Thursday, June 17, 2021

Kitchen Floor

I remember the kitchen floor in great detail because of that day. Linoleum, white, avocado green and harvest gold. The geometric pattern was loud and detailed. I have memories of her on her hands and knees scrubbing the floor dutifully each week. She wasn't going to scrub that floor anymore. My brother and I sat in the kitchen chairs while my parents stood in front of us. My father was telling us that our mother would be moving out. He told us that they didn't love each other anymore. 

As he continued to talk my nine year old gaze was fixed to the linoleum. My eyes followed the pattern from one end of the kitchen to the next., I don't remember anything else about that day except the floor. 

I remember a few months later my uncle Jim and my cousins Mark and Brian helping my mom move into her new apartment. I skipped down the hallway of the smelly building, excited to see my mom's new "house". It hadn't hit me yet what all this meant. It hadn't hit me yet how this would shape my life and my sense of worth. 

My mom chose herself. My mom chose freedom. My mom chose Wednesday nights and every other weekend with me and my brother. 

Third grade. I remember crying to Mr. Kohnen my teacher, him hugging me and telling me it would be okay. He ended up being my favorite teacher. I remember turning into a latchkey kid at nine years old and having to walk to the bus stop with my 11 year old brother who wasn't crazy about the idea either because my dad had to be at work before school started. We had to leave the cocoon of our long time home daycare because my dad couldn't afford it as a single parent. We'd come home from school alone and allow the television to babysit us. Hogan's Heroes and the Brady Brunch looked after us until our dad came home from work.

He'd come home heartbroken and exhausted and do his best to feed us. Monday nights we'd go to the Town Crier Restaurant for fried chicken, the other weeknights were filled in by hotdogs and macaroni and cheese, goulash and overcooked pork chops. Fridays were pizza nights at Big B's. That was our routine. 

I don't recall the first few weekends with my mom, except when she took us to White Castle and she got sick from eating too many sliders. My brother and I would sleep in her bed, she would take the couch. I loved my brother and wanted to be his friend too, but I annoyed him too much and one night he bopped me in the nose and I bled all over my mom's sheets,

I remember getting chubby in elementary school as a result of inactivity and lack of supervision. I would snack on spoonfuls of peanut butter and chocolate chips, hoards of Doritos and stacks of Chips Ahoy. No one to say "have an apple or a banana!" There was no encouragement to get involved in sports or extracurricular activities. 

My dad bought a puppy early on, but then insisted we keep him in a kennel in the backyard. Everything seemed just out of reach for me. I would take refuge at my friends houses where they had both parents at home. Mrs Kinney has a special place in my heart for offering moments of comfort when I needed it.

I just couldn't shake the feeling that I was different, that my mom didn't want me.

Fast forward 38 years later. After countless years of therapy, 30 years of sobriety and many bouts of forgiveness my relationship with my mom had become good. we had worked thru the why's and how's of the divorce and everything after and we were good. We were on the same page. I had boundaries and was able to call her when I needed to talk and she showed up for me, finally.

Then she had a stroke. Parts of her were gone. The dynamic was altered again. My mom needed me in a different way now. And the part I needed from my mom was gone, clogged up with her stupid blood clot that damaged her brain. 

A few years have passed since that stroke and the decline in her cognitive function continues. She wouldn't acknowledge it, but watching her on a recent visit up north pounded in the reality that my mom had left again and I am without her. I must learn a new way to live with my mother. To love her without conditions. To
give to her without a payback. Expect nothing in return. 



There is no happy conclusion to write yet. I am sad and exhausted. There isn't a finish line for hard times. There isn't a quota either. I am trying to take my life day by day, lesson my burden by asking for help with things others can do for me, practice self care and know,  really know that this is not my fault but it is my responsibility.


Sunday, March 28, 2021

Be Still?

 I just googled "trauma and loss". then "Grief and loss", then "loss over and over". No answers for me there.

I recently talked about Dermot to some hockey moms who asked me questions about him. How old is he now? Do you have someone stay with him when you go out of town? What does he have? What is his prognosis.

I appreciate these questions. I welcome the opportunity to shine a light on our experience, but I also underestimate the power of saying the answers out loud. more than once in a day. its real, it always is, but when you say it out loud, other people hear it. Other people ponder the possibility. that is scary. 

I spend the majority of my time "running " from these feelings of reality. running from the constant loss that permeates my life. 

I have "be still" tattooed on my body as a reminder to stop running, but it's the hardest thing for me to stop.

I run in various ways. I actually run, 3-7 miles every few days. I run by keeping busy. I run by spending money, ordering things off the internet to feel some sense of power that eludes me. I focus on others and their problems and try to help them. I run by trying to orchestrate my surroundings and the people who live in them.

Then things happen...

  • My emotional support dog, a six year old Weimaraner, dies suddenly of a brain tumor. 
  • My caregiver for Dermot lets me know that she is done on June 1st. 
  • One of Dermot's nurses gets removed from his schedule. 
  • I get a notice from the high school inviting us to a virtual open house for Dermot impending move the the high school. 
  • My husband sells his car, 
  • My 50th birthday sneaks up on me
  • My mom's brain continues to evolve and change into different less improved versions of who she once was.

