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

Gabriel in Quarantine

My Dad used to say, “You can’t take your eye off them for even a minute.”

At first it was a sort of parental advice--sage experience gleaned from raising four kids of his own. Accordingly, I would roll my eyes as though I was the first to have ever reproduced and remind him (rather helpfully, I am sure) that a lot had changed since he had small kids and things were *sniff* different now.

When Gabriel came along and I was receiving this advice while cleaning up yet another destructive rendering, it was met with the exasperation of a person at the end of her rope. I was watching him constantly. Or as much as I could, as much as I had with Emerald. Something was different now.

The last time Dad ever said that to me, it was after he had watched Gabe without my mother for the first time. He looked so comically stunned that I could have laughed, his voice filled with an entirely new appreciation for the sentiment and the weight of its implication:

“You can’t take your eye off him for even a minute.”

I have asserted before that raising Gabriel is the sum of his cumulative ages until this point, and never has this been more on display than since stay-at-home orders have gone into effect.

His sleep schedule has always been unpredictable at best; we try and maintain a routine the night before. He gets his dose--one Mirtazapine (antidepressant), two clonidine (blood pressure medication to promote sleep), one Risperidone (an atypical antipsychotic to help with manic episodes--basically keep him calm enough so he -can- fall asleep), and one Benztropine (anticholinergic to counteract some of the more intense side effects of the fistful of pills he takes a day) around 7.30 at night. Because he does not have to get up to ride the bus at 6 in the morning lately, we can push that back to 8 or 8.30 in the hopes that he may sleep later, but that runs the risk of him burning through it on the front end and never getting to sleep because he is too worked up.

If all stars are in alignment, after about fifteen minutes he starts calming down and getting drowsy. We set him up in the trundle bed made up for such a purpose in my room because it is 1) cold, 2) dark, and 3) far away from the rest of the house so that our sounds of existence don’t disturb him. We change his diaper and set him up in bed with a weighted blanket and a heavy quilt, the room cold enough that it is slightly painful for me to be in there. We turn Disney’s “Alice in Wonderland” on for him. Michael or I will have to usually hang out in the room nearby so that he doesn’t get up and wander off but within an hour or so (before the movie is over) he will usually be asleep.

This routine in and of itself is an improvement.

At some point during the night, he is going to wake up for whatever reason. The two main issues are either he pees out all over the bed and wakes up cold and wet, or else he gets hungry.

Regardless, he stalks the house loudly vocalizing (repetitive sounds like “ah ah ah” or undulations of “ahhhAHHHHH! ahhhhAHHH!” not unlike an exceptionally loud crow) in search of a screen to watch and something to eat.

Therein lies the heart of my problem.

He is relentless in his efforts to obtain these two, as I hope to express adequately in this post. To the screen first: he has an apple device set up to be both a communication device and to allow him to complete his school work from home, but it also serves as an entertainment/free time screen for him to watch his shows from.

The school work has been an odyssey, as I am sure it has been for most parents, school personnel, and really truly anyone affected by it. When it became apparent that students would be unable to return to school, teachers had to rush to provide schoolwork to complete from home. Special education was an entirely new consideration, but ended with Gabriel receiving a paper packet hand delivered by a couple of paraprofessionals that had worked with him. This packet was quite thick, as it contained stories, worksheets, projects, and explanations for parents.

Dutifully, I would go through a portion of the packet every morning with Gabe to the best of his ability and focus. It wasn’t much, but it was an attempt to prevent some regression that we are undoubtedly going to see when he returns to school, whenever that may be.

Then we were informed that each week for the final six weeks, we would need to turn in one completed assignment for each subject for each student. This has been a logistical nightmare.

For one, most of Gabriel’s work is centered around “adaptive behaviors”, or functioning independently in the classroom. Things like expected classroom behavior--sitting still, attending to a task, transitioning from one activity to another, following rules, etc--and activities of daily living such as using the toilet, brushing his teeth, and washing his hands. Not only do those not actually fall within traditional subjects that I can submit as proof of work, I can’t exactly send a picture of Gabriel sitting on the toilet to his teacher. It would not benefit anyone.

