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

Diabetes Awareness Day

Diabetes Awareness Month.

I mean, I guess. Everything has a month now, and seeing as there are only 12 of them, we will have to be content to share November with Alzheimer's, Crohn’s, Huntington's, lung cancer, and epilepsy (among others). Normally, I let it pass without comment--plenty aware of the sugar babies, thank you very much. Plenty aware, indeed.

So, why talk about it now?

Most days, I actually feel...lucky. I mean, it could always be worse, right? It’s “just” diabetes. Something like 371 million people live with it every day. Big whoop. Our family has to understand, but why does anyone else? It honestly will not affect their lives--the disease is not communicable, they don’t have to guard themselves against it. It does not prevent the girls from going to school or participating in activities. According to social security guidelines, it only constitutes a disability until the age of six, a bafflingly arbitrary cutoff they cannot justify when confronted.

Often, I feel like a whiner. Like I go on too much about it. Maybe it isn’t so bad? They don’t have to have surgery, it isn’t cancer. There is always something worse out there. This is a condition they can live with.

Well, yes. I can be thankful for that.

It will always be there, though. There is no cure. The cynic in me asks: where would the motivation for finding a cure be, when companies could milk this cash-cow condition for decades? Surely no one is that wicked though.

I do not have diabetes. Ran a stint with it, back during pregnancy. Didn’t really feel like it was my jam. I cannot speak to the disease itself, as I am not the one suffering from it. So I speak only as entrusted courier, tasked with shouldering this burden until the owners are able to take over it for themselves.

The damage dealt has two particular flavors: the initial impact, and the residual trauma.

When Emerald first went into the hospital in DKA, I was unable emotionally to fully process it. Michael and I were at war with life, and life was effortlessly winning at every juncture--every move, we were outplayed, every day felt like an ongoing calamity. Between struggling with Gabriel’s diagnosis of autism and his issues related to it, to to my own tumultuous health issues at the time, Michael working long hours six days a week to provide for us, we were doing the best we could to batten down the hatches and hold on until...until when? We didn’t know what lay ahead or when we would get relief.

That’s how I explain how we missed it. In truth, we had no reason to be looking for it in the first place. There was no indication that she was going to develop this disease, and the onset is so, so sneaky.

Emerald would get up in the middle of the night, asking for glasses of water. As kids do. We started letting her keep a bottle of water by her bed, and that seemed to solve that problem.

Then she was getting up several times a night to go potty. With all that extra water she was drinking, it made sense she was peeing more. Go back to bed, honey.

She had always been a little on the chunkier side--my first three were 99th percentile across the board in height and weight. Her sweet baby fat started melting off, coinciding with Gabriel thinning out as well. Neither were good eaters, so nothing was setting off alarm bells yet.

I suppose the most telling thing was her sudden dislike of going outside. She would complain, nonstop that she was hot, thirsty, tired. I would tell her how good fresh air and exercise were for her, and that we would go back in a bit. Off she would slink to lay down in the shade and do nothing. What a dramatic little person, I thought, as I pushed Gabriel on the swing.

All of these disparate pieces, managed from moment to moment, were not coming together to form the bigger picture. So we carried on as we always did.

Emerald was five years old. The doctor at the hospital told us she likely had the condition for three months before she went into diabetic ketoacidosis (DKA), which is what had brought us to the emergency room that day. It had caused her weight loss (about 20% of her total weight), thirst, lethargy, and frequent urination.

She wore her favorite dress--a dark green one with Winnie the Pooh on it that got torn while the hospital staff worked on her. It was probably mendable, but I threw it away because I couldn’t bear looking at it any more. Her hair was still long, wispy little mermaid curls at the end, which she hated because her head was too sensitive for me to brush. Already so fair, her pale skin was mottled with red.

My little strawberry girl.

The first night was rough, but we made it through. After four days in the hospital, they came to tell us she could go home.

The news of which caused me to experience my very first panic attack.

Michael and I had met with diabetes educators, the endocrinologist, dietitians. They want to make sure you feel competent and confident in handling this condition. I didn’t feel confident and competent; I felt overwhelmed and inadequate and doomed to fail.

Emerald sobbed and begged not to be poked any more. It was heart-wrenching. It wasn’t something you could explain to a five year old, except to say “Mommy’s sorry, I’m so sorry.”

