) will be waiting in the Target bathroom to rape you. 

Migrant caravan fleeing impoverished countries? Just walked 2500 miles to rape you.

Every boogieman politically dreamt up has one thought on his filthy, depraved mind: forcing himself upon me. 

And who can blame him, the way I’m dressed?

It is awfully strange, don’t you think, that “men can’t help themselves” does not extend to certain demographics when it comes to prosecution? 

Since I was a little girl and first started attracting attention I could not have possibly asked for (being pulled aside at church camp to put a shirt over my one-piece swimsuit during girls-only swim because boys existed elsewhere on the campgrounds), those in authority have made it abundantly clear that it is my job to ensure my own safety. To hear tell, all men are predators—it’s in their biology, they can’t help it after all—waiting only for your precise moment of weakness to attack. So we all learn and stridently follow the rules:

Don’t go to the bathroom alone

Don’t leave your drink unattended

Don’t wear revealing clothing

Don’t show too much skin 

Don’t go anywhere after dark 

Don’t leave your car unlocked 

Don’t dig in your purse in the parking lot

Don’t leave your windows open 

Don’t ride an elevator alone

Don’t go into a parking garage alone

Alone, you are vulnerable. There is nowhere you are safe. No one can be trusted. 

I have spent so much time in my life being afraid: afraid that I was going to be assaulted, then that my children would be. It has been drilled through my head for decades: if you are diligent enough, you can avert a hideous (but preventable!) tragedy.

Even if the basic premise does not hold up to scrutiny.

Rape is not a modern invention. It has happened throughout the ages, through every fashion trend—when women wore hemlines to their knees (and older generations were scandalized that girls bared so much leg) and when they wore jeans (and not skirts, like decent young ladies). It was a thing in Victorian Times to ladies that were covered from neck to ankle and in Biblical times adorned in robes. As far as we can tell, it has always happened.

It happens in every culture, regardless of clothing norms. It does not exclusively, or even predominantly, occur where women have been dressing “immodestly”, a vague and subjective attribution. 

If I entertain the notion, even for a second, that the manner in which an individual dresses could warrant a sexual attack, it opens the door to other, more troubling co-conspirators: 

Can a child that endures molestation be accused of inciting the response? That perhaps they exposed too much skin, wore something a little too tight, because after all, predators can’t help themselves, can they? 

If that, too, is the case, that it is a biological imperative that cannot be restrained or overcome, I must then wrestle with the idea: every man I have ever known either is or will be a rapist.

Most men have been exposed to the same temptation, seen the same provocative imagery. Many have been in a situation with a vulnerable individual that could have been, through persuasion of superior strength, coaxed into a more sexual position. When presented with this scenario, either they have the ability, the free will to choose to walk away, or they simply do not. With the presumption that men cannot help themselves, the illusion of choice is nonexistent and assault will happen in every case. 

If this is reality, I must accept not only the burden of protecting myself and my children from being attacked, but also in guarding my husband and boys from attacking others, as is their nature to do.

While we are on the subject: how do we reason our way into stating that men are biologically unable to overcome their sexual urges when presented with a tantalizing body while simultaneously telling homosexual men that their urges are unnatural and must be suppressed, repressed, and reprogrammed? 

Does having a biological basis for a desire give it automatic free pass to be fulfilled?

I refuse to have the threat of sexual assault held over me. Through pseudo-“insightful” posts blaming victims for provocation I can safely assume that were it to happen to me, I likely would receive no sympathy or support. In the unlikely event it made it to court, every part of me would be dissected to determine exactly how and why I had it coming, whether I wore certain underpants or smiled in a particular manner or even if I had the audacity to enjoy consensual sex with others. If too much time had passed, I would be berated for bringing up this man’s past; if it was recent, they would implore me to think about his future. How could I let this moment of pleasure (for him, though surely I enjoyed it at least a little, too?) ruin this individual's prospects when one day he might be a Supreme Court Justice.

Or even President.

Who knows: maybe I’ll get lucky and the attacker will be someone that we can politicize, the face for the real monsters out there, one that doesn’t look quite so much like ours.

Wouldn’t that be nice?

—Andie 

Break My Heart for What Breaks Yours

I have been wrong.