Another issue is that all of his classwork is modified by a special education professional in his Individualized Education Plan (IEP). I could go through and work on each of those goals as written in the ARD paperwork, but a lot of those are hard to visually express in a meaningful way to submit to the teacher as well.

Gabriel is not the only child that is required to send work, either. So I am trying to figure this out for three very different students across some nine teachers, including physical education and I am not even entirely sure what they are looking for there.

All of that is fine. I can troubleshoot it. But once the screen is pulled out for Gabriel to do his work, he is going to scream and fight and try hard to get to be able to watch his shows, which results in injured adults and damaged devices we can’t replace.

Whenever I do not want him to have screens, I charge it in the garage so that it is inaccessible (as long as he doesn’t know where it is). That does not deter him, however, and he ransacks the house and steals whatever phone or tablet he can get his hands on, regardless of who it belongs to. There is a wake of destruction in his path. If he can’t find anything at all, he yanks and tugs and yells trying to get one of the adults in his life to locate one for him.

Not ideal, but it is something we have lived with long enough at this point that I actually barely notice it anymore.

The larger of the two issues is the food.

The Risperidone (atypical antipsychotic) has a known side effect of “increased appetite”. This phrase does not adequately describe it. When I say he acts like a starving, feral creature, I say so with the greatest sincerity. Since he started taking it at three years old, he has become a racoon thieves food from other people’s plates and hands, off of the stove or straight from serving dishes, no matter how much we try and dissuade him. Scooping handfuls up, he runs away stuffing it in his mouth because he knows what he is doing will get him in trouble.

Between meals, he raids the pantry, fridge, even the medicine and spice cabinets and takes whatever he can get his hands on. This isn’t a once-in-a-while thing, either--several times during this break, I have awoken to him having eaten two weeks worth of groceries for six people in just a couple of hours before we got up for the day.

First the pantry: it is a long cabinet with five deep shelves and one tall door. We started with using industrial zip-ties to cinch the door of the pantry and the fridge closed. Gabriel learned that with enough force, he could pull the door open and the zip tie would break.

So I went down to Lowe's and found this solution:

It worked for about a week or so. When he realized it would be harder to get into the pantry, he focused his attention on the fridge. We have a side by side door set up so it is hard to close--we used to be able to tie plastic Walmart bags around the handles and that was mildly successful until he just started ripping them off. 

That was taken the morning AFTER I had done full two week shopping. I was crushed. Not only was it hundreds of dollars worth of food gone, but I would have to go out all over again and there was no guarantee he would stay out of it. 

I went back to Lowe's and discussed my problem with a couple of employees who set me up with a 5 3/4 inch steel keyed padlock that goes around both handles. He can only open it a crack, not enough to get his hand into. 

Ths stymied, he redoubled his efforts toward the pantry. 

Then he found out that if he pulled on the very bottom of the door of the pantry, he could pull it open just enough to grab packaging from the bottom shelf and yank it out. So we put all the food in plastic storage bins with lids so it would be harder to access quickly, buy us time to get in there before he stole anything. 

Pulling on the side of the door opposite of the lock, he yanked hard enough to pull the hinge off, giving himself access to the foods on the bottom shelf. 

Tula started out by tattling on him when she saw he was taking food, so he figured out he could give her a portion of whatever he stole to buy her silence. It was quite effective, and her blood sugar would skyrocket. Emerald and Benjamin would try to stop him when they heard sounds of thievery, but they are just as frustrated as we are. The one silver lining is that he heard a word often enough that he started saying it verbally recently: whenever he was caught, he would skitter away yelling "OUT! OUT! OUT!" Like, I'm getting out, you don't have to tell me. 

If the fridge and pantry were too much, he would get into the spice cabinets. He ate a bottle of dried chili powder and another of Parmesan cheese; the cholula and flav-a-col were not to his liking, so he dumped them out all over the furniture and carpet in the playroom. Packets of taco seasoning and gravy mix were better, and he tears them open with his teeth and pours what he can into his mouth. 

