Julie Tullos

I remember now. It was about the blood thinners Dad was on. We had to be sure he was off the blood thinners before the scheduled surgery for the Wednesday after I returned. Who could take him off of them? Certainly not the rehab – they needed a doctor to put in an order. We spin around and around for a full day before my brother gets the answer we need. No more blood thinners as of Tuesday, a week before the surgery. At ease, I order another drink from the bar and go back to baking.

I return on a Thursday and Dad is doing ok – he’s alone a lot but he seems to be coping. He’s going down to the dining room for meals (assisted of course), and he’s eating well. He’s watching HGTV non-stop until all my enthusiasm for the channel has been thoroughly squashed. Not only is it on every single time I am there, but whenever I call him you can hear it perfectly in the background, as it’s so loud. Turn that shit down, Dad, I tell him. He likes the one with the two redheads – Mom and daughter. The mom is bat-shit crazy he tells me. And the daughter ain’t bad to look at but she’s pregnant in every other episode. 

On Monday he’s released from rehab and Baby Girl and I go to pick him up. We stop at McDonalds and get fries, which he eats in between coughing spells. The coughing is terrible – a dense, dry attempt to get something up. It’s a good thing I have a towel in the car as eventually he has to spit everything out. I am wondering what’s up as I haven’t heard this strange coughing before. He hacks and chokes all the way home. Aunt Patty is due to arrive again later that day and I happily let her take over as I am one hundred percent exhausted.

On Tuesday Aunt Patty takes Dad to his pre-op appointment which apparently goes fine, and I am told that Dad has to be there next morning at 6 am. EGADS. This means a 4:30 am wake up call for me, which honestly isn’t that bad – horse show mornings call to me. I love the sky at that time of morning, and the stillness and the chill (well not in August). Like nothing at all has happened yet and anything is still possible.

A couple hours after dropping them off I hear that the surgery goes well and I return to take them back to the house. Dad is tired of course, but functioning. We are optimistic. The biopsy results should be back by Monday. Aunt Patty can’t get Dad to eat that day, though, and every time he takes a drink he chokes and coughs. We think maybe just soreness from the surgery, maybe swelling? We don’t know yet that the tumor has basically shut off his esophagus. The epiglottis is not able to function properly so anything that goes in, goes into his lungs.  These are details that we are unaware of as yet. 

By Thursday Aunt Patty is really concerned about the congestion. We get a call in to his doctor and procure some antibiotics. But when the home health nurse comes later in the afternoon she tells us his oxygen levels are way too low. She says we have to take him to the ER. He is extremely congested and not getting enough oxygen. Aunt Patty takes him as I stand by at home. 

This is when they stay in the ER for nine hours before they get a room. This is when we find out a whole lot of things we didn’t know. Like he has bacterial pneumonia from aspirating his own saliva. Like his throat is basically blocked. Like he’s not getting enough oxygen because he can’t breathe properly. Like things are way worse than we thought. 

That was a week ago. So much has happened while Dad has been in the hospital, but on the other hand nothing has happened at all. We learned on Friday – thanks to the hospitalist doctor that called the ENT – that Dad’s cancer is called squamous cell carcinoma. We all rushed to google it. It’s just a type of throat cancer that is currently located in the tonsil. Nobody has ever said that there is more than one tumor, or spot, even though I am SURE I saw more than one on the PET scan. It has been called tonsillar cancer, throat cancer, glandular cancer. I was told that the glands are continuously excreting cancer cells. That it may not have spread to the lungs but then again it may have. The nodes are too small to do a biopsy on. Thursday through Saturday was spent trying to beat the pneumonia with antibiotics, watching HGTV and wondering about nutrition as he is not allowed to have anything by mouth. 

Sunday I am with him for an hour – I try shaving him with an battery operated razor I have just purchased at Walmart. I don’t know what it is meant to shave but it certainly isn’t hair. We bemoan the lack of functionality in today’s electronics. Cheap shit from China we agree. I say I’ll take the damn thing back. Dad suddenly looks at me and says “Do you know what’s wrong with me?” I say “well you have pneumonia, Dad.” He responds with “well that beats the hell out of cancer.” I swallow hard and say “you have that, too.” Dad just looks at me and then looks away, eyes closed. We don’t say anything more about it. I saw the pain in his eyes, though. 

