Julie Tullos

I have a neurologist. This is a goal I have finally managed to achieve. After many, many years without insurance we finally bit the bullet and I signed onto Tony’s insurance last September. I’m not getting any younger and things are starting to go a bit South so I thought now is as good a time as any.

I have gone to the dermatologist, the ENT doctor and had a mammogram done. Went to the cardiologist to check things out there (when I was younger I had a slight cardiac issue which seems to have disappeared as I aged). I had a more intensive mammogram to check my “dense breast tissue.” I had a spot removed from my face at the Derm. All good. And of course, the digestive issues with the Barrett’s Esophagus which currently seems to be under control. The depression is better managed with psychiatrist help. All in all I’m doing pretty good, all things considered.

But the neurologist I was anxious about. I wanted to go. With such a strong history of Alzheimer’s and dementia on my Mom’s side of the family I felt it would be important to start early. To start now. What can I do to prevent it? What do you look for? What kind of things do I need to be on the lookout for? How will I know? Can I sign up for trials? New medications? Lots of questions and only one place will know the answers.

So I went. As I sat down with the Nurse Practitioner and spelled out my history she was extremely sympathetic and efficient. She said that first we would do the initial tests that they do for anyone suspecting dementia. As I flew through that testing I remembered very clearly sitting there in a different office with my Mom. My Mom who could not draw a clock. Who could not name any words that started with the letter F. Except for Fuck. Which she said. My mom could not count backwards by seven’s. It was made abundantly clear to us that she was indeed suffering from some type of dementia at that time. Of course, that was why we went.

The doctor my Mom went to was particularly unhelpful – if you’ll possibly remember my earlier blogs they said “yes she has Alzheimer’s – see you in six months.” And that was it. They did put her on some medication or other which I cannot remember now what it was. It didn’t help. She was too far gone for that.

At any rate, as I sat there with the nurse practitioner going through these tests and she was telling me how excellent I was doing, I thought, yes but I’m only 49. That’s why I’m here. Why didn’t my Mom admit what was happening to her early enough to do something, anything, that might have made a difference? We will never know her logic behind that one except that it was second nature to her to keep secrets, to not admit that she needs help. To tell no one what was happening. To bear her cross alone.

The doctor came in to meet with me after that. She explained that we’ll do an EEG and an MRI and some blood work. I am grateful that they are taking me seriously. They ask if I want to do the genetic testing to find out if I’m predisposed to Alzheimer’s. I say absolutely not. I already suffer from severe depression that is finally somewhat controlled. I do NOT want to know that I someday will for sure, or mostly for sure, develop Alzheimer’s. It would ruin my life.

Knowing that there is a 20% hereditary chance is enough. I feel that there is probably more a chance of myself developing some type of dementia than there is not, due to every woman on my Mom’s side of the family having it to some degree. BUT. The women on my Dad’s side? Not at all. So maybe I inherited enough of my Dad to have missed that particular bullet. I will live in hope, but plan for the worst.

Someday we will sell our place and move East. East to East Texas where the pine trees grow tall and the red dirt sticks to your shoes. Where I feel most at home. We will build our dreamhouse and I will find another neurologist nearby who will help me navigate the un-navigatable. I will find someone who cares what happens to me and my family, who will keep us in the loop and not brush us off. It will be interesting to know what the MRI and EEG and blood work show. This is just a baseline I am told. We expect everything to be perfectly normal at this point.

I am not my Mom. I know that. But I plan on honoring her memory by doing everything I possibly can to avoid the disease that killed her at just 75. I am not going to go down without a fight. You can count on that.

This is the road I am traveling. I will travel it loudly and with every effort to avoid what happened to her. And I will share my life with you. We all need someone to show us the way. If dementia or Alzheimer’s is in your family, I will be your WAY. I will share every step I take with you. I will let you know what is happening with all the strength I have in me.

I am afraid. But I will do it anyway. I will live anyway. I will BE anyway. And I will share it all with you, that is my promise. Travel with me, friends, and let me know how I can help you.