Or he will get into the medicine cabinet and eat a fistful of gummy Melatonin vitamins, a bottle of tums chewables, take a swig out of the DayQuil. Also did not taste like he was hoping, the DayQuil was also emptied on the floor. That room is getting redecorated a rather unpleasant shade of orange. 

Last night, he found his way into my bathroom and sampled my sugar body scrub. 

I am at the end of my creativity, feeling discouraged and impotent. What else can I do? This has become a full-time job, even with three adults in the house (Gabriel's personal care assistant Miss Stacia is still coming to work with him in the morning) and two very beleaguered siblings watching him. In the interest of keeping this post a manageable length I have not touched on the aggression or fecal smearing, both of which are certainly problematic but are not the primary concern at the moment. 

It is behavioral. We have tried leaving cheap and acceptable foods out for him like vegetables; for our efforts, we have torn up food strewn about the house. 

And if we are successful and completely lock down everything that could possibly want to eat?

He leaves the house and goes into neighbors' homes looking for food. 

That is our front door.

For the most part, we are doing alright. All of us are healthy, we are adjusting to quarantine just fine. It is actually kind of nice getting to spend time with the kids, and the weather has been so beautiful. We go for walks and look at flowers, play in the backyard. I got a little lavender tree on clearance and the kids have enjoyed taking care of it while petting its soft velvety leaves. 

This issue with Gabe is just taking up so much processing power that I have little time for anything else. Michael and I are exhausted. 

So here is me reaching out, asking for an outsider's perspective--seeing if anyone has any ideas we have not tried, or any advice. We would greatly appreciate it. 

Thank you for reading, and for your patience between posts. 

--Andie 

Why I’m Sitting in a Hotel Right Now

This week has been somewhat insane for the Wearden family.

I had been looking forward to Monday morning for a while. Gabriel had been home for a whole week BEFORE break; then we took the long road trip to Arkansas for a week and the long journey home. It felt like I had been chasing kids for 14 days straight and I was ready for them to go back to school.

Gabriel was so excited to go back, pulling on his backpack himself to get on the bus at 6.45. Michael ushered the other two to the car to drop off on his way to work.

Tula and I settled down with a blanket, my coffee, and a (non-dairy) yogurt parfait to enjoy our peace…

And my phone rings.

Emerald had forgotten her PDM at home, and her nurse needed new test strips. It is ten till seven.

Michael is still in the car so he swings back by to get it; I run the PDM out. They’ve got enough test strips for today, so I can pick some more up and send them tomorrow.

It is 8 and time for Tula’s lantus; while I’m trying to wrestle her into sitting still, my phone rings again—Gabe’s school.

I answer it distractedly and put it on speaker phone.

“Hello?”

“Hey Andie, this is the nurse. Gabriel has a rash.”

I have Tula pinned down, sandwiched between my legs and under one arm while I hold an exposed needle aloft. Luckily today she finds this amusing rather than infuriating; she is squirming and laughing, interpreting the pinches to her chubby thighs as tickles instead of site preparation.

“Hmmm. A rash”, I say, rather intelligently.

“Yes, it is all over his neck and on his face and torso.”

“That sounds…” I finally get a pinch of excess thigh and inject the insulin. Tula screeches in furious anger, bucking for the full ten seconds I have to keep the needle in. One shot down, one to go.

“Yeah, you’ll need to come get him.”

“....right. ….why again?”

This poor, long- suffering nurse finally gets through to my distracted brain. I abandon my untouched coffee and uneaten parfait, dress myself and the baby, and get us in the car.

Tula had a doctor’s appointment that morning scheduled for 10 because she had a circular rash that looked like ringworm. It had started while we were on vacation; the oncall nurse advised we start over-the-counter antifungal and bring her in when we got back, but the rash had worsened considerably. It now spanned most of her abdomen and was causing her some distress.

I called my sister Amber (who works at the pediatricians office) and ask if we could sneak Gabriel in, too. It is turning out to be a rather rashy Monday.

We drive the 15 minutes across town (it is a rather small town) and walk into the front office...just in time for a Fire Drill.