I went for a drive to the pharmacy to pick up her insulin for the first time. Insurance had not kicked in yet; the hospital had helped us submit paperwork so she would be covered, but it would take awhile to process and we had to pay out of pocket to get the medicine tonight. My grandparents had sent us money when they heard, so we were able to afford the $600 for two tiny vials.

The song “Stubborn Love” by the Lumineers is what brought me down. It was playing as I was driving away, the line “so keep your head up, my love”. I sat in the parking lot and cried until I was sick.

I was barely holding on as it was. Gabriel was aggressive, destructive, and wild. Most nights we were managing a loose four hours of disjointed sleep, or none at all, an admitted improvement from when he was younger. My days were filled with therapists and specialists and medications and trying to hold our fractured lives together with my bare hands. I didn’t have the experience or the knowledge to do this.

You don’t really get a choice on what you can handle and what you can’t. This is what we were given, so we made it work. I packed my feelings about that day into a box and shoved it as far back as I could so that I could muddle forward for my family. After a six-month stint on Zoloft, Emerald learned emotionally how to navigate her new “normal”. She wasn’t happy about it, but she coped, which is about the most I felt we could ask for.

Maybe it got too easy. Maybe I got too comfortable.

More likely, it had nothing to do with me--these things just...happen.

Four and a half years after Emerald was diagnosed, her infant sister Tula went into DKA.

The signs were there, again. I missed them all, again. She wanted to nurse a lot more than usual but she was showing signs of dehydration--sunken eyes, chapped lips. But how could she be dehydrated if she was having so many wet diapers? Her little frame, the smallest of my babies, felt like just skin and bones.

Didn’t click. 

  

Tula’s ended up being more traumatic for me than Emerald’s. At the time, Emerald felt so small, so young, but she has always been exceedingly bright and independent. She picked diabetes up like it was nothing, learning to manage it with more maturity than a child her age could. While I was not expecting either, this somehow came as more of a shock because she’s just a baby. How could we possibly miss it twice?

Tula wore this gorgeous purple striped Kickee Pants swing dress when I took her to the hospital. It had to be removed when she vomited all over it. I washed it and let it hang in the closet for months before giving it back to Aunt Amber--I couldn’t bear looking at it any more. There are a few memories like that, those sensations that cause white hot pain to shoot through me, to relive the terror of that horrible day. It takes my breath away when I hear the song “The Words I Would Say” by Sidewalk Prophets because it was the one that played in the ambulance to Cooks. The smell of the Pantene conditioner that I had used on her that morning turns my stomach now. Little snippets that take me back to that moment when it felt like the world stopped turning.

It will fade, I know. Eventually I will stop waking up to feel for her pulse in the middle of the night, or lay there watching her chest rise and fall. Pictures from the hospital stay will no longer knock the wind out of me. I will be okay.

Even then, my girls will still have to deal with this. With the trauma and the uncertainty, with the powerlessness you feel because of unpredictable highs and lows that you have no control over. Long after I am sleeping through the night, they will still be getting up to test themselves, realizing they miscalculated and overdosed to threat of their well-being. It will be their job to budget for grossly overpriced insulin or decide to lethally ration themselves because they can’t afford it, a choice I hope they will always bring to their parents first so we can prevent it. And to live, day in and day out, with the fear.

Because it never was about me. I can tell you how horrible and how hard and how damaging it was for me, but I am not the one who gets the pokes, the shots, the blood work. I am not the one sitting out at PE, watching my friends play, the only one at the birthday that gets a pickle instead of a slice of cake because my blood sugar is too high. The consequences for being wrong are not mine to deal with--I am not at risk for going into the hospital if I go too high, or the one that drags myself into the kitchen for orange juice because I’m too weak to walk. Next week while we are celebrating Thanksgiving, I won't have to watch everyone else celebrate to excess while I cautiously calculate and ration how much I am allowed to eat.

Today--November 14--is World Diabetes Day. You are supposed to wear blue, which is oddly reminiscent of world autism day, but there are only so many colors, we have to share those, too. It may not be the worst disease out there. There is no surgery, its not cancer. I can acknowledge:

We are lucky.

--Andie

The Kids Today: Master Post

In the past, I have written an individual post entitled “The Kids Today”, giving a run down of stats. It started out very cute and quaint, back in the days when I had but two children. Currently, I am Mother of Legions, boasting a host of the most darling tater tots to have ever wandered the planet. If you cannot tell, I am exceedingly proud of my brood.