With love and kisses and all the best intentions,

Julie

Yesterday was a day. A DAY. Luckily we came through it and live to tell the tale.

I left for the grocery store around 9:30 am. Tony went out to work with John, on building the playhouse/storage shed behind our house. Not an hour into it I get a text. “I fell off the ladder. Maybe bruised a rib.” What??!?! Shit! “Yep. I’m going to lay down.” I call him. Seems he was maybe three-four feet up on the ladder when the ladder and him lost balance and fell sideways onto the electric fence. He hit the ladder with his left side. I wasn’t there so I can’t tell you the cuss words/expletives that were uttered but I can imagine. Tells John to unplug the fence so they can pick up the ladder. Comes inside and texts me.

I’m rushing through the grocery store, because I know, I know it’s worse than he said. Ten years ago he slipped on the ice in front of the garage, landed on the same left side and broke four ribs. He was not long back from Haiti and we had an ice storm. I remember clearly. The original x-ray supposedly showed nothing broken but when we followed up with the doctor, they could clearly see four breaks. That took a long time to recover from.

Fast forward to yesterday. I’m checking out at the store and I see I’ve missed a call. I try to call him back, once, twice, THREE times with no answer. I try calling my kid, I try calling John. Nobody is answering. Finally he calls me back after I’ve gotten the groceries in the car and am on the way home at breakneck speed (yes I know it wasn’t life threatening, but I was very worried.) He tells me he tried to get up from the bed and something shifted and now he can’t get up at all. We decide we’d better get to an emergency room.

When I get home I find him kneeling on the floor in the bedroom, I’m like “how on earth did you get down there?” He says Baby Girl helped him but now he can’t get up. I ask if we need an ambulance. He says no. I direct Baby Girl to go start the car, open the door and lean the seat way back. She jumps into action. Y’all, she really steps up to the plate when it’s required. By the time I had gotten back home she had gotten all the blankets off the horses by herself, sans one. (The cranky one she’s slightly nervous of). I ran out to the paddock to take that blanket off and then we slowly inched our way to the car.

For some days now my air pressure sensor for the tires has been showing me that the front left tire has a hole in it. Tony plugged the hole the other day, but with the cold weather it was still losing air. I air up the tire before I leave for the store. BUT, as we are tooling down Frontier Parkway in Prosper the tire sensor starts going crazy. 26 psi, 22, 18, 15, etc. I’m freaking out – what the hell am I supposed to do?! We see the high school and the tire is completely flat by now. I pull in and am crawling along trying to get to an out of the way place while kids in trucks are whizzing past us not giving one iota that we have a flat. I pull to the right, onto some gravel.

Tony cannot help me. He can’t even get out of the car. I grab the Bronco book out of the glove compartment. I manage to get the spare tire out, the jack and the pipe thingie that you use to loosen the bolts.

Tony is out of the car. Barely standing and crying out like a little girl every time he moves. He tells me to go ask one of the kids in a white truck to help us. I go up to the truck and he rolls down the window. “Can you help me change a flat tire?” “I don’t know how” he says and brushes me off. I walk back to the car. He can’t help, I tell Tony. He’s clueless. So Tony, screaming, and myself, grunting, manage to get all the lug nuts loose and the flat tire off. The bell has rung and kids are streaming out of the school and the outside buildings, some are getting in their car and leaving. NOT ONE PERSON stops to help, or even to ask if we need help. Maybe because Tony is there, but surely they can see that he’s completely incapacitated?

Then, and this is the truth y’all, I swear. I am trying to get the spare tire on and the damn jack gives way and the car falls on my arm. Now don’t get any gruesome ideas in your head. After all, I’m obviously still typing. But I was leaning against the car hood and we were on gravel. The gravel made the jack slip out of place and since I was leaning with my right arm basically under the car hood, while trying to get the spare on, the wheel well area of the car fell, scraping my arm severely as it went down. Arm goes numb for a minute, then the pain is shooting up into my shoulder. Tony asks if I’m ok. I’m standing with my eyes closed and gripping my arm. Mmm-hmmm I say. I try to ignore it.