Ushered back into the foyer to wait out the drill before we can retrieve my son, I hear over a staff member’s walkie-talkie that there is a child reluctant to leave the classroom. We end up staying there for thirty minutes for the situation to resolve itself.

Gabriel sees me and his eyes fill up with tears, babbling soft protests. He was so excited to be back at school, and didn’t know why Mommy was coming to get him.

He went with me, dejected but without fight.

I decide we deserve a treat—coffee and bagel from Starbucks before our appointment. It seemed to brighten everyone’s mood.

The doctor sees Tula first and says her rash is caused by eczema; not uncommon in children with food allergies. She instructs me on how to treat it (grease the baby up multiple times a day with this cream) and examines Gabriel.

It is in patches all over and looks like hives; could be caused by a virus or allergies. Give him some Zyrtec and Benadryl until it clears up.

He was cleared to go back to school after the appointment, but we had lab orders from the geneticist as well as annuals from his pediatrician, so I decide to keep him out and try to get those handled.

Now, there are two important things for you to know about Gabriel:

1. He has a remarkably high pain tolerance, and
2. He really, REALLY hates to be restrained.

Because he is on these medicines for the symptoms of his autism, he has to have annual blood work. It has consistently been a living nightmare, for both us and the poor phlebotomists trying to do their job. He fights and kicks and screams and headbutts and pulls the needle out because he doesn’t want to be held down. If we don’t hold him down, he won’t let them stick him and we can’t get the lab work done.

Needless to say, we had been looking for reasons to put it off.

I pick up Michael on his lunch break to go to Quest Diagnostics. Somehow we have to get him to stay still long enough to get 7 vials of blood, and we aren’t certain how to do it.

As much as we were dreading this, it was, by far and away, the best blood work we have ever gotten with Gabriel.

This clinic is where we go to get the girls a1c done every three months so they already know us and we know and trust them. I set Tula up watching Wiggles on my phone and eating Cheerios on a seat behind me. Michael sits by Gabriel, holding his legs, trunk, and left arm; a phlebotomist is holding the right arm still. I stand in front of him with a box of Bertie Bott’s Every Flavor Beans (so sorry, Emerald—Mom will replace your candy!!), popping jelly beans into his mouth one right after another while the second phlebotomist deftly fills all seven vials.

Michael and I both walked away completely amazed that it worked this time so smoothly. Every other time, equipped much in the same way or with a screen for him to watch, we still walked away having had to try several times to get the needle in, one of usually has bruises on our legs where he’s kicked us or on our face where he’s slammed his head back. It really was a testament to how excellent these women were at their jobs. Thanking them profusely, we leave to the rest of our week.

Tuesday was relatively quiet, a blissful reprieve before things got wacky again. I deep cleaned the guest bathroom and organized the diaper closet. It was a good day.

Wednesday, I decided to keep the cleaning and organizing train rolling by tackling Emerald’s room. I had those cool black thermal curtains from her room in the old house we hadn’t hung up yet, and this pretty scrap fabric I was going to fancy up her desk and nightstand with. She was going to be so excited when she saw it!

I had been cleaning in there for about a half an hour when I took the curtains down—the ones that came with the house that we had just left up.

They were absolutely, visibly infested with bedbugs.

With more calm than I thought I could muster, I placed the curtains in a box, taped the box up securely, and threw it in the trash. I then drove Tula down to the playground at the church to play. Internally, I was screaming one long sustained note of horror.

Bugs are not my favorite.

There had been a moment a while back where we thought we might have bed bugs. We called an exterminator to come and check; he said he didn’t see any evidence of them, but to call him back if we did. Just in case, I had pulled all the bedding and our clothes and fabric furniture coverings and stuffed animals, washing them in hot water and drying them in very high heat.

I don’t mess around with bugs, yall.

Still, we didn’t see any evidence of bed bugs. Emerald’s room took on this odd smell; I really didn’t care for it at all, but we couldn’t find the source of the smell.

Then Gabe had that rash on Monday. It was probably bed bug bites.

Michael called the landlord who said to trash all the curtains and he’d buy new ones, as well as send out an exterminator to check the house. It was a generous offer.