It is in my nature to observe and listen, to gather more information before speaking. The more I learn on a subject, the less I feel qualified to speak—what could I possibly offer to the conversation besides more ignorance, another voice in crowd screaming out into the abyss? There is no wisdom here, no expertise. Surely there are better, older, wiser, smarter, more eloquent individuals than I to address these issues.



I have hidden behind cowardice disguised as humility.



No one feels qualified. Moses said, “Please, Lord, I have never been eloquent, neither recently nor in time past, nor since You have spoken to Your servant; for I am slow of speech and slow of tongue.”
‭‭(Exodus‬ ‭4:10‬ ‭NASB‬). Even now the nagging, sinful insistence in my head rebels against this: does your arrogance know no bounds, Andra? Comparing yourself to the great biblical father MOSES? It is not lost on me that when I felt compelled to write this, to finally speak, God lead me directly to the chapter and verse where He replied to Moses then and to me now:  “Who has made man’s mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I, the LORD?” ‭‭(Exodus‬ ‭4:11‬ ‭NASB‬‬). I pray now that the Lord will be, too, with my mouth and teach me what to say. And I once again implore Him:



Break my heart for what breaks Yours.



The disquiet in our souls after these past few weeks were by divine design. We know that what is happening in the United States and in the world is not what God intended for us. Jesus came to conquer sin and death and it has settled over us all, stifling and oppressive until we cannot move from it, cannot breathe.



“I can’t breathe.”

Why did it take this long for us to hear the voices? How much longer will it take us to act?



I did not watch the video of George Floyd. In all media I consume, I am as deliberate (if not more) in what I ingest mentally and spiritually as I am in what I put in my body. I know that violence weighs heavily on my soul in such a visceral manner—my stomach churns until I feel physically ill, my temples throb with the pulse of the memory replaying again and again to the beat, imprinting itself deeply upon my psyche. God is doing once again what I have asked: He’s breaking my heart. Because I can say with all conviction that our Father, our Creator is damaged this week, and He demands that we not look away.



For too long we have couched our responses. We have justified violation of God’s Law, one of the commands He deemed important enough to write down (twice) and say countless times:



Thou shalt not murder.



Jesus both expounded and simplified this concept by saying “And the second is like unto it, Thou shalt love thy neighbour as thyself. On these two commandments hang all the law and the prophets.” (Matthew 22: 39-40 KJV). Yet somehow we dream up the most stunningly obtuse of justifications, from unrelated violations of human law in the past, to trying to sympathize with the fear the perpetrator must have felt (though we know we were not given a spirit of fear, but of power and love--2 Timothy 1:7). Anything to soothe our troubled spirits from feeling the unease that a lifetime of biblical teachings and the Holy Spirit stirs inside each of us. Until someone so above reproach had to die in such a painful, humiliating, and public fashion that even the staunchest defenders among us have nothing left to offer.


The silence amid the tempest has been particularly deafening. Mine own included.


Now the only responses our battered hearts can offer up are feeble even to our own ears. “Rioting and looting are never justified.” When you hurt someone, you don’t get to judge how they react in their hurt. And make no mistake, we allowed this hurt to occur. Again and again and again as we made our excuses and criticized how they protested, how politely and peacefully they requested justice. We allowed it to fall on deaf ears for years. How unspeakably horrible is that? Voices crying out to the God of Justice to be delivered from His own people, and we have the audacity to fuss about the manner in which they do it? The level of presumption is truly breathtaking.


“Not all cops...”


Well of course not all police officers. We aren’t discussing all law enforcement just as we are not discussing every life, every murder, every individual on the planet; just in the same way, we are speaking precisely of that. Every human life has value to God the Father and deserves honor because He demands it. He does not plead with us, He commands it—how yet do we still feel compelled to argue with it? It isn’t even anything as nebulous as an embryo. The lives we are discussing are fully actualized black men and women begging us on behalf of the Father we share to grant them the privilege of living. Should we never be so damnably arrogant, so condemnably elevated in our own esteem that we believe we have authority over such matters as life and death.