FINALLY an adult male sees us struggling and stops his truck. Can he be of assistance? Oh yes please! He takes a look at the puny little jack we have and goes off to get the auto mechanic students and a big power jack (I don’t know what it’s called?!) The auto mechanic student he brings back with him zips here and there and next thing I know the spare is on and everything back in place. I am so grateful I want to cry. (I don’t of course.)

We finally make it to the hospital. There is more to the story, but it’s not as interesting. To make a long story shorter, we finally got an x-ray which did not show any broken anything, nor any internal bleeding. Tony’s pain says they are lying on the nothing broken bit but we simply ask for the CD and go on our way (hours later of course).

It’s super fun trying to get him in and out of the car but we make it and I dope him up with some tramadol and a muscle relaxer. He’s sleeping in his recliner as he can’t get in and out of the bed.

I kid you not, all this really happened. Exactly how I expected and planned my day yesterday to go.

My arm is ok, just severely bruised.

When you died I had already cried so much. When you finally left me all alone I didn’t have any emotion left to give. I made all the right noises. I actually tried to squeeze out a few tears. But I couldn’t. I talked to the family, to the funeral home, to the care home staff. But I wasn’t really there. 

In my head I see a rowboat. I’m sitting in it with no oars, no paddle. When I look down there’s the deep, wide ocean under me. I’m not about to jump into that abyss. So I sit. Day after day. Quietly going about my business. Quietly still living. 

A bird comes. I see a dove. He sits on the bow of the boat and stares at me. I stare back. What are you doing here, I silently ask. Where did you come from? Where are you going?

The bird stays with me. Many days and many nights. I get used to him. I talk to him a lot. But I don’t cry. 

Then one day the bird flies away. Keening, I call “wait! Where are you going? I still need you! I’m not ready for you to go.”

I watch it fly into the distance and disappear. 

I look down. The rowboat I’m sitting in is now on a shallow lake. I can see the clear bottom. Surprised, I reach my hand down and touch the water. I pull my hand back, study it, & watch the drops from my fingers. But still, I don’t dive in. I’m not ready to swim. 

Then there’s a fish. Swimming alongside my boat, he looks up at me and his fins sparkle like rainbows on water. We drift. The fish hangs out for awhile. I sleep. 

When I awake the fish has gone but now my boat is in just a small pool of water. I am touching the bottom. I contemplate. I finally stand up. I step out of the boat. I wade thru the water to dry land. 

And I cry. 

It’s 6 am and I’m up. I’m the only one and it’s peaceful. I take a picture of the kid’s new bike in front of the tree and watch the lights twinkle.

She’s never been one to wake up early and pounce on my bed demanding me to “get up it’s Christmas!” Far from disappointing me, I enjoy the peace before the day begins. Our day will not be crazy or hectic, though. That was yesterday. Today’s agenda includes opening gifts, cleaning up wrapping paper, making gingerbread muffins and that’s it really. Oh, and taking a nap. But then, that’s most days for me! Only today my husband gets to relax, too, instead of being handed a honey-do list or the ever-lengthening list for the barn improvements and chores.

The kid always gets to relax (insert eye roll here). I’ve decided, now that she’s ten, that I should upgrade her nickname to the kid, instead of Baby Girl.

Yesterday was a time of quiet reflection for me. I spent the entire day cleaning, cooking and cajoling. Finally got the kid to complete most of her chores, and I got the beds re-made and the floor vacuumed. I wanted the house clean so that it would be nice for Sissy and her boyfriend when they came over and so that I could fully relax on Christmas Day. Who else needs their space clean and organized before they can relax?! But it was while I was cooking that the real reflection came. My Mom. My Dad. Weren’t here to help and laugh with me. Mom was always in the kitchen. Dad always getting up to no good with some project he insisted that “T” help him with. We thoroughly enjoyed each other’s company. The laughs were epic, the memories very powerful.