Sunday until Wednesday was spent watching HGTV and waiting for the PEG line to be placed. As each day came and went Dad got weaker and weaker. Clinimix was given (lipids and fats) through an IV but no protein. By Tuesday when Dad was thrashing around and hallucinating he didn’t even look at his phone. He didn’t want to talk to me, as if he just couldn’t make sense that it was me that was calling him. Aunt Patty tried but he showed no interest. I didn’t go to visit him those two days as I knew Aunt Patty was leaving on Wednesday and I’d be with him all day. So I try to get things done at home while she’s still there. Aunt Patty texted me Tuesday night and told me there were days in Hell better than today. I’ve never heard or seen Aunt Patty in tears but I imagine she might have been.

We had no idea what was coming.

I started writing this on Wednesday before Dad died. I didn’t know what would happen. I wasn’t sure I could finish it. I have not changed what I originally wrote – I stopped writing on Friday August 20th. I picked it back up today. There are three parts to this story.

WEDNESDAY AUGUST 18, 2021

I stand by the side of Dad’s hospital bed as he tries to open his eyes. He doesn’t see me. His breathing is at best raspy and at worst like he’s drowning. The sound of him gurgling will be my constant companion tonight. So far today he’s had his lungs deep suctioned at least once, been on oxygen multiple times, and has been in the OR for a PEG tube so he can get some nutrition, at last. He hasn’t had any food in seven days. He can’t swallow on his own. He can barely talk. His mouth is so dry his tongue must feel huge in his mouth. He’s been sleeping most of the day, seemingly painlessly, thank goodness. Yesterday he thrashed and tried to leave the bed and couldn’t make sense of anything and hallucinated like he was on LSD.

Dad does not have COVID. He doesn’t even have COVID related pneumonia. Dad has cancer. The tumor that has invaded his throat, which started in his left tonsil, has grown so that he can no longer swallow. It is pressing on his carotid artery, which we assume is causing his confusion. It was found in lymph nodes on both sides of his neck. The pneumonia that put him in the hospital was caused by him aspirating on something because he was having trouble swallowing. But we didn’t know. He didn’t know.

We were pretty sure a throat cancer diagnosis was coming. A couple of months ago Dad fell in his home and was sent to the ER by the EMT’s. There they found nodules on his lungs during a typical chest X-ray. He was referred to a pulmonologist who ordered a PET scan (positron emission tomography). A PET scan is often used to detect cancerous cells in the body. The lung doctor let us know that the nodules in his lungs seemed harmless (for now) but that he detected “something” in his throat which needed to be checked by an ENT. So we made that appointment and waited anxiously for the day. Emotions ran high with all of us, one minute we were thinking lung cancer is definite since his own Dad died from it, and the next we’re dumped into throat cancer territory. All unknowns to us, as none of us have ever really experienced knowing anyone with cancer. 

A week before the appointment Dad falls backwards and hits his head on the fireplace. He 

refuses to go to the ER although the wound is deep and bloody. Somehow he lost his balance with his caregiver standing right there next to him – and she was unable to stop him from falling. He seems ok, though, so we all take a deep breath and just move on. We are all super concerned at this point about his confusion and his lack of balance. We discuss endlessly and come up with no answers. We talk about cirrhosis, we talk about dementia, we talk about urinary tract infection. Home health runs tests and rules out a UTI but it takes a full week and we are all irritated with the delay. 

The morning of the appointment arrives and Aunt Patty and I load Dad up into the car. Dad is worried, of course, though he won’t talk about it. At least not with me. Dad and I have zero ability to talk to one another about things we are deeply concerned about. I believe it’s just us trying to protect the other one. We just don’t talk about the bad stuff. I want to talk to him about it, but I’m met with a shake of the head and a “let’s not talk about it until we know what it is.” And since I’m also afraid of the answers I easily let it go. 