God is angry. And He is hurting. He is furious with how long we have let this go on, how long we have tolerated injustice in this world. Perhaps not all police officers, but how many? How many is too many? Do we have a number? And how does that percentage stand up to how harshly and swiftly we condemn other groups on the sins of the few?


There is no party of “law and order”, because as Christians we are beholden to the Law of God, and through such we have shaped and are shaping the laws of the land. Like us, society is meant to learn and to grow—the Bible is a meditative text for a reason. It is a living, ongoing gospel that we could not possibly ken from one skim, a one and done checklist. We are meant to go back over it time and again, discovering intention and meaning with every visit.


And yet some concepts God put so unambiguously, so heavy and bluntly that there is no room for interpretation, misunderstanding, or argument:


Thou shalt not kill.


Cycles of destruction and rebirth are kind of a theme in the Bible. We see nations rise and fall only to rise again, a sort of purification through fire—we are refining ourselves as individuals and as a group. Each time letting a little more of the unholiness of our sinful humanity fall away so we are just that much closer back to the original relationship God intended for us. Do not mistake the groans from the pains of childbirth, for He is using this for His glory, to give birth to a new creation in us, hopefully a little less damaged, less broken, less marred by sin.


I worry I am not making any sense. That my words are crazy or rambling. I am no prophet; I won’t be cutting off my beard to burn or attack with a sword, though I could see myself laying on one side for a few years. Maybe if I do, I could speed run through this catastrophe of a year and come out on the other side. It certainly sounds easier than enduring this God-awful heartbreak.


If we speak in truth, we have nothing to fear for God is with us. Men will condemn you. Speak anyway.


Speak out for justice. Speak out for the voiceless. Speak out from your positions of privilege, in knowing God through Christ Jesus the son, in calling yourself followers of Christ. Cry out, let your voice be heard among the many and demand better of the world. Father, please we beg You:


Break our heart for what breaks Yours.

--Andie

Mom and Dad

As promised: a post!

Around Wednesday two weeks ago, Michael started feeling poorly.

Just a cough at first. By the next morning, his chest was hurting. We figured it was related to his blood pressure issues--he is on three medications (amlodipine, valstartan, and hydrochlorothiazide) plus a water pill for his high blood pressure, but when we tested him it was actually in range for the first time since who knows when. Thursday evening, I was worried enough that I had him call the Covidhelp line here in Abilene. The answering service took a message and told us a doctor would call back first thing the next morning.

Friday, he woke up in rough shape. He was in a lot of pain, his throat felt like he was "swallowing around razor wire", he had shortness of breath, and his chest hurt quite badly. He wasn't running a fever, hovering right at about 99, but was nauseated and his muscles were sore. We called the covidhelp back and they said to come in to get tested for flu and strep. In a week, if he still wasn't feeling well they would run a test for coronavirus but in the meantime we could rule some things out. Not even an hour later, they called us back to tell us both those swabs were negative.

Friday was pretty difficult because he was supposed to be isolating away from us. Michael is...he can be a handful when he is sick (I say as his most devoted and loving wife). The biggest problem is that he argues and disagrees and says things like "so you think I should....?" about four hundred million times after I have given him my suggestion. I felt like we were having the same conversations over and over again and it was getting us nowhere, taking my already limited attention away from the kids.

Saturday morning when Michael got up, it was the worst day so far. His whole body hurt and ached, his voice was rife with pain and every sentence labored.

Being the naturally loving and nurturing wife that I am, I snapped at him to stop being my "biggest baby"--he was to do what I told him to do and when I told him to do it. He sulked and glared and very crossly consented. First order of business, I sent him off to shower while I made up the master bedroom. I folded the mattress pad cover in thirds at the head of the bed beneath the sheets so his head would be elevated, and I put five pillows on--four to prop him up comfortably, one to use to cushion his chest when he coughed. (This had worked for my incision site after my c-sections so I figured it couldn't hurt to try in this application.) I cleaned out and sanitized the humidifier and set it up going in the room, rubbed Vicks on his chest and feet, and put a bag of cough drops, nasal spray,  and little cup full of his medications on the nightstand. Beside it, I put a bottle of water, a bottle of Gatorade, a warm tea with honey, and a croissant. For a couple of hours, he laid back there watching a pirate show he had been curious about and hydrating.

