A Profile on Tula

 Four-year-olds have the biggest personalities.

Maybe it is because they are starting to come into their own a bit--they are aware more, more confident in their surroundings and in who they are as a person. They are gaining some independence, doing things on their own. Whatever the cause, age four is such a fun time to witness. Tula is a prime example of this. 

Tula has so much personality, she can’t stop at just one. She has different personas that she adopts to suit her mood, depending on the situation. When Mom or Dad has told Tula “no” (a less rare occurrence than one might assume), Tula will flee the room and “Talking Baby” will return. Talking Baby is a very stern character who verbalizes very well Tula’s feelings on not getting her way. She will say “I am Talking Baby. Tula didn’t like it when you told her no. It made her angry.” 

It is difficult not to laugh when Talking Baby is lecturing you. 

Yesterday, we put out a bounty for Gabriel’s missing tablet, the reward being a soda with lunch. Tula found it, and after a quite triumphant round of high-fives insisted her name reflect her success. 

Me: Thank you for finding the tablet, Tula! 

Tula: You mean…Super Tula?

Her superhero persona is called Stripes, who has no discernible superpowers but speaks in a deeper voice. She told me that Stripes is a hunter that provides for her family by hunting wolves and cows. 

Where she gets this imagination is not hard to guess--we read at least four different books a day every day together. She picks one and I pick one before nap and bedtime. She will usually pick “one we already read” (her words) while I pick a new one. Her favorites are about dogs (like “Hallo-weiner” and “Dog Breath” by Dav Pilkey), the Elephant and Piggie books by Mo Willems, and Little Critter by Mercer Meyer, but she reads a big variety. Anytime you ask her if she wants to read a book, she grabs a whole stack and sets up camp, waiting to see how many you’ll be willing to read because she won’t get tired of it. There are some words she reads on her own, the shorter ones like “no” and “go”, and she recognizes all the letters, knows the letter sounds. She can spell her own name, and Mom and Dad, but cannot write yet.

It is a miracle that she actually even knows her name, because she rarely ever hears it. When I was pregnant with her, I expected we would call her Tula or TJ. As nicknames go, you don’t always have that much control--more often than not, she is called Toots, a moniker I am sure she does not want following her into grade school. But she is just as likely to be called Tu or Tutu or Tula Rue or T-Rex, Toodles, T-Bone, Teeter-Totter, or any other T word that occurs to me at the given moment. When she was a baby, she had the curliest little blonde hair so I called her Noodle, a nickname that stuck when she got taller but not any wider. This basis of confusion led to this conversation over Christmas.

Tula: My name is spelled T-U-L-A. 

Pawpaw: Yeah! What is your last name?

Tua, thinking: ….Oodles of Noodles! 

(As a note, none of my children have escaped the nickname thing, which is why I call Emerald “Strawbebby”, Benjamin “Banjo”, and Gabriel “Google Docs”.) 

Tula has a complicated relationship with food, but what four year old isn’t a picky eater? Her favorite meal, the one she asks for every single time we need to eat, is “chips and sandwich!” She will eat avocado every chance you give her, and likes sour cream but not ketchup. 

If you want to know all her favorite foods, take her to the zoo--she has named all the animals after her favorites, from Popcorn the albino Burmese python and Lunchable the Hognose something or other. Her very most favorite animal at the zoo though is the porcupine she renamed Burger. (The two she saw at the Little Rock Zoo she declared were Chicken and French Fries.)

When you give her food she really likes, you can tell because she has this happy little food dance she unconsciously does while eating. This is something she has inherited from her very favorite person, Aunt Amber, who Tula reminds me of for one reason or another nearly every day. 

Tula is so sweet and so funny. She’s so frustrating because she screams when she doesn’t get her way and it is the most piercing sound. She is a grade five clinger, and would be happiest if I just velcroed her to my body and walked around like that all day long. Her happiest places are swimming or in bubbly baths, jumping in puddles after it rains, and the fantasy destination of going to the beach someday. A water bottle goes with her everywhere she goes. She is a bright spot in the world, this joyous, disastrous, wondrous little girl. 

Four years ago today, we almost lost her. 

Today, diabetes doesn’t bother her. She has literally never known a time when she didn’t get finger pokes and shots. Her sister having to go through it too has made it a bit easier, too. There are some physical signs that she struggles with it. For example, her toes where she gets her blood glucose checked are a little scruffy, and she’s got some knots in her arms where she has had too many insulin injections. Even though she has gotten taller, she hasn’t really gained weight since she was about two so she’s just long and skinny. 

It is kind of interesting, I get asked a lot how I knew that Tula had diabetes. Frankly, we didn’t know until she was already in DKA. But I always tell them: the weight loss. You can get up in your head and start fretting about how much water they are drinking or how much they are urinating, but without significant weight loss I usually don’t jump to diabetes. (I never mind people asking; I like being able to help. The other two things I say are watch for signs of dehydration even if they’re drinking that much, and if you are still worried, glucometers are cheap over-the-counter at all major pharmacies; buy one and check.) But that is why we don’t worry too much about Tula not really gaining weight; it kinda goes with the condition. 