It’s the chopping of vegetables for me. I can’t do it and not think of my Mom. Feel her there, hear her voice. It’s evening and I can hear my Dad say “we need to feed the nags?” and asking when we’re going to eat. They’re both with me, all the time.

Christmas used to be different. I helped, not did. I bought gifts for family and my parents basically did the rest. Now I’m the parent. And I do it all. Tony was just as surprised as the kid when she opened her presents. His lone contribution was to put the new bike together and add the basket for Luna to the handlebars. He was also in charge of the cookies and milk left out for Santa. This is what I handled: gifts for EVERYONE (starting as early as August – I’m no slouch!), the cleaning, the wrapping, buying the tree, setting up the tree (Tony helped), decorating the tree, decorating the house, cleaning, creating the 2025 calendars for the kid and the MIL, ordering the gifts, going to stores to purchase gifts, the liquor store, more gifts, more wrapping, the menu for Christmas Eve (when Sissy and her crew comes over), the cooking, the baking, the grocery shopping, the post office, the Christmas Cards, the photos for said cards. What have I missed? I skipped decorating the barn this year, I skipped lights on the house. I mean, you can only do so much.

I’m not saying I’m a hero, all Moms do so much. It just felt like a lot, yesterday. And I was exhausted. I started “celebrating” early, at 3 pm – it felt like a good time to start. And who wants to cook dinner without a little drink? I was worried about my pork tenderloin. I asked Tony to grab BBQ from Clark’s on the way home. Momentary panic when we realized they weren’t open. Decided we would eat the pork and just go with it (it actually turned out just fine and very edible).

We still have horses to take care of. Today I need to clean stalls. Last night we had to turn out ponies (I made the kid and Daddy do this as I was cleaning up after dinner.) Oh, what about the Christmas dishes and setting the table? I did that. When Sissy made it to the house about 4 pm, she had little B with her, but the boyfriend didn’t come – he has a daughter, too, and she was sick. I felt the pressure lift. I don’t know why I felt so worried about the boyfriend coming, but I’ll put it down to my social insecurities. Love how Sissy steps in and helps cook when she is here, while PaPa T chases little B around, swooping him up and staring out the window at the horses. No outside, PaPa says, we aren’t going outside right now. Little B is miffed. That’s his favorite thing to do.

The kid is excited (somewhat) to get a Bark phone – no apps or data, text and call only at this stage. I told her she has to prove she can be responsible and take care of it and not abuse it or hurl abuse at me, before I will upgrade it. But then as Tony and I were trying to get it set up I accidentally blocked my own phone number and I can’t figure out how to unblock it. Annoying. Now I have to wait until tomorrow to call someone about it. So she can’t even use it yet.

At any rate, the season is almost over. I’ll have more time to write. More time to relax. It’s going to pour again tomorrow so I’ll have more time to nap (and clean more stalls). Last year I refused to do much for “the season” as I was intensely grieving my Mom and I was sad and depressed. This year I did too much. Was it worth it? Absolutely. Everyone is happy. Even me. Especially me. I got warm fuzzy boots that I love and Winnie the pooh socks. What could be better?!

Merry Christmas everyone! I sincerely hope you have a very relaxing day. I’ll be here, trying to focus on what I manage to have and hold onto, instead of what’s missing so much.

Much love to all.

Julie

I remembered that another girl at Baby Girl’s school had done homeschooling the year before, and that she was now back in public school. A child Baby Girl has grown up with and known since kindergarten, I decided to message the Mom.

Yes! She exclaimed, we loved it! If you only have one child I highly recommend it. I just couldn’t manage it with three. (I totally understand that!) She told me all about a place north of us in Collinsville that she said I needed to check out. A homeschool co-op. Now, I know next to nothing about homeschooling, other than I am responsible for Baby Girl’s education and all I can picture is her laying spread eagled on the floor refusing to do any work and crying, like what happened in COVID Kindergarten. I asked her what a co-op is and she told me the kids go there from nine to two Monday thru Wednesday. Well, that sounded ideal to me! Not having to be totally in charge, all by myself.