Apprehensively, we wait in the doctor’s office. Before he comes in an assistant pulls the PET scan up on the screen. I go over to look at it. I see bright blue spots, multiple spots, all over his throat. The biggest one right where the tonsil is. I know immediately what it means but I keep my mouth shut. When the doctor comes in he does not acknowledge the cancer. He feels Dad’s neck, he looks in his throat, he says “yes, we need to do surgery to take this tonsil out.” He doesn’t use the word cancer. He says we can do the surgery Wednesday. None of us ask the question. We leave feeling drained and discouraged. 

And then we are told he needs multiple “clearances” before a surgery can take place. As we pace the floor and start making phone calls and appointments and with a heavy blackness over all of it, Dad has a seizure. He’s been sitting outside on the porch – something he hasn’t done in a while due to feeling so poorly – and his caregiver is helping him come inside. He sits down on his walker seat and she is maneuvering him into the house when he goes stiff and his eyes roll up and he starts to shake a bit. She calls his name and gets no response. She says his name again, and he responds “yes” but without making eye contact. She’s about to press his Life Alert button when he finally looks at her and stops shaking. 

Home Health is called. They say we need to take him to the ER. It could be a brain bleed from the fall against the fireplace last week. I cancel my evening plans, load Dad up and we head out. At the hospital they check out everything. Ironically they do another chest x-ray. Dad is very dehydrated. They admit hjm, but after a few days of everything under the sun they cannot find a reason for the seizure other than dehydration and low vitamin B12 levels.  At this point surgery on his throat has been delayed a week. Now we spend every moment on the phone trying to get the cardiologist to agree to give consent for the surgery based on the records from the hospital. It’s not like we can take him to the appointment. Finally after hell and high water we get it. The cardiologist signs off. Now another hurdle – Dad is going to rehab. Surgery cannot happen while Dad is in rehab. He has to be discharged first. Baby Girl and I are supposed to go on vacation and my aunt, my Dad’s older sister, won’t be available either. We get my brother to come down for the time we are gone but regardless I am still dealing with things over the phone – I can’t even remember what all it was at this point. Stressed and tired, I try to enjoy the beach with Baby Girl. We hang out mostly at the pool after sand invades her swimsuit and she cannot handle the saltwater in her face. I buy drinks from the swim up bar and let the sun bake me. 

God is in control, right? He has to be because I surely am not.

More to come…

I had a dream the other night that my Mom had died. And when I went to the hospital to see her I learned that she really hadn’t died at all. That they had taken her off of a medication she was on and the result was that she was completely back to normal. Her old self. Before Alzheimer’s. I was astounded, and so very happy. It wasn’t a sad dream at all. I was able to be with her and talk to her again and have her talk back. I don’t remember if we actually said much at all during the dream, but what I do remember is just such a feeling of peace and calmness.

I thought about the dream all the next day. I carried it with me. I told my best friend Pooh about it. I wondered what it meant. I thought that maybe it was referring to the deep seated fear I have that my Mom is really ok inside her head, and she just can’t tell us. That she’s trapped, so to speak, like those people we hear of in vegetative states whose brains are actually ok but they are paralyzed and not able to communicate. I realize there is virtually no chance that this is the case with my Mom but still the thought of it haunts me. The fact that she has lost control of bodily functions, eats with her hands and has forgotten how to clean her teeth with her tongue while she’s eating means that her brain really isn’t working at all. But still I worry. Because I know that if this were the case she would be truly, truly miserable.

The last few weeks have been tough – Mom has cried and been teary on several visits. Including one time when I FaceTime’d her and she cried because she couldn’t touch me – she was able to communicate that enough that we figured out what was wrong. Her whole face lights up when she sees me, and she immediately reaches for me, so I know that FaceTime really isn’t a good second option if I can’t get there. In fact, that day I was so unnerved by her tears that I dropped what I was doing in order to drive out to see her. Even though I had already told myself I didn’t have time, that I was too tired as well.

And the time before that she cried as well. Teared up a LOT the entire time I was there. I think always that her tears are not just tears because she missed me, but also because she so desperately wants to tell me something and can’t. A few days later her nurse, Roxie, put her on a new pain medication and that seems to have made a difference. Maybe she was in pain. Maybe when she saw me she thought “here’s Julie – she’ll be able to know what I want.” And then frustration because I didn’t.