In either case, I have decided doing individual posts to update on stats and interests was just three too many; thus, we will be condensing it into one The Kids Today: 2018 Master post!


Current ages: Emerald is 11 and in fifth grade; Gabriel is 9 and in third; Benjamin is 7 and in first; and Tula is 19 months old (as of this post) and all up in my business while I am trying to type this. 

Nicknames: as a unit, I generally call them squirrels. I noticed earlier today that I call each of them by a food-related pet name. Emerald is Strawberry because she was fuzzy and red when she was born. Gabriel is Tater Tot, because I am Potato and he is mini me. Benjamin is Vanilla Cupcake because he came out smelling like a vanilla cupcake. And Tula is Noodle, because her wacky blonde curls look like a bowl full of ramen.

Favorites!

I have asked the kids that are capable of it to answer these questions, so truly, I do not know what they have to say. Hopefully it goes well. 

Games

Tula is a baby, therefore she likes Peek-a-Boo, hide and seek, and really generally anything in the whole wide world just so long as you are paying attention to her.

Benjamin wrote: My favorite game is Monopoly because it is fun. I like to be the Hat.

Gabriel really likes tickle games--he puts Michael’s hand over his face and Michael gently shakes Gabe’s head while covering his face. He thinks it is really funny.

Emerald wrote: My favorite video games are currently Minecraft, Mario Run, and Animal Crossing: Pocket Camp. My favorite board game is Clue. At school, my “group” is currently playing this magical game about elves and fairies and horses and Lord Voldemort. Don’t ask.




Activities

Tula wants to be outside all day, every day. She likes to dig in the mud and lay on the trampoline and have her siblings tote her around in her little red wagon. When we have them, she likes coloring with chalk on the sidewalk and blowing bubbles, too. Like Emerald at that age, she can be happy no matter where we are, but she is most happy outdoors.

Benjamin: Creating. I like making board games, building houses, cardboard crafts. {Andie’s commentary: Benjamin is imaginative--he builds with legos and blocks and kinex; no cardboard box is safe in our house because he will be transforming it into something. He earned money dog-sitting for my mother and used that money to buy a hammer, nails, and sandpaper. Whenever he gets a chance, he likes to go to the garage and sand the wooden pallets that we put out there for him. He says he is going to build a tree house when he can get all the wood smooth.}

Gabriel: Gabe seems restless and aimless a lot of the times, almost haunting our house wandering from room to room. He still loves to jump on the trampoline and takes extra long showers; he would swim a lot if we had somewhere we could take him to swim. But when he is home, he has trouble settling to anything.

Emerald: I like spending my time reading, writing, and pretending to strum on my cheap fake guitar. I also like Sudoku.




TV Shows

Tula is all about them Wiggles. We tried it at the suggestion of a friend to distract her when we had to do finger pokes or insulin shots, and frankly it has been a lifesaver.

Benjamin: BATMAN. The cartoon one.

Gabriel: Gabriel, unsurprisingly, loves to watch...VeggieTales. I know! I can hear your collective gasp from here. It has only been his favorite since he was first allowed to start watching tv. He can also get behind some PBS shows like “The Cat in the Hat” and “Super Why”.

Emerald: Pokemon is a big favorite of mine. I am also into Cartoon Network Shows such as Steven Universe and Teen Titans GO!

Food

Tula’s doctor recently asked what she eats at a doctor’s visit and I totally blanked. This kid eats Guacamole and Avocado like a fiend. I mean, she will fight you for it--she once slapped me in the face for it. She is also a big fan of sausage links, mashed potatoes, and frozen mixed mexican veggies.

Benjamin: STAKE. {Benjamin likes meat, except turkey which is the only food he insists he does not care to eat. I do not force the issue. He is a super agreeable eater for the most part. His favorite is spicy foods; he always asks me to get him spicy cinnamon or to remember extra salsa.}

Gabriel we got lucky with--he is a good eater. He eats well in both variety and quantity. His favorites are beans and rice, cornbread, skillet potatoes. Simple tastes.

Emerald: I don’t really have a favorite food. Spaghetti is still a big “yes” for me. I also LOVE lemon.



Movies

Tula likes “Madagascar 2”, but she is a baby and doesn’t watch movies really.