He was feeling more human about mid-morning so I brought him a bone broth to sip on and some crackers. Every action seemed to take so much out of him; he was so exhausted, but every time he tried to sleep, the violent coughing would jar him awake again. Any food I brought him, he would dutifully pick at but he wasn't eating a quarter of what Tula was eating.

Sunday I believe was the worst day. He hadn't slept in so long, everything hurt, and he had developed a migraine. I slipped some Nyquil in with his morning medications and after several hours he drifted off to sleep. Most of the weekend, he didn't have the energy to accomplish anything but toddle back and forth to the bathroom and dutifully drink the many beverages I kept within arms reach at any given moment.

A woman from my church, Lynette, sent me an email about mobile COVID testing being available the next day. I pressured Michael to submit an application; Monday, they called him down to get swabbed. He was still in horrible shape, but was up to driving down to the clinic by himself. He said it was the worst experience of his life--felt like they were swabbing his eyeballs from the inside of his nose. We got paperwork that said he would get results back in 24 to 96 hours.

The worst days of the illness were Saturday through Tuesday. He seems to be on an upswing now, even if he is still coughing, still feels like he can't get a deep breath, that his chest hurts. He's still hydrating and now sitting in the backyard getting fresh air and sunshine when I tell him to. I have even convinced him to eat a few vegetables (quite begrudgingly and with great gnashing of teeth, but consumed all the same) in the small meals he can manage.

People from our church have overwhelmed us with their kindness, checking in on him via calls and texts and emails, and bringing us meals, offering to run errands for us. It has seriously helped--on Sunday, I remember I asked Emerald to just go make breakfast for her siblings because I had my hands full taking care of Dad. I figured it was a simple enough responsibility: we have the breakfast shelf in the pantry that has dry cereal, instant oatmeal, stuff for toast; in the fridge, we had yogurt and fresh fruit. Surely she could put something together out of that.

In fact, she did: everyone was served a hot dog bun filled with butter, strawberry jam, and maple syrup.

I have to applaud the creativity because I could go into that kitchen every day for the rest of my life and I would never have come up with that concoction.

So it comes to how I am coping with all of this.

We mutually decided with our care worker that she would stay away awaiting the results of the test because we didn't want to unnecessarily expose her. She wanted to go back home to visit her parents anyway, so the timing worked out on that front. But it has meant that the burden of the household has fallen to me more.

Currently, I am in excessively good physical health and I am doing what I can to maintain my spiritual, mental, and emotional health as well.

At the beginning of the year, our church was doing this thing challenging congregants to spend more time with the Lord every day this year, by praying, scripture reading, acts of mercy, attending sabbath, and making time for Christian fellowship. They handed out these cards that say "A Path for Life" as reminders to follow in these spiritual disciplines. I have tried to participate in as much as I can--I have one card posted on the mirror in my bathroom and the other in my car where I will see it. Mostly I have been utilizing the Bible app which I had underappreciated until now--it really has some cool lesson plans and videos; I am a big fan of the Bible Project videos that teach you how to read the bible and goes in depth on each of the books. Starting in January, I began a whole Bible plan that will get you through reading the entire Bible in one year. This one appealed to me because it doesn't go in order, but combines related chapters from Old and New Testament books into daily segments. The problem I have run into is that I had been setting aside time twice a day to read: once at nap time and once at bedtime because it would ensure quiet for me to read and reflect, but now as soon as I start reading I get so dreadfully sleepy!

Mentally, I make sure I am reading--right now I am into poetry so I am reading the memoirs and poetry of Pablo Neruda, a truly fascinating character I had known so little about until recently. His poetry is moving and remarkable. The memoirs I had found at Dirt Cheap for $1.20; I just started reading it aloud to Oscar, my cat, because I am a crazy cat lady and he is a sweet old man that enjoys listening to me read. Anytime I start heading outside, he trots out behind me and sets up camp under my lavender tree so he can listen in peace to our story together.

Michael noticed how much I was enjoying the Neruda memoirs and bought me a book of his poetry, an incredibly thoughtful and touching gift. As a thank you, every night I read a poem aloud to him or record myself reading them so that he can watch them when he is feeling more up to it. 