We sealed off Emerald’s room and had her sleep on the couch for the night.

The next day, skin crawling with the idea that creepies have made their nest here in my dream house, I tried to get as much done as I could. I addressed some more Christmas cards and got them in the mail. Played outside with Tula. Rather a lot, actually. It was easier not to think about in the yard, and it was a pretty day.

At four, pest control showed up. They immediately declared Emerald’s room infected, then checked across the hall. My room and bathroom seemed clean. Slowly, they made a sweep of the house before giving me the bad news:

The whole house was infested.

They were visible in the ceiling everywhere, even the bathroom, except my room. It was going to have to be a aggressive full house treatment where the family has to move into a hotel for a few days, after we had completed a pretreatment preparation list he provided.

It was brutal. The protocol called for us to trash “anything you don’t love” that’s made out of fabric—curtains, clothes, stuffed animals, pillows, bedding—should be trashed. Our mattresses, which we had been meaning to replace anyway as they were three-time hand-me-downs in now shameful shape, had to go. Couches, chairs, with fabric covers he said should go because anywhere a bed bug could hide threatened re-infestation after treatment. Anything we wanted to keep had to be washed in hot, hot water and dried on the highest heat setting, immediately put in a black garbage sack and tied off, then put somewhere safely away. Besides that we had to move anything we wanted to keep to the middle of the floor, vacuum everywhere, including baseboards, and clear off shelves.

The treatment alone was very costly and would need two follow-ups.

Michael talked again to our landlord who said he was coming out to check out the house and talk to pest control. We would need to do everything to prepare the house, but he would cover the treatment and a hotel for us. He also offered to give us our deposits and rent back so we could move.

Our first choice is to stay. We love our house. We love the neighborhood.

Friday, Michael took off work and we worked as hard as we could from early in the morning until dinner time, but we got it all done. We paid exorbitantly for someone to haul off our mattresses and most of our furniture. We filled four dumpsters with our belongings. We scrubbed and cleaned and moved things until it looked like we were just moving in. My cats went to stay with my sister, and my brother kept the dog. Mom came and got Emerald and Benjamin.

Exhausted, we came and checked into a hotel in town.

The landlord will be here today to go look at the house. If all goes well, we can go back Tuesday.

What is amazing to me is how this hideous calamity happened...but we were able to weather it. Sure, things might be tough for a while, and we’ll be back to sitting on the floor (again).

But God is faithful. He provided for us abundantly, and we believe that He will continue to do so. This year has been a catastrophe, from ringing in the New Year at the hospital with Tula in DKA to losing my beloved Daddy… this bug situation just felt like par for the course. Through it all, our family and friends have surrounded us with love and support, blessing us with their community.

So, as I lay here in a hotel bed with Gaby on one side and Tula on the other, watching Veggie Tales “Jonah” for the umpteenth time, I am not stressed, and I do not worry. I will move as God asks me to move, and I will trust that He will do as He has always done—taken care of the Wearden family.

—Andie

Thanksgiving Trips and Anniversary

Gabriel stayed home the entire week before Thanksgiving.

That Sunday night (the 11th), he had not slept even one minute, despite having his evening dose to help him fall and stay asleep. We didn’t want to send him to school where he would either be drowsy and not learn or be wild and difficult for his teachers to control, so Michael and I told the bus he would be staying home that day.

In the two minutes it took to walk out to the curb, talk to the driver, and come back, Gabriel had already curled up in a blanket and fallen asleep under the recliner.


He ended up napping there all morning, waking briefly to move to the chair at lunch and fall back asleep. By the evening, he had a fever--101.9--and his cheeks were flushed. Most concerning, he had no appetite, having only picked at meals for the last few days. Normally an exceptionally voracious eater, this was fairly suspect.

Tuesday we kept him home again, this time to go to the doctor to check for strep or flu. I was dreading that it was going to be flu because he gets it every year, vaccine or no, and ends up staying home sick as a dog for two weeks. Being out of routine that long means that it takes about another two weeks to get back into the swing of things at school. It is a big ordeal.