Benjamin: Incredibles 2. It used to be “Nightmare Before Christmas” but I liked watching The Incredibles 2.

Gabriel’s tastes are pretty steady--he still likes Disney’s “Hercules”, “Mulan”, and “Robin Hood”, as well as Toy Story 1 & 2 and Monsters Inc. We have them in a pretty tight rotation.

Emerald: I’m not really into movies but I like Incredibles 2.

{Can you guess what we just watched a couple of days ago?}



Songs

Tula is all about “The Itsy Bitsy Spider”. That is straight up her jam. She does the little hand motions and it is just the cutest thing you have ever seen. When we are driving, she likes listening to the 70’s station--particularly fond of Fleetwood Mac, Bee Gees, and Crosby Stills & Nash.

Benjamin: Blessed Be the Name of the Lord. {So Benjamin is my musical one; he is currently writing a Blues Opera that he often sings pieces of to me. It helps him process his more complex emotions, I think. Michael located a first gen ipod not too long ago and loaded it up with music; that makes Ben so happy. He likes music from the 60’s station, bluesville; he sings “I Am a Stone” by Demon Hunter and then “7 Hours Ago” by Honeywater. His tastes are eclectic.)

Everyone has their radio station in the car that they prefer. Gabriel’s station is The Message, the Christian radio station. He is fairly docile with whatever you put on--he will cry and cover his ears for a lot of things, and is super sensitive to how loud it gets--but he genuinely enjoys listening to contemporary Christian music. Barring that, he also likes the 50’s station. When he is especially agitated out in the world, I can sing Billy Joel’s “Longest Time” and it calms him down almost like magic.

Emerald: I like Taylor Swift, Kidz Bop, and Imagine Dragons. I recently got a radio on my phone and I always listen to all my fave bands.




Books

Tula has recently gotten much more interested in reading. There are a handful of books we have to read several times a day--Animal Noises, I’m Sunny, the Colors Book, That’s Not My Train, Touchy-Feely Animal book. Almost all of them are the Usbourne books, now that I think on it. Outside of that, I read my bible study lesson aloud to her every day, as well as excerpts from whatever I am currently reading, and we listen to classics on audiobook.

Benjamin: The Pout-Pout Fish. {Okay, so when each of the kids were little, they had a book that they made me read just over and over and over again ad nauseum. Emerald’s was “Where the Wild Things Are”, Gabriel’s “Mr Brown Can Moo, Can You? And Benjamin’s was “The Pout Pout Fish” that Aunt Janice sent to him in the mail. We have read that book, and its sequel, so many times I don’t even need to look at the pages any more--I know it by heart.}

Gabriel isn’t much into reading, to be honest. He likes to flip through books, particularly those that have characters he is familiar with, Woody and Buzz or Bob and Larry. He still enjoys listening to me read aloud; when he is upset, sometimes he still crawls in my lap and I quietly read to him while he just relaxes into my arms. Whenever the option is presented, he enjoys listening to passages from the Bible with the notable caveat: he strongly prefers actual text to children’s story versions.

Emerald: Harry Potter, hands down. I also like graphic novels and any book by Rick Riordan. Also, sudoku.

Toys

Tula has a stuffed giraffe in neon colors that Aunt Melisa got her--she carries that thing, so named Gail by Emerald, everywhere. It is starting to get a tad ratty and I fear the day we lose it somewhere. Tula also plays a lot with baby dolls. She is partial to Cabbage Patch Kids, but Woody the Cowboy is often carted around as well. Recently, she has taken to playing with the Fisher Price barn.

Benjamin: the Farm. {When he was little, we had that FP barn everywhere he might go because he played with it so frequently. He hasn’t touched it in years, preferring to work in the art center or play outside or build with legos, but I think he is feeling possessive since Tula started eyeing it more.)

Gabriel loves his Buzz Lightyear--it’s got wings, it glows in the dark, and the helmet does that whoosh thing. It is, arguably, a cool toy. Beyond that, he likes bouncing his basketball and rolling dice. I think he likes the sound.

Emerald: I like Barbies. I am also really getting into art, if that counts.

All my kids are so unique and varied--each one of them has their own interests and personalities that are so particular to just them. It is a fascinating pleasure to watch them grow up and to get to know them better as they are figuring out what they like and what they don’t, who they are going to be.