Because two books is not enough books to be reading at one time (or I guess technically four because I have my whole Bible plan that has me going through an OT and NT book at a time), I also have to have an e-book for when I can't sleep, so I am reading through Blake Pierce detective thriller books. 

Emotionally, I do art--I found I like doing cartoony styles, but I also try hand-lettering and watercolors as well. Kind of casting a wide net and seeing what appeals to me. I crochet when I can, but that is more of a cold weather activity for me. I spend a ton of time in the sun, as much as I can. The backyard is my haven that is well shaded and temperate, quiet and safe. Back there I have my lavender tree and my chair to read in, drink my water and just breathe. Set up in my closet, I have my little "office" with flamingo string lights and the computer that my friend Jeff gave us so that I can write these blog posts, but I also work on any number of other projects and listen to my music back here. 

Physically, I run whenever I can, eat as healthy as I ever did (even if I don't feel like eating at all), try and stay hydrated, get good rest, take my medicine regularly, things of that nature. I know from experience how easy it is to let my needs get shunted off onto the back burner--after a while you look up and you realize you are in really rough shape. Couple weeks ago, I had my first panic attack in a long time. It was quite severe and afterwards I felt so shattered, like a crystal bell fractured by an iron ball peen hammer. It was a hurt I could feel all the way in my back teeth, can still feel, but the shame of falling apart was so much worse. I couldn't stop telling Michael that I was sorry because I am better than this, right? Shouldn't I be better than this? For days afterwards, I felt so fragile, like anything could make me break again, which embarrassed me further. 

No time to fall apart like that now. There is only one course of action: accept help when it is offered, and make sure I am prioritizing self-care. Michael and I are both quite aware of the risks of caregiver burnout, how irreparable it can become and how serious the consequences are. 

We got lucky. I take care of him, and he takes care of me. That way, everyone is taken care of.

All in all, not a bad system.

--Andie 

All the Rest

The colors...that is what always stands out to me.

When I am forcibly reminded me of some of the worst days of my life, the colors saturating the incident are somehow so much more vibrant in memory than in reality. On the day Gabriel was diagnosed, it was the rich chocolate brown I dressed the whole family in, this warm teddy bear hug of a hue. On the day Michael went into Cardiac ICU with a ruptured ulcer, it was the vivid darkness of his hair and beard, so stark against the paleness of his face and the frothy blood on his lips, that I come back to. For Tula's Very Bad Day, it was the purple of her Kickee Pants striped swing dress, the bubblegum pink of the sponge I used to moisten her parched mouth when she was unable to have a drink.

Seven years ago today, Facebook so helpfully recalled, my memory is flooded with green, red, and white.

The green is vibrant, unnatural to any growing, living thing, particularly the sepia-toned aridity of Lubbock. It is her favorite dress, an A-line thrift store find that was homemade with love for another little girl, the fabric carefully chosen with Winnie the Pooh depicted on it. It was too fancy for a day in bed, but she is a fancy kind of girl.

A nearly divine white of freshly washed emergency room sheets, coupled with the smell of saline and alcohol wipes, and it beckons her in until she nearly disappears, until I almost cannot see her, except...

Oh, except that feisty, sweet, unmistakable strawberry hair.

My eyes are fixed on the top of that thick, tangled mess matted with sweat as I back through the doors and call Michael to tell him that our Emerald, our baby girl has Type 1 Diabetes and is fighting for her life. The dramatic little diva that was fine just a couple of hours ago (wasn't she?) was now unconscious and would continue to be so for the next twelve hours or so.

When I have my little bouts of panic built around a time in my life, it is the colors that throb and pulse, bringing the picture to life so I can live afresh the horror. As the terror fades so do the colors, bleeding out into serenity.

My baby girl survived. Both of them did.

All these Weardens are a stubborn, scrappy breed of individuals, refusing to concede in the fight. Honestly,  it was that initial tenacity that won Michael my heart since I was reticent to settle down. So far, we have a history of surviving.