That morning, we were scheduled with the new pediatrician at the practice--a super cheerful guy that worked really well with Gabriel--that told us he had an ear infection, and prescribed amoxicillin. 

I called the school to let them know where Gabe was and that he would not be back at school until after the break, because the antibiotic was going to mess up his stomach for a few days, and he had a specialist appointment in Lubbock on Thursday and a field trip he would not do well with on Friday. Honestly, I wasn’t looking forward to having the two most difficult children home all week, but knew that I could handle them. Gabriel had been especially low-key because he wasn’t feeling his best; he mostly just wanted to cuddle with Mom.

Thursday, we got up and on the road at 7 am. 

We have to go every three months to see his developmental pediatrician, who advises on and oversees his progress in regards to his autism. On the drive up, they both slept until Post where we stopped at Sonic to get “tay tots” (a new word for Tula) which held us over the last hour. We pulled into the clinic’s parking lot at 9.45 for our 10 am appointment. The office staff is super efficient, aware of the limitations of their patients’ tolerance levels, so we were seen and out by 10.15.

With nothing else to do, and needing to get back in time to get Benjamin and Emerald from school, we got back into the car and drove straight back home.

The drive back was more restless; Tula was tired of being in the car and Gabriel was annoyed that Tula was being loud. To keep the peace, I talked nearly nonstop, describing in my “Tour Guide Barbie” voice what they could see outside the window.

Friday was dedicated to cleaning and getting ready for our trip to Searcy.

Michael’s parents had moved this summer, after getting jobs at Harding University; this would be our first time visiting them at their new house, and first vacation in Arkansas. Compared to our trip to Lubbock (six hours, round trip), the eight hours each way was daunting, but we were really looking forward to the break.

Saturday, Michael worked the football game from pregame checks at 11 am through the game, getting home at 6.30. Unfortunately that meant that he missed Thanksgiving with my family at Mom’s house. It also meant that I had to oversee all the cleaning, laundry, packing, and preparation for our trip without his assistance.

Which admittedly is the case whether he is there or not.

I packed breakfast (cinnamon life cereal) and lunch (uncrustables, chips, water bottles, carrots and celery) for us to eat on the road, calculating carbs and writing them on individual lunch bags. Glo sent us printouts for the kids to play the license plate game and interesting things to keep an eye out for as we drove; I added a couple of new magazines they had not yet read, blank paper, and crayons. There was a little basket of Tula’s favorite toys and books. I loaded up the clothes, diapers, pull-ups, wipes, changing pads, and anything that could be put in the car early.

Emerald had a girl scout meeting that my mother took her Saturday morning. When she got back, she told me that the screen to her PDM had cracked.

The pods that we put on her to administer her insulin are disposable--she wears them for three days, then we peel them off and toss them in the trash and put on a new one. The Personal Diabetes Manager, or PDM, is how we communicate with the pods. Without the PDM, it will continue to give her the basal insulin she gets throughout the day until it is time to change the pod, but it cannot administer a bolus for meals. At $800 a pop, insurance does not like to cover more than one, so their sage advice is:

Don’t break the PDM.

It was unusable; we had to peel off and toss the pod she was wearing and switch back to MDI (multi-dose injection, or many shots throughout the day). Luckily I had stockpiled insulin in the fridge so we had all that we needed. I called to let her endocrinologist know what was going on and to confirm that the home orders we had were still accurate for dosing. Then I called the Omnipod company. Their customer service was exceptional. I worked with them to replace it under warranty for free thankfully. If we had to replace it out of pocket, she was likely just going to have to stick to the injections for a while. Omnipod over-nighted a new PDM to Ken and Rhonda’s house in Arkansas, to arrive on Monday.

The next day, we packed the remaining things in our van--chargers and electronics, toiletries, insulin, medications, dosing cups, syringes, test strips, pen needles, alcohol swabs, kits, and children. Basically essentials we could not easily replace while gone if we left behind.