Emerald, my bright and curious girl, who loves the color green and wants to grow up to be a chef, scientist, and president.














Gabriel, my deep, tender-hearted boy that we are still learning so much about, who helps me clean up and doesn’t notice he is getting too big for Mommy’s lap.




















Benjamin, my sweet, sensitive child that loves orange and red and wants to be a preacher so he can tell the whole world about God.

And Tula, a stubborn spitfire who is a Mama’s girl through and through, who has overcome a lot for such a new person but is becoming more complex every day.

I am so blessed to have been entrusted with these four wonderful people, and I can’t wait to see who they become.




--Andie

A Letter to Me

A Letter to Me

Dear 80 year old me:

By the time you read this, maybe you’ll be famous. I don't know. But no matter what, you'll probably be forgetful in your old age. So i want to bring back those memories.

There are a billion of things you could be right now, for all i know. But I want you to remember what you were.

When you were 11, you were:

A tutor.

A babysitter.



A sister



A student.




Imaginative.



Smart.



Systematic.

Goofy.



Independent.

Flawed.

Imperfect.

Okay with that.




With love, and always,
-Emerald ; D

Dad

When I was 3, my mom remarried.



My siblings and I were the product of her first marriage. It ended before I can remember and was upgraded by a willing father figure and an older brother, and we were all much happier for it.

I remember the first time I called Danny “Dad”. He was backing out of the driveway and I called “bye Dad!!”; he slammed on the breaks and ran up with the biggest, goofiest grin on his face and asked, “What did you call me?” I thought I was in trouble until the threw me up in the air and caught me and spun me around.

Dad is a mechanic. At our house in Argyle, he had a shop that was a safe haven of warmth and sunshine and rock n roll. Mom banned music in the house except Christian and country, but looked the other way when Dad introduced us to AC-DC, Collective Soul, Queen. He would work on cars while I read manuals he didn’t need out loud to him, halting and faltering over technical terms. If I didn’t feel like reading, I crawled on the cherry picker and rolled around on the creeper, getting in the way and handing him tools. I loved the smell of fresh lumber, so he’d take me with him to Home Depot to pick out scraps for my projects. With a tennis ball cut in half and glued to a piece of sandpaper, I would smooth my little chunks of wood, hammered nails in crookedly.



Through Dad, I learned a lot about practical knowledge—how to work with your hands, finish what you start, use your manners, and be a good person. Danny had firm expectations of how we ought to behave and enforced them strictly, from coming promptly when called to proper table etiquette to respectful attitudes to everyone you meet, but he allowed a great deal of space for us kids to be individuals. He wanted us to think for ourselves, come to our conclusions on matters. When I asked him about baptism, he gave me a factual definition of it, explained how different denominations viewed baptism, and told me, “you can’t make this decision for anyone else. Not for me, not for your mother, not for your grandparents. Only you can know when you are ready and what you believe.”

I knew that Dad was sick. He hurt a lot, every day, especially after eating. Some days were worse than others. Still, none of us—even him—knew how bad it was until he collapsed while working out in the garage.

The doctor at the emergency room gave him a diagnosis and prognosis.

Hepatitis C.

Dead man walking.

They had little hope for Dad to get better. There was no cure, and by the time Dad was diagnosed, he had been living with it for ten or fifteen years. It had already scarred and damaged his liver horrendously. Several other doctors agreed, but Dad found a doctor that was hopeful.

I don’t know a lot about that time except as it affected me. Dad was in and out of the hospital with increasing frequency. Sometimes he would be gone for months, come back for a weekend and have to be picked up by the ambulance again. Several times our school bus would pull up with EMTs and a rig with flashing lights sitting in our driveway. We learned how to tell based on the paramedics’ behavior how serious it was.



They moved Dad’s bed to the dining room so we could spend time with him during the day, and so he could be close to the pot belly stove in there. He was cold all the time. His hands shook so much he couldn’t write. I had to have him sign an absent note one day because Mom had already left for work; it was so illegible, just scribbles on the paper, that they wouldn’t accept it and I hid in the band room to cry.

Mom was the sole provider for the six of us, so she worked from 6 am until well after dark. She spent nights at the hospital, came home to change clothes and go back to work. Royce or Jarrod would drive us up in the afternoons after school to visit—we’d sneak food from the family waiting room, read medical pamphlets, play games on the elevators, and generally pretend we were anywhere else.