It is helpful to me to remember that when I am feeling panicked about health concerns and the future. Michael is sick this week. He has a cough, sore throat, shortness of breath, chest pain, and nausea. Both the flu test and strep test came back negative, but the clinic wants him to wait a week before they do the coronavirus test. Until then, he is supposed to quarantine away from us and wear a mask to prevent spreading whatever he has.

My instincts have been at war with this one. I want to take care of Michael, nurse him back to health, be there with him through his sickness.

The other part of me keeps seeing that strikingly red hair splayed out on the aggressively white hospital bed, feels the sweaty, limp weight of an unconscious preschooler in my arms. Such a unique sensation when compared to the mere wisp of a scant nine-month old in my arm, a ragdoll in a bamboo-cotton lavender dress, begging for a drink because she is so, so thirsty.

With every fiber of my being, I want to prevent that scenario from ever happening again. So it is hard not to see virus McMike as a threat to that. Though we have all been exposed, I still have the urge to dog his footsteps, sanitizing everything he comes into contact with.

The anxiety as this wears on is starting to get to me a bit.

But then....why should it? When I evaluate, we are actually doing well under the circumstances.

Tula is a hog in heaven with her siblings here all the time. At first, she was irked because her great idea of going to visit the "Zoop Keeper" was always met with Mommy telling her "Sorry sweetheart, the zoo is closed today." But she has an inflatable pool "swimming ho!" in the backyard where she can splash and play on the hot afternoons. We get to go on walks and see the pretty flowers that are growing, climb on big rocks that we find. And best of all? Benny and Em-er-uhl and Gayby are all here all day long to play with her!

She had a tele-medicine visit with her endocrinologist last week. Her numbers have been pretty good with the exception of big post-dinner spikes, so we are keeping food logs about what she is eating at dinner and splitting denser carb meals (like bread, pasta, pizza) into two smaller meals for her so as to prevent the spike. Michael and I have kept the girls on a controlled carb regimen since their diagnosis, carefully restricting meals to 60 carbs or less except on special occasions; Tula, who doesn't eat as much, usually gets around 40 carbs at dinner. So it will be more like half a cup of pasta plus veggies and protein at 4 pm and then the other half at 8 pm. Not a big change, but it should help. She's also been staying pretty steady overnight lately, which tells us that her basal is right on track.

We have a pretty set nap schedule that gets her to sleep quickly and with little effort: we sing a song, she gets kisses, we cuddle and read my daily devotional on the Bible app. They have little videos with their verse of the day now; Tula likes "Inty" (N.T. Wright from Oxford University). By the time I get to the prayer portion, she is deeply asleep. The only issue I have encountered is that this has the side effect of making me quite droopy-eyed myself, which is not the mental state you want to be in during quiet time with our Maker.

Mostly, Tula wants to follow Benjamin around the house, doing everything big brother is doing and saying everything big brother is saying.

Ben is coping well, I think. He is understandably stir-crazy. At first he was so excited to be doing homeschooling, but when he realized I would be making him do -all- subjects and not just math, he got considerably less enthusiastic. The excess of energy he has decided to funnel into irritating Emerald and parkouring off my furniture, exasperating but expected eight-year-old boy behavior. He is highly motivated by the occasional soda or screen time, particularly if we get to play together as a family. His games are Battlefront (a Star Wars game) and Sea of Thieves (a pirate game). The one thing currently that brings Emerald and Benjamin peaceably together is playing Roblox and Minecraft. Frankly, I am just glad to have them working together cooperatively so I can get a break from the incessant bickering and snipping they do at one another. To be fair to their case, I'm getting pretty sick of everyone being up in my place all the time, too.

I wish there was more I could say about Benjamin. We are having some behavioral problems. Frustrated outbursts, mostly. He interrupts and explodes at me and Michael because any attention is good attention and boy is he sick of being cooped up all the time. He tells me he has cabin fever. Most of the others are more or less content to watch screens or play games or stay indoors all the time, but he is like a lab puppy--you gotta get him lots of exercise or he is going to tear up your whole house.