So I checked out their website. I read everything there was to read. I looked up homeschooling in Texas. Super easy – there are no rules in Texas. All I have to do is withdraw her from public school with my intent to homeschool and viola! Home school child. Well, this doesn’t sound too bad, I thought to myself. She’s still out of the house Monday thru Wednesday for a few hours, I’ll teach her myself on Thursdays and then we’ll have Fridays off. Which is perfect for going to horseshows! I will no longer have to worry about how many days of school she is missing. In Texas, in public school, you have to go to school 180 days, 170 of which you must be present. Baby Girl has already missed 7 days due to horseshows (and horseshow hangovers). It stresses me out.

This alone is not a reason to homeschool, I know. But it sure makes me happy. Plus, this particular homeschool is all about nature, and somatically learning – it’s aptly called The Wild School. They are very serious about the kids learning to love themselves and each other, love nature and work with it. They offer gardening, sewing, cooking and mindfulness activities in addition to the regular reading, riting and rithmatic.

There will be only four other girls in her “pod.” We skipped regular school on Tuesday and went to visit. At first I stayed with her, and Baby Girl was shy and withdrawn. I left at lunchtime and later she told me – “it’s a good thing you left!” She was much more open and engaged without me there. The place is just the director’s home, with a large open garage that serves the younger kids and a large building down the hill that serves the older ones. Lots of dirt and animals. Two cats, a Great Pyrenees and a pig called Olive. I need to teach these kids about horses, I thought to myself! They would love it. I wonder if they do field trips? Lots of sunshine and rain, mud and flowers and things to explore. They do journaling each morning. They do yoga occasionally. They consistently work together as a team. I’m impressed even while I’m slightly astounded and intimidated at my surroundings. It’s all so different.

Baby Girl was more cautious than me. She wasn’t sure. The next night her Daddy, herself and myself went to their end of school party and watched a documentary that the kids had made themselves, involving every kid (and animal) in the school. Daddy said – this is what she needs. The decision was made.

When it came time to tell her teachers at public school, one of them wasn’t there that day and that made Baby Girl really sad, so I promised I would email her. One of the teachers was completely shocked and the other one (the homeroom teacher) cried, and thru her tears said it makes sense for us (with the horseshows).

Two of Baby Girl’s friends came up to me and told me they objected to her leaving. And I said, well it makes sense for her. One of them said “yeah, with all her habits.” WTH does that mean? I was annoyed and even more sure we were making the right move.

I feel complete relief at the decision we have made. And as I am a teacher at heart, I’m looking forward to supplementing her education – as long as she will listen to me! Which she swears she will. We will learn about grief (long overdue), we will learn about the Bible, puberty, how to do a load of laundry, how to clip the horses, give them shots and de-worm them. We will learn about money and checking accounts and debit cards. There are so many, many options and I am open to all of them.

We will go to the theatre, the aquarium and the arboretum. The possibilities are endless! I have to admit I am excited, and really can’t wait to get started. Maybe this is what Baby Girl has needed all along and I was just slow to realize it. Maybe she and I will get closer and have more respect and admiration for each other thru this process, maybe there will be less fighting and loud voices and tears and hurt feelings.

Maybe there will be less “I don’t feel goods” and “My head hurts” and tears when I pick her up from school. Maybe this will be a life changer.

Fingers crossed and please send prayers and good vibes. Our hearts and minds are open and excited for this new adventure.

Hell no, I used to say, over and over again when Baby Girl would ask. No way I can do that, you couldn’t pay me enough, one of us would be crying every day and it would probably be me.