There’s no shortage of pain and guilt and sadness and rage within me. But as I sat with her one day a week or so ago something new crept in. A sliver of acceptance. It snuck in across the floor and slithered its way up to where I sat, her hand in mine, and touched my heart. She was dozing and I was quiet, sitting there watching, and I felt it. And I was glad. Acceptance means I can see her now in a new light. I can appreciate the beauty that is still there, the way love still radiates from her eyes. I can be more still when I’m with her, not always trying so hard to DO something, but just to sit, and be quiet and hold her hand.

Mom doesn’t care if I fill the birdfeeder up with birdseed. She doesn’t care if I walk her around the building or down the street – although she does enjoy it very much. She doesn’t mind if I don’t bring a new book to read. I don’t have to find a new way to reach her. Her hand in mine, the joy in our hearts is enough.

Pooh said maybe the dream meant a release from pain and a newfound peace. She was referring to when Mom actually does pass away. But maybe, just maybe, we’re already there.

A few months back my very first riding instructor passed away. Her name was Tuke. She was as old as the very first rocks of the planet – at least to my 9 year old mind. Her husband was a general in the Army and he passed away just about a year or two ago. They were both well into their ninties. I’ve wanted to pay homage to Tuke ever since I heard of her passing. And the best way I know to do it is this….

When I was nine I looked into the deep, soulful eyes of a little black pony named Smokey Joe. And I felt a connection immediately. There was just something about that little guy that spoke to me and I wanted to ride him. I wanted to know him. To say I was disappointed that I did not get to ride Smokey Joe at my first lesson would be a major understatement. But eventually ride him I did, and it didn’t take long for my ambition to catch up with my skill.

I learned early on that cut off pieces of hose make excellent riding whips when pulled from the back pocket of a pair of jeans that have been around for 50 years. I learned that rubber riding boots worked fine if you didn’t know that they weren’t the best type of boot to learn to ride in. I learned that when a pony lays down in a pond and rolls over it’s a lot easier to tip water out of a rubber boot than a leather one. I learned to laugh. And that laughter brought admiration from Tuke whereas crying brought disappointment.

I learned that if I wanted to ride I had to be able to not only put a halter on, but to catch the pony. And if I wanted to catch it I had to find it. Most days we all set out together after Tuke had pointed us in the right direction to “track” our mounts. When we found them we quickly learned that treats were necessary, and being both short and not very flexible I figured out that tree trunks and high ground were very helpful in mounting. If we fell off and landed in ant piles we all laughed until we cried while the pony took off home. Whoever was the victim dusted herself off and trudged back to the barn. Nobody got offended and no parents cared.

I learned that as long as the toilet flushes most of the time it doesn’t matter how dirty the bathroom is when you are in the middle of nowhere with only a falling down old house and a tin barn to provide relief when you have to go. I learned how to bridle and saddle and how to groom and how to not be horrified by picking off ticks and squashing them under my boot. I never did get so far as to squash them between my fingers like Tuke did. Bugs are a way of life in central Texas and between the cactus and the fire ant hills you will only find a lot of rocks. So if you fall off it will hurt. A lot. I learned about an old Indian burial ground which is something I am sure that Tuke made up to entertain us, or scare us. I’m not sure which.

I learned respect when I watched a fellow student get thrown up against the old tin barn wall for being disrespectful. I learned compassion when an old horse died and I learned about the practicality of burying a horse when I saw the huge hole in the ground with smoke coming off it. I learned that snakes won’t bother you when you are swimming in a pond if you are on the back of the horse and that swimming on horseback is something everyone should experience at least once if not as often as possible.