One thing that is driving me crazy that he is doing: every day, we have to clean and straighten at least a little. I try and manage my expectations based on what is age appropriate to do, but I have never seen a kid more resistant to working as he is. You have to be in there and help constantly and give frequent praise and verbal prompts to get him to keep going. If you just stand in there, he has a complete meltdown and cries and angry outbursts and doing practically nothing until you leave. If you don't watch him at all, he hastily stuffs everything in the nearest closet, bin, or drawer, stuffs what is left under the furniture and calls it a day. About once a week I have to go into his room and empty everything out because I have to find things that have gone missing--chances are if you cannot find it, it is somewhere in Ben's room stuck in a bucket.

He responds well to incentives. I'll offer him sweets, candy bars or ice cream, sodas, screen time, etc. But if it is edible, he always asks if he can split it with his sister, a scenario that Emerald takes full advantage of, allowing him to do all the work while she reaps half the reward. Of course when she wins, the sharing is not reciprocated. But it is a system that seems to work for them and I will not dissuade them.

To prevent this post going too long, I will end by talking about Emerald and leave me and Michael for next time.

Emerald is...thriving.

It is hard to reconcile the image of that defiant and broken little girl in DKA seven years ago with the tall, beautiful, capable young woman that I see now. This kid was made to rise to the occasion. She loves doing school from home, having all of her classes online and at her pace. She is going out of her way to be helpful to me and remembering to be polite most of the time. Because she has a phone, she can call or text or FaceTime with her friends, so she doesn't feel like she is missing out too much on seeing them (though she does get a little blue now and again for lack of proper socialization). Honestly, I am surprised at how mature she is and I have to make sure she is getting lots of opportunities to be a kid and relax and have fun because she is only 12. (Her dressing up as Harry Potter is a pretty good reminder.)

She complains a lot of stomachaches that I am trying to keep an eye on--I don't know if it is stress or hormones or growing pains or anxiety or diabetes or dehydration or any number of things, but I have been trying to keep note and see if I can source a trigger. She still sees her counselor every other week through telemedicine. Last week she also met with the endo; her blood sugars are actually pretty good, about half the time in range, but we checked her bolus rate and realized it was set incorrectly--once we adjusted it to 1 for every 10 carbs instead of 1 for every 12, I think we are going to see those numbers improve. The one big sticking point for her in all of this has been that I get her up every morning at 8 (I know--so early! The inhumanity!) instead of letting her sleep in. I told her that it was a bummer but she had to do it because she has to check her sugar, so sleeping in really isn't a feasible option for her.

I have set up the shelves in the kitchen so that the kids can get their own breakfast from approved selections; that added freedom has made a big difference for them.

The last big news for Emerald is that she got a kitten. A friend of mine was looking for a home for this sweet little grey tabby cat. I had been hesitant to get a new cat because mine boys are old and don't take kindly to strangers, but of all things, an episode of "Cheers" changed my mind. Diane had lost her childhood cat, Elizabeth, and was recounting how important and special a pet can be during those formative years. I didn't want Emerald to miss out on that experience because I had my own pets. So I asked her if she would be interested in getting a kitty.

She lit up as I showed her the pictures, whispering "I would name her Piper..."

A few hours later, we were bringing her home.

I had nearly forgotten how feisty kittens could be. Oscar spends most of his days laying in the dirt in the sun, listening to me read to him from Pablo Neruda's "Memoirs"; Remy lays in bed until he wants a bit of excitement by relocating to the couch for a short period of time. They are basically purring potatoes with faces.

Not Piper, though. She is a pouncing, climbing, growling, hissing, darting, rolling sentient lint. She adores Michael and hates my stupid face because I put the nail caps on her.

Emerald could not be more in love.

As uncertain as I was, Emerald's reaction told me I made the right decision. Her outlook on life, thinking beyond herself to care for another living being, has improved the quality of her life so greatly. She hasn't said "I hate diabetes" or had an outburst in quite a while. She is happier than I have seen her in a long time.

I wanted to say thank you from the bottom of my heart for the outpouring of love, support, prayers, and food since my last post. It is touching and overwhelming to know that people even want to read my rambling nonsense about our weird little family, and more so that it resonates with people. So often, human struggles can feel so lonely, perhaps never more so than during a global pandemic. This week, reading comments and encouraging texts, hearing uplifting voice and seeing friendly faces has done so much for our spirits.

Thank you all.
Lots of love from all the Weardens
--Andie