It all started back in second grade. Grandpa died the week after school started and I kindly explained to the teacher that Baby Girl might struggle a little as she and Grandpa were very, very close and this was going to be hard for her. Plus, she’s seven. And she was present when he died. Teacher made all the right noises, and then ignored Baby Girl’s grief. No grace at all, as far as I could tell. She started lashing out when frustrated, not keeping her hands to herself very well. She started getting in trouble a lot. She felt that she could not talk to the teacher because she would say “are you tattling, or telling?” Baby girl didn’t know the difference. She was just trying to stand up for herself and process her grief and sadness.

I got her counseling. She went every other week and the counselor was kind, but tough. Telling Baby Girl all the stuff she should be able to do by herself at the age of 7… then 8. We finally stopped going. The other day I was talking to her and said “the counselor never talked to you about Grandpa, did she? About how you felt?” Baby Girl said – no, she never asked. Now, seeing as how that was the main reason we went… you’d think…. but I guess the counselor wanted Baby Girl to bring it up first. Which she absolutely wasn’t going to do. And then Bruno broke his leg. So there was a lot of focus on that, and how her attitude (black cloud) affects other people and how to calm down in situations when she doesn’t feel in control. Which basically went out the window when she was in those actual situations.

At any rate, one day at school a little boy in the line up was picking on Baby Girl. I don’t know what he was saying but she loudly said “If you don’t shut up I’m going to KILL you!”

Did she have any real idea what she was saying? What that meant? Of course not. Did she get in major trouble for it? Yes. Sent to the principal’s office and made to do ISS the next day. I was livid. I wanted grace, I guess, and I didn’t get it. It didn’t occur to me then, but why wasn’t the school counselor involved? Why on earth did a seven year old seem threatening with a comment she made, in order to stand up for herself when she was being picked on? All that happened was that Baby Girl learned that school could be a scary place instead of a fun one.

I never had any problems getting her to go to school before that. That day she sat bawling in the car not wanting to get out to face her “punishment.” I couldn’t blame her. I didn’t know if I had any recourse, or anything I could do. So she went. Then started the “I don’t feel good’s” and the “I have a headache’s” every morning before school.

Now, despite some AMAZING teachers, in third and fourth grades, Baby Girl just wasn’t into school anymore. She slowly lost confidence – in school, in herself, in her ability to make and keep friends, in her academics. Not just from that one incident – I’m not saying that – just that that was the catalyst that started us on this path of “please can I be homeschooled!” Which concept, of course, she learned during kindergarten’s and first grade’s COVID.

Finally, fifth grade. The “I want to stay home’s” were worse than ever, even knowing her teachers all loved and appreciated her, and she them. She has three teachers this year, and they are all lovely people. However, there are a few students or “friends” that she clashes with and for some reason she really lets them get to her. She will also push back, when pushed. She’s not the type to just walk away. She’ll snap back when snarly things are said to her, or else she’ll cry. Depends on the day and the mood. Getting in trouble is at an all time high. Me picking her up in the car line and she’s crying or just upset because someone was mean to her. She gets in deep moods. She’s ten. I’m worried. I know this will all just get worse in middle school. She doesn’t seem to have the strategies to cope.

Then, the final straw. I won’t go into detail here to save her privacy but something big happens. Then happens again. It’s not good. As well, another kid called her a jerk in my presence (I had gone to have lunch with her) and I was basically called to the principal’s office because I stepped up and told him not to talk to my kid that way. Am I sorry? Absolutely not. This is the same kid who has called her gay and a furry. I’m tired of it. She did not absolutely nothing to antagonize him (at least on that occasion).

I sit in the car on the next to last day of school. We have already visited the homeschool co-op (more on that later). I am in the car line and I can see the kids at recess. I still don’t know why their recess is at the very end of the day. I see her swinging, by herself, and I think to myself “just keep swinging, Baby Girl, just keep swinging.” I didn’t want her interacting with any of the other kids. I didn’t want her to get in trouble again. I am tired. Something has to change. And it’s going to. We have made the decision.

Next blog post – all about the decision and the homeschool co-op.