I didn’t want to get kicked, or hurt, and so I learned to read the unspoken communication of a horse. I learned that if you lean back when a horse bucks not only can you stay on but you can stop it as well. I learned not to be afraid. That I was capable. I was nine and 50 pounds but I learned this. I was 10 and 11 and I learned it more. I learned that good friends are always found at the barn and very rarely anywhere else. I learned that no matter how many times you said “Tuke!” as loudly as a little kid can, that unless she really wants to acknowledge you – she won’t. And she definitely won’t if she’s busy with something else. So that was patience. Patience also came in the form of jumping higher fences. That if you fall off over a crossrail situated between two bushes in a sand pit and made out of two long tree branches that you had better wait to attempt anything bigger until you have mastered the crossrail. And that was perseverance.

I learned empathy when I went to my first horseshow and got a first place and a reserve champion and my good friend didn’t win any ribbons at all. I learned not to gloat but to enjoy success silently and with care. I learned life isn’t always fair and while I may have earned those ribbons that sometimes it was just a crap shoot and you had to go with the flow whatever you were handed.

And I learned that legends can, and do, die. Thirty five years after they have taught you everything you need to know about horsemanship. I learned you can grieve for someone you haven’t seen in twenty years or more. That love comes in many forms and that TUBO stood for Tuke and Bob – something that occurred to me long after I had left there.

You don’t choose horses. Horses choose you. And if you are lucky enough, you have a first instructor that shows you that. I did. I will never have more respect for someone than I did for her. Thank you, Tuke. Thank you.

I am not sure what happened tonight. How it got as far as it did. But I knew I could not give in, no matter how red her eyes and face got from crying, no matter the endless stream of tears streaking down her cheeks. No matter that I was dying inside, simultaneously angry and heartbroken, that it had come to this. This travesty, this trauma, this drama that neither of us asked for or needed.

First grade homework. First grade MATH homework to be precise. All she has to do is one page of subtraction. It’s called Rocket Math and the premise of it is to actually time her and see how many she can do in one minute. There are 92 problems on the page. Ninety two. How many six year olds have the patience to do 92 problems at one time? Even trying to break it down, do some 50 problems one day and 42 the next – even THAT is a struggle. And that’s for a kid who actually CAN do math. But see, the thing is, she doesn’t want to.

She wants to go play after school – let her imagination and her feet run wild. Or she wants to chill and play on her ipad for a bit. She wants a snack. She wants to come out to the barn with me and play with her friends that come while I teach lessons. Or play with Daphne, the cat. She wants to have dinner and take a bath and read stories with me. SHE DOES NOT WANT TO DO MATH HOMEWORK. And the feeling is quite mutual.

Baby girl is very, very smart. She doesn’t struggle to understand concepts, or to see the wisdom of tricks and shortcuts. She can easily subtract using a numberline, or the old fashioned way of lining up the numbers one under the other. She can use her fingers. None of these methods are acceptable. Baby Girl wants to do it in her head and she wants to do it quickly. So she does them wrong. So she can be finished and get on with her important activities. Somebody has to sit there with her and either write down the answers while she does the work, or find all the ones that are similar so we don’t have to go through hell more than once. She will find every excuse in the book to put off doing her math homework. Write a letter to her teacher? Sure, let’s practice writing neatly. Do some spelling words? Sight words? Read a book? Absolutely.

Do math? No, no, no, no, and still no again. It isn’t fun. Not for her, not for me, not for Daddy, not for Sissy, not for her patient friend Rina who is in third grade and well past subtraction. Sissy takes off home when math is mentioned. Daddy goes to work. Rina hears her mom calling her. Which leaves…. Me. Mommy. The Demon. Because that is what I turn into. I simply cannot understand WHY she won’t just DO THE WORK. At first I encourage. Then I start saying things like “we could be done by now, if you would just buckle down.” I say “Baby Girl, you are so smart, you can totally do this stuff.” Then she starts whining. And whining. And whining…. until I can’t hold it together and I completely lose my shit. I yell. She cries. I feel awful. She cries some more and says she’s sorry. Which quadruples my guilt over yelling at her. Sorry, sorry she says with rivulets of tears and snot. I put my head in my hands. I pick up my phone. “Don’t text Daddy!!!!” she cries frantically. I come back sharply with “Let’s get this done then!” I say she’s stubborn. She gets even more upset. I say please can we just do this and she howls that she doesn’t know the answers.