A couple of times, the doctor would call us at home and tell us to come and say goodbye because he was vomiting blood. His blood transfusions were measured in the gallons. The toxins backed up in his body so he couldn’t see as he stroked my hair and told me he loved me; he had multiple brain bleeds, and his skin and eyes were yellow with jaundice.

It was a dark and horrible time for our family. There was a complete and utter dearth of hope. None of us expected it to get better.



And then...it did.

Three in the morning September 11, Dad called to say he was getting a liver transplant.

I remember sitting up there all day, waiting. Mom had to watch this outdated video about liver transplants; I can’t imagine it offered any useful information. When he came out of it, he had a huge incision shaped like a wishbone, down his chest and splayed across his ribs. With a functioning liver, he was nearly half the size he was before—he looked so small and fragile and happy, standing up for the first time in a long time, with wires and tubes and monitors attached all over his body.

That was 15 years ago. Since then, he has had to take anti-rejection medicine that suppresses his immune system and allows his new liver to reside unimpeded in his abdomen. An experimental treatment brought his hep-C viral load to zero, but it was free to scar his new organ for ten years before it was stopped.

Dad was having trouble lately and went in for testing, which is how we got a new diagnosis for him: liver cancer. There were a lot of questions surrounding it, a lot of tests to be run because the tumor wasn’t acting like it was because his immune system is suppressed. He was supposed to undergo six months of chemo. If it was successful, he would qualify for another transplant.

The cancer could have been caused by his former illness or his anti-rejection medicine or some weird combination of both.

It felt like the transplant pushed the “pause” button, and someone pushed play again. Delayed pain—it didn’t go away, it was just put off. This hit us all in a very sensitive place of our hearts, a door we had quietly closed and tried hard to not look in.

My heart hurt for Dad though. He hates the hospital, says he’s been inside enough for one lifetime. I did as I had before—my best to keep him in good spirits, to keep him company like when he was working in the shop all those years ago.

We were hopeful—we had a plan, it was hard, but we did it before and we could do it again. His condition was causing him to retain fluid so he had to undergo a simple procedure to drain it. The wound got infected with MRSA, which became septic, and was rushed to Baylor hospital. As before, we gathered around him and tried to keep track as different specialists, those concerned with his liver, kidneys, cancer, transplant, or infection came through the door and each gave us part of the puzzle. We weren’t able to piece together all the information to make a clear picture, didn’t know how optimistic we should be, how much we should prepare ourselves.



After several days, he was released home on hospice with liver and kidney failure.

Last week, he got another infection and his condition deteriorated rapidly. Once more, family gathered to pray and hunker down in the storm. It became more and more clear that there wasn’t going to be another 3 am miracle phone call, no more pause button.

Dad passed away yesterday morning. He was fifty-five.



It is hard to explain how it feels. Part of me is...grateful. Thankful that we got another 15 years (and ten days) with him. That God answered his prayer from 2003 to keep him alive long enough to meet his grandchildren—all ten of them. That he isn’t in pain any more, because he was in a lot of pain all the time.

As grateful as I am for all of that, it still hurts. A thousand things a day make me think of him—fruity pebbles (which he would never share with us) and hole-in-the-wall Mexican food, low-budget science fiction, classic cars and classic rock, and 100-degree days. He knew what he liked and what he didn’t and was quite vocal about it. I haven’t much experience with death. I don’t know if I should avoid those memories so I can keep moving forward, or if I should immerse myself in them. Make a big bowl of Spanish rice so spicy it brings tears to my eyes, crank the thermostat up to 80, and watch reruns of M*A*S*H* and just cry for the man that chose to be my father.



Benjamin and Dad had a special bond, forged out of common interest (eating candy or spicy food, watching monster cars, and working outside) and a shared loneliness. Helping Ben through this has been the hardest part—his behavior problems and frequent outbursts. He doesn’t understand and he’s so sad and so angry. I feel like I’m leading him blind because I don’t know how I’m supposed to go, so I don’t know how to guide him through it.

So I tell him what my dad told me:

Dad was best in times of crisis, particularly after there had been a death in the family. He told me, “however you feel is okay. If you want to cry, that’s okay. If you want to laugh, that’s okay, too. There is no right way to mourn; you have to go through it the way that feels right to you. And Andra, I’m so sorry you have to go through it.”

--Andie