Tula can’t remember that time, thank goodness. But I have come to dread this time of year because those beautiful, awful pictures of her…it takes me back, makes me relive it. At the time, I was calmed and focused. You do what you gotta do to take care of the kid. After the shock had worn off, after the dust had settled, that’s when I started to fall apart. I had intense panic attacks and had to seek treatment for PTSD. Little things would set me off--a certain shade of purple, an accumulation of ice, the smell of Pantene shampoo. 

It was one of the worst days of my life.

Which feels hideous and self-centered of me to say. I mean, it wasn’t happening to me. It wasn’t about me--it never was. It was about this brave, beautiful, perfect little girl that loves to read books and dances when she eats guacamole and could sit by Burger the Porcupine’s enclosure all day. I am so very blessed and thankful to know Tula, little less to be her mom because she is amazing. 

That’s why I wanted to write today. I saw a video of Tula in my memories on Facebook, her eyes puffy from crying, her face so pale even with her chapped cheeks, idly scratching at the IV cast she had on her arm. We had gotten one of the two IVs removed, so she was a bit more mobile, and I could give her a bath. They had given me tubes of Eucerin to rub on her dry cheeks, and she was wearing a black Cooks Childrens t-shirt and a diaper. The video captured her first smile in days. Emerald had decorated her crib with streamers for New Year’s Eve. 

With that smile blossomed hope. That our she was going to be okay, which meant we might be, too. 

Happy New Years, everyone. May your day be filled with joy and laughter and all your very most favorite things. 

Love, 

The Weardens

Overdue Update

 I haven’t written in a while. 

Over the past year and however long, since we have retreated back into our cave waiting for something to change and it be a bit safer to venture back out, my words have left me. Even my head is a quieter place as I have grown increasingly desocialized, like a semi-feral housecat returned to the wild. Don’t get me wrong, it has been kind of nice. My brain feels less full and I talk less in general, because I genuinely have less to say. (Now when I am around my sister all bets are off.) But otherwise, having normal chats with people feels like a skill I have let atrophy and I fumble through it inexpertly. With fewer things to say, I tend to write less as an outlet. Thus, fewer blog posts.

It has been too long, however, and I assume people are wanting updates on how all of us are doing and what we have been up to. 

Michael left his job with Abilene Christian as an audiovisual tech last November when he accepted a job with Honeywell in cybersecurity. He took the job with the understanding that he would be working remotely during the pandemic and that we would need to relocate to Arizona by the following summer. This job was a great career move for Michael, but we were hesitant to uproot--while we had friends that would cushion the landing in Arizona that we were very much looking forward to being near, the practicalities of transferring all of the kids’ needs were daunting. We would have to find new specialists, therapists, and programs that could accommodate them. We would be leaving behind family, friends, and our church community. Since 2014, we had been working toward putting down roots here and ripping them out was proving tricky. 

In April, Michael and I flew out there for a long weekend to look at houses. The reality of the housing situation further told us now was not the right time to move. Houses were selling so quickly that there was little hope for us to get one, little less the “right” one for our family. At the airport, the guy at the car rental place asked us what brought us to Phoenix. We told him, and he said “good luck--I have been trying to buy a house for over a year”. As first time home buyers with no experience, barely enough credit, and not a substantial down payment, we were a longshot at best. 

Michael expressed these concerns to his superior, who urged him to put in for an exemption and continue to work remotely but stop looking to move until we heard back. A few weeks ago, we got notice that our exemption was granted--he could keep working from home and they would fly him out for important meetings and things. This was such a blessing, and we were quite relieved to have the pressure to move taken off. 

As for how Michael’s job is going, he just went through his mid-year review with his supervisor, who had a very positive and glowing report to give him. He loves his job and the people he works with, and we are happy for him. 

Emerald and Benjamin are still doing school remotely. I have sent in their application to do K-12, but there are so many people enrolling that the admission process has been slowed down significantly. Until then, I am continuing to homeschool them. This was a discussion we sat down and had as a family. Emerald wanted to keep doing school at home; Benjamin wanted to go back. We discussed how Emerald and Gabriel (and Michael and I) are all vaccinated, but Benjamin and Tula would not be until later. No one wanted to risk bringing Covid home to Tula, specifically. As we figure, she is most at risk being both diabetic and unvaccinated. 

Gabriel is going to school however. He is in his self-contained classroom and sees very little of the general population. His teacher is someone we trust to keep his classroom safe and healthy. He is most in need of the routine and supports. I have still been worried about it, but so far it has been good. Gabriel loves being back at school and gets nearly perfect reports every day. He is interested and engaged with the materials they have in his classroom, he attends to tasks long enough to surprise even staff that know him, and he more or less behaves himself. The other day, we got a note that said he sat and attended speech therapy for nearly the entire half hour, using his talker to tell the SLP what color the animal was unassisted. All of this reinforces that going back in person was the right choice for him. 