On and on it goes until we are both a puddle of feelings and exhaustion.

She can spell “starvation” and “plastic.” She can read chapter books. She can write and imagine wonderful stories. She can play pretend school and she can ride a pony and do all sorts of beautiful, amazing things. She can look at me with her heart in her eyes, in both happiness and sadness. I worry that this will traumatize her. That it will only get worse as the grades go up and the homework gets harder. That she will completely rebel against doing any homework at all. It’s only first grade and we are a wreck over math homework. I worry that she sees me lose my shit with her and thinks it’s her fault, when I know damn well it isn’t. I think that it probably scares her to see me lose control and I beat myself up over that. All because of math homework.

So, friends, tonight please say a prayer that the end of school will come quickly. That summer break will soon be upon us. That moms and dads everywhere survive these last few weeks. And that the shit-losing is minimal and that the kids are not traumatized permanently. And have a drink in honor of all of us that are still doing first grade math homework at 45 years old and at 9 pm when little children should have been asleep an hour ago. We are not ok. This is not ok. I’m going to take a deep breath and leave you with this…..

Homework sucks and children need sleep.

You get out of life what you put into it. That’s what I said to my 19 year old step daughter today. I hope she remembers it. As I said it I looked around at the barn we were visiting and I noted a lot of differences between that barn and my own.

It’s time for the Elder Daughter to go her own way, make her own life, and her Dad and I want to help propel her on a path to (hopefully) a successful life. Which means I can no longer do everything for her. When we come home from a show she will be the one to clean her muddy spurs, wash her saddle pad and breeches and send her jacket to the drycleaners. It won’t be me. Perhaps she will forget something important the first few times. And I’ll gently remind her. But when we come home from her lesson at her new trainer’s barn, she will be the one to clean out the back of the trailer and put her things away. Pretty soon she’ll be the one driving herself to her lessons and backing the trailer up and unhooking it. I’ve plenty of my own things to do, not least of which is raising her 6 year old sister.

Today was ED’s first lesson with a new trainer. The first time she has taken instruction from someone other than me since she began riding at the age of 9. And I am delighted. I am excited for her, and thrilled that I can finally just let her figure shit out and be the mom cheering for her at the shows. Just like I have given over the training reins on Baby Girl to the lovely next door neighbor trainer, I should have done it long ago for ED. I was selfish. I was immature. And I wanted something that would never truly be mine.

As I looked around the barn we were at today I noticed how clean it was. How the aisles were perfectly swept and the stalls perfectly clean. With hay bags hung for each horse and matching sheets and tack trunks. A few years ago I would have been very envious of all the matchy-matchy and perfection. A few years ago I would have wanted all these same things and more. Tack room stall curtains for the bigger shows and beautiful fake plants and laying down mulch and a large wooden, custom made “Abingdon Park” sign like so many of the other barns have. I do actually have curtains. But they are old, and there is only one of them along with a name banner. It’s all I could afford at the time. And it’s been perfectly adequate for all these years. When there is “extra” money hanging around it sure as shit isn’t going to get spent on stall curtains.

But along the broken road I have learned who I really am. I am a trainer 100% dedicated to the middle class, middle income family who, if it weren’t for my guidance and patience, would never be able to afford this sport we love. This is my passion. I don’t want Mercedes or Teslas by the dozen coming up my driveway, driven by moms parents in skirts and cute tops with perfect nails that can’t be broken. I want the ones that are willing to get dirty. The ones that will help their kids tack up. The parents that will hang the curtains at the show and hook up the trailer. The ones that will have a glass of wine with me at the end of a long day. I want the parents I can be friends with. I want the kids that want to learn how to clean a stall, how to body clip, how to de-worm and why. I want the kids who will always, always clean their tack to “is this Julie clean?” specifications. I want the ones that will earn their way to a middle-of-the-road saddle and love it simply because it’s finally theirs. The ones who can learn to read a course by themselves and execute it without waiting for me to teach it to them. I will teach you to take care of yourself and your horse and then I expect you to actually do it. I want the kids who WANT TO.