I drove the first leg of the trip, from Abilene to Weatherford, because it is a route I am familiar with. It is straight on I-20, on the way to Granny and Papa’s house in Ponder. There, we filled up with gas and switched so Michael could drive us through Dallas and get on I-30. Those two roads took us all the way to Searcy. We had our little sack lunches and traded off again in Mt Vernon at McDonalds where we stopped to get chicken nugget snack. Michael took the last leg once we were in Arkansas. The two hour shifts seemed to work well so that neither of us burned out from driving, or from keeping the baby entertained.


Before, I couldn’t have told you what I imagined Arkansas to look like. I was surprised it was so beautiful, how it gets all done up in fall colors. Autumn is more of an abstract concept than a reality in Abilene and Lubbock.


  

We stayed with Ken and Rhonda through Thanksgiving--we had a lot of delicious food, including stuffing-stuffed mushroom caps, balsamic root vegetables, and roasted brussel sprouts. We took our family pictures at the beautiful Harding campus. Emerald told me “I don’t feel like smiling today” so we have our traditional photos with her scowling, and then some more casual “candid” shots where she is less moody. Gabriel struggles sitting still for photos too; half the pictures of him screaming, signing “stupid”, and running off to the horizon with a pilfered phone.

Friday morning we loaded up and drove back home to have a weekend of rest before having to go to school and work on Monday.




Saturday was our 11th anniversary. It was a running gag that I can’t ever remember what day our anniversary is on because we got married the weekend after Thanksgiving, which is not always the same date. To combat this after the 7th anniversary I had missed in a row, Michael made it the pass code on my phone so I would have to type it in several times a day to jog my memory.

Try as we might, neither of us can remember what we did last year for our anniversary. Which is kind of bad, but then you remember--it was our tenth. That’s a big one! How could we forget? Facebook was no help, and there are no photos to document the day. As far as we can recall, we used a gift card to Outback Steakhouse that Ken and Rhonda had given us to get take out and eat at home.

This year, Jarrod came over and watched the kids. Michael had looked up community events and saw there was a small business fair held at Play Faire Park, a Putt Putt Golf course. It was hard to find, this surreal little location hidden away we had never seen before. There was a silver dragon; it felt like the whole place had just materialized when you got close to it, complete with a little koi pond right in the entrance. An all tie-dye gift shop to the left contributed to the dreamlike quality of the place. We walked around and looked at what the vendors had to offer; a jewelry maker stopped us and talked about dog breeds for an extended period of time. Vendor booths, I have read, have the same rules as Pokemon trainers--don’t get too close and don’t make eye contact.

For lunch we went to Abuelo’s, a place we know can accommodate my finicky diet. Michael got a beef burrito with chile con queso and cheesy mashed potatoes; I got veggie fajitas with black beans and cilantro lime rice.

Afterwards, we went to The Gathering Place’s new location. They are a tabletop game shop that sells and hosts all sorts of games. Michael likes the Warhammer 40K miniatures, but they can get so costly, so mostly we just looked. They have a lot of role-playing games; earlier this year, we played a family campaign of Star Wars that the kids got a real kick out of. We have been meaning to get back into it, but if you aren’t going to buy the stories you have to write out the campaigns themselves and that can be a time commitment.

Drawn as always like a moth to a flame, I headed straight for the clearance bin. There are so many treasures you never even knew you needed now that they are 70% off. That day, they had a special on “mystery games”--games wrapped in brown paper that have limited information on them like how many players are required (3-6) and how long each game lasts (30 minutes). I got the heaviest one because they all cost the same $35, thinking it would be fun to try for the kids. When I opened it up, I found out it was a model UN game the kids cannot stop talking about that is selling on Amazon for $180 currently, so I think I got a good deal. 

We went home to hang out with the kids after that. It was a beautiful day; I tried to bribe Emerald and Benjamin into raking the leaves but for some reason they kept playing in it.

I had originally intended to write about our hectic Monday today but ended up getting pretty side tracked. It was a good holiday. I am tired and glad I am back home, ready to tackle all the things that need to get done before Christmas. There is a lot. Goodness.

It is about that time to go pick up the kids again--Happy Thanksgiving from the Wearden family.

--Andie