As for the other three and I, we still try and do fun things safely during the day when we can. We went to the state park yesterday. With the family zoo pass, we get to go there as often as we want. Tula likes to walk around naming all the animals. Her favorites are the big yellow snake she named “popcorn” and the porcupine she alternates between naming “fries” and “burger”. I will write a suggestion to the zoo that they get one more porcupine so that she doesn’t have to choose. Emerald and Benjamin work on learning the Spanish names of the animals and how to sign it, but mostly we wander around talking and enjoying being out. Abilene is very family friendly--we have tons of parks we can go to, frisbee golfing, the library, splash pads, or the Grace museum (which we also have a membership to). So we stay busy. 

As for extracurriculars, Ben is doing Cub Scouts; he is a Webalo. Mom takes him and tries to keep him as safe and social distanced as possible. He has gotten to go camping and tubing down the river and in general just enjoying the experience. Both he and Emerald are interested in joining 4H as well--Ben in gun safety and raising rabbits; Emerald in Legos/robotics and cooking. They got to hear about it at the expo, but we will hear more after the first meeting. 

Benjamin is reading “Treasure Island” right now as part of his school work. He likes to read it aloud to the cats, who seem appreciative. On Emerald’s reading list is “My Antonia” by Willa Cather, one of my favorite books. I actually rescued it from the dumpster when we lived over by ACU and all the college students; it became one of my favorite books. Tula...on a typical day, we read at least four books--two before nap and two before bed. She is partial to Little Critter books by Mercer Meyer, anything by Dav Pilkney, and of course, Pete the Cat. The rule is, she picks one book and then I pick one so that we don’t read the same thing over and over again exclusively. My favorite store in town is called “Book Therapy”; it is a used book store that Amber and I like to wander around. They have inexpensive picture books that I bring home to share with Tula. It has been nice.

As for me, I guess the biggest reason I have been so quiet is because I went back to school. 

Amber decided she was going to start taking online courses last year to get her bachelors in some IT field. She did some research and decided on Western Governors University, an online program based out of Utah. There were a lot of benefits, such as being able to test out of courses and work at your own pace to complete your degree as quickly as you wanted to. The price point was reasonable, a flat fee for a six-month semester with unlimited courses per semester. 

So I got curious and decided to check it out for myself.

I saw that they had a program for initial licensure for teachers, and I thought...I could do that. If nothing else, I am gaining knowledge and experience to better homeschool these kids, and getting some college credits in the meantime. I picked Bachelors of Arts, Special Education and Elementary Education dual licensure (BASPEE) because I figured if I was going to teach anything, special education has always been my field. There is a lot of need for it, and there are always jobs available. So why not try. 

The Pell Grant nearly covered everything, but I didn’t want to go into more student loan debt if I could avoid it, so I applied for every scholarship that was available to me. I was granted a teaching scholarship that not only covered the remainder of the balance, it was also enough to offset the out-of-pocket costs of things like certification tests (core skills, content exams, etc). It kind of reinforced the idea that going back to school was the right choice for me, because now I was getting to do it for free. 

I work pretty hard at it. As a general rule, I am a good student and make good grades. I enjoy learning. My semester started on May 1 of this year; so far I have completed 12 courses and am working on my 13, as well as passing my basic skills tests (I got a perfect score on my reading and nearly perfect on my writing). 

Maybe the teaching thing won’t work out. There are a lot of considerations, I know. Burnout among teachers is high, and there is great cause for it. Maybe I won’t even be any good. I am in the process of becoming a substitute teacher for AISD, though. It should give me a better idea of what it would be like to be in a classroom, and how I might manage. But I am glad I am trying. My next step I think would be to get my master’s to be a visual impairment specialist, because that would be something I would encounter frequently as a special education professional. One step at a time, though. At the rate that I am going, I should be ready to do student teaching in about a year. I’ll let you know how it is going. 

Outside of that, everyone is healthy. We have had remarkably few unscheduled doctor’s visits over the past year (the scheduled ones are still as frequent as ever). Gabriel is on a medicine dose that seems to be more or less working for him, and he is making communicative progress with his LAMP for Life device. The last time we got the girls’ A1C’s done at the beginning of August, they had showed marked improvement--8.3 (Emerald) and 8.4 (Tula). Just a little more push and we will be in that 7 range that we have been working so hard for. Sometimes it seems like Tula is mellowing out and getting less sensitive to blood sugar changes; other days, it feels as unpredictable and volatile as ever. 

But that is basically the all of it. I could tell you about the cats, but they are pretty much the same as they have ever been. I could tell you about the dog, but she is an old woman and is also the same as she’s ever been. Everyone is still muddling through to the next day the best we can. 

We hope all of you are doing well--we love and miss you all. Feel free to reach out to us any time. I may not be so good at the talking anymore, but I would love to listen to what has been going on with you. 

--Andie