I love my barn. I love the slightly chaotic look, and while mostly clean, always has something that needs to be done. I love how all my students want to be here. They want to help. They want to feed and clean stalls and groom ponies and scrub water troughs. I love that my ponies mostly stay out, with their somewhat shaggy appearance if I don’t have time to body clip them. I love that they are not picture perfect at all times and that they know I am their person. I love patting and talking to them while I feed and gently swatting the ones that put their ears back and pretend to be offended when I put their blankets on.

And even as I hate the freezing cold weather I am happy to be the one taking care of my horses when it snows, or ices, or rains. I am also happy that I can call any one of my parents and ask them to come feed at a moment’s notice when I have to take a horse to the vet clinic and that they will absolutely come. I love my property, too. I may not have that coveted indoor arena, or even a covered one, but what I have was built by my husband, by my dad, and by parents. Out of love. I love my arena. It’s the perfect size and maybe the jumps are old and worn but once again, they were built by my husband, and my dad, and painted by me.

I have walked that broken road. I have been in many places, and in many barns. I have done it all alone, and I have been lucky to find my husband to share it all with. I have been to many shows, and have had hundreds of students. I am ridiculously proud that at least FOUR of my former students are currently teaching and training in the North Texas area. In my mind that’s a pretty big number. I am proud of them – even the ones I haven’t kept in touch with.

This road has definitely been rocky – too many times to count I have wondered if it was all worth it, if I should give up, if I should quit. And the thing that always comes back to me is – I do this for the kids. The middle class, middle income kids that are everything I was, and more. Maybe I’m living vicariously through them, but I’m willing to admit that I love my kids. I love my parents. I love my barn. Along the way I have learned what really matters, I have learned that love is everything. Love the horses, the ponies, the sport, and the kids. That’s what fulfilment is. Not all the fancy stuff. If you love, you win.

I hang up the phone with a medical billing department and I go to stand in front of the fire. I stare into it for a few minutes until my husband asks what is wrong. I am overwhelmed I respond. A few moments pass and the darkness descends once more. Why is it, I ask, that it’s times like these that I start to think about my Mom, and miss her so hard? I don’t know Babe he says.

But I do. What do you do when you are overwhelmed? When you need to talk to someone? When you need advice or a listening ear? You turn to your mom. You call her up and it’s like a warm hug coming across the wires – or airwaves now I suppose. Her very voice is a calming balm. The way you instantly know she’ll do whatever she can to help. The way she says I love you. Nobody ever loves you like your mom loves you. Nobody can listen in just the same way. Nobody knows you better than you know yourself, except her. You know what you need? She asks. A long, hot bath and some time to yourself. Everything will be alright – you will get through this, you always do.

Her presence in the house my Dad lives in is strong. Her bedroom is unchanged for the most part. Her closet has clothes and shoes lined up. Boxes of pictures, wrapping paper and the old Wade Family Bible are there as they should be. A candle from my Granny’s funeral. An old doll and her leftover aura are there. Her bathroom drawers hold make up, hair products and her electric toothbrush. Some old creams and eyeliner pencils gather dust. Sometimes I look in these drawers, but the only thing I have thrown out is some expired medication and a bottle of face cream that smelled bad.

I wonder about the headboard that was left in the old house. I think it was very firmly attached to the wall and that is why it was not brought to the new house. I put her favorite yellow rose plates, cups and pictures – the ones that have not been broken – into the small wooden cabinets that belonged to her mother. I dust the pictures of her grandchildren, of my wedding and the blue glass vases she loved. I hang up some paintings and embroidery pieces I find. I am not deterred by the fact that she will never live here again.

I am racked by guilt over the way we moved her out. It was December 2019. My dad was very ill and I could no longer cope. Her caregiver and I devised a plan. She would take her to get her nails done, then drive her over to visit my Dad in his skilled nursing unit. My husband, my friend Kathy, and I would pack up her things and take them to the place we had selected in Frisco. We would get her room all arranged and take her there after she had seen my Dad. We even took the cat, Margaret. When we brought her upstairs and showed her her room she was, of course, very confused. Monte, the caregiver, stayed with her a long time. We told Mom she only had to stay there while Dad was in the hospital then she could come home. A lie that continues to haunt me. I remember when I had to leave she asked Monte if she was going to stay and Monte said “I’m not going anywhere.” But I have such terrible guilt imagining the fear my mom must have felt when Monte did leave late that afternoon.

How could I have done that to her? How could I have left her there? I thought she was in good hands, and I thought it was the best thing for all of us. But over and over again I look back and wonder if I did the right thing. I still can’t believe that I did. I was overwhelmed. I couldn’t cope. But what about Mom? She was overwhelmed, confused and scared. My Dad was too sick to have a say. People now will tell me that she doesn’t remember any of it. But does that make it right? I don’t know. I don’t know how to move on. I don’t know how to let go of that pain. I KNOW she’s in the best hands possible NOW and that offers a modicum of relief. But somewhere in the distant past I promised I would never do that to her, I promised she would just come live with me when she got old. We joked about just taking her out with an Uzi if it got bad. She said she’d rather that than end up like my Granny.

And yet, here we are. A million times worse than my Granny ever was, and a million times harder because Mom and I were so close, whereas she and her own mother were not. I promised Mom I would take care of her. I promised.

And I feel like I lied.

Some days are easier than others. Some days that compartment that holds my love for my Mom stays shut, hidden behind a stronger piece of me. But all too often I find myself looking at the door to that bit – the bit that is shattered and laying all over the floor in a million tiny pieces that will never, ever be put right again. If I am feeling strong I can look at the door and acknowledge it without opening it up. I can feel my love for my Mom and just feel warm and happy knowing that she’s there – somewhere – still there inside of me. 

Then there are the days where all those broken pieces overwhelm me and I have to try to put a few of them back together. I sit on her old bed at the house where my Dad still lives and her essence is so strong that I can feel her sitting next to me. She takes my hand. I lean my head into her shoulder. The tears fall and she wipes them away. I can hear her voice. Her sweet, beautiful voice that I pray I will never forget. She’s there and I’m nowhere. I’m lost among all those shattered pieces.

She’s on a different medication now and it’s making a world of difference. She’s so much happier and more alert. When I go to visit her whole face lights up and the first thing she says is “I love you so much.” We hold hands, and we sing silly songs like “There was an old lady who swallowed a fly,” and watch her favorites on YouTube like “Hallelujah.” Her old spark is there and I savor it. But then I ask her to look at the phone to see a picture and she says Oh, I see it. But she’s not focusing on the phone at all. Even now, even now she has the presence of mind to know what I want to hear and to say it. Even now, she tries to hide her illness. Even now she doesn’t want to be helped, or patronized.

I read her stories from the past, like Stone Soup and Leo the Late Bloomer. She loves this. She takes the books from me and endlessly looks at the pictures. It is so obvious that her hands were meant to hold books. I think this might be the part of herself that she misses the most. The books. The endless parade of books in our lives. I let her keep the books so she can look at them as long as she wants. I order more children’s books that I can bring her. We have finally found a connection that should have been obvious to me all along.

I miss the days gone by more than my heart can possibly acknowledge. I miss the way she was, the way she was my champion always. I miss talking to her about all the wrongs and all the rights in my life. I miss the way she was just there, just always there – at her table, reading her books, playing on her phone, watching TV. I always knew where to find her. I miss the way she almost always put me first – maybe selfish, but isn’t that what most Moms do? I miss how she was always thinking about me.

That compartment of my heart that is Mom – it might be ravaged with loss and regret and grief but if I can just push aside all that I might find that all that is left is the memories. The love she had for me. I can see her there, behind all the pain and she is happy. She is young again, and walking out with my Dad. And all her best days are ahead of her. She’s exploring Europe with her military wife friend Brenda. She’s heading up a library and excelling as a story teller. She’s got that crazy white cat, Gertie, at her heels and she’s even younger now – sitting on the back patio with her beloved dog Fella and the sun is shining and she’s waiting for her Daddy to play with her.

It’s getting late. Every day is one day later for my Mom. Every day she is one more day further away. And so while I can still reach her she will consume me. She will be and have All of Me and that is ok. That is the way I want it to be.