My question is. what do I do with all of this? How do I cope? I am certainly not alone in any type of constant change or trauma sneaking back into my life at unexpected times, but what's my next move?

Should I order another pair of running shoes online? should I decide to stop eating carbs and only eat "natural" food? do I retreat and hide under the covers until everything goes back to "normal"? I don't know.

I don't know...It is spring though. Spring always bothered me. I could never trust the first warm day, I knew there was always six inches of snow right around the corner. I prepare myself for the worst so I don't feel like a chump for taking my snow tires of my car too soon. I don't plan ahead because I'm positive nothing will turn out the way it's planned. Our team loses, the dog dies, the kid can't walk, the mom is getting old and the nurses quit.

Hope?

I just went through Step two with a sponsee in the Narcotics Anonymous book. (We came to believe that a Power greater that ourselves could restore us to sanity.)  Its not a book I read too often, but for some reason I picked it up and we read out loud. "We trust that we are undergoing a fundamental transformation, even though we may not yet understand its full implication for our lives. As painful as it seems, we must change."

My whole struggle has been about getting to the finish line, to be done with the changing, be done with the pain of transition and loss, every ounce of my being fights the change. my instincts take over and I attempt to control the uncontrollable, to keep what I have steady and juggle everything without dropping anything. the book goes on to tell me: "If we trust that there is growth despite the pain (Which I totally know already!) we can walk through these difficult periods more readily.

So don't underestimate your feelings, don't try to suppress or manage your feelings. FEEL your feelings. Could it be that simple? Probably. But its just as simple to forget how simple it is.

Loss will always occur, Change is ever present and I get to choose how to react. I can always run, but the growth happens while being still.

 

Wednesday, July 1, 2020

Choose joy?

We are five minutes out of St. Cloud on Highway 15, at a stop light I contort my torso to reach back to put the oximeter probe on Dermot's tiny index finger. He sounds like an old fashioned coffee percolator...O2 78, yikes.

"Dermot, you have to cough for me buddy!" no response.

I'm on the highway, looking for the next turn off. One more mile, no coughs, the oximeter is beeping double time now. Finally, I turn off the highway and into the Walmart parking lot in Sartell. I keep the car running because of the heat, get out and enter through the sliding van door to the back.

I move around Cookie who is laying dutifully on her bed and reach for the deep suction catheter in his supply bag. Got it. Still panic beeping. I carefully thread the long, thin plastic tubing down Dermot's mouth and turn the suction machine on. Sucking, sucking, a moment of breath holding and up comes a giant glob of mucus all over his bib. That's what he needed. O2 level? 89. Really? Still something in there, I try again, thread the tube down his throat, this time he's more stubborn about coughing, the rest is further down in his lungs and will take some work to get it out. I'm sucking, he's struggling, then after a full minute, success with another giant blob of egg white consistency comes up, I wait a couple seconds, O2 is rising, 92, 94, 95.

Why are you so congested? What have I forgotten to do? Nebs are on time, atropine drops too. Wait, he's due for a new Scopolamine patch. I contort my body once again, climbing over my very comfortable Weimaraner who's taking up the entire back seat of the van, to get to the bin where his meds are. I search for the patches, got it. I apply a fresh patch, it doesn't stick, why isn't it sticking!!!? Fuck it, I get another one, (conscious of the fact that it will screw up his monthly prescription) this one sticks...O2 91.

Geez. Let me think. Okay we have an hour to go until we get to the cabin. I tap the fresh oxygen tank hanging from Dermot's wheelchair and set it to one liter. Carefully wrap the nasal cannula in his nostrils. That should do the trick.

Okay, I think I'm ready to get back on the road, except Dermot's shirt and bib are sopping wet. I tap on my 16 year old's shoulder who has been purposefully ignoring the current crisis by watching Gangs Of New York on his phone and his air-pods. Owen, I need to borrow one of your t-shirts for Dermot, He's all wet. Rolls his eyes, grabs a shirt out of his bag and hands it to me fully aware that it will get drenched in drool and mucus.

Okay, I'm back on the road...

Everyone in the car seems to be doing well. I seem to be doing well. I'm proud that I once again, conquered another crisis.

But as I drive I feel my breath getting shorter, my rib cage constricting and I am requiring multiple heavy sighs to stay calm. I'm pretty sure I'm good. I can handle this. I can get to the cabin.

Dermot is comfortably resting now, along with the dogs. Owen is struggling with how to view his Scorcese film while battling the bright sunshine coming through every window in the van...

Almost there. I realize, I'm holding my breath. Just get to the cabin.

We arrive, the dogs jump out with excitement, Owen peels himself from the passenger seat and I emerge immediately looking for my husband to take over. Where is he? My father-in-law greets us, but no one else. Where's Joe? I get Dermot into the cabin, my relatives are in their own states of relaxation. "Where's Joe?' I immediately ask. "out back working on the deck" my sister-in-law answers. My mother-in-law peppers me with questions about dinner and if she's made enough and what else should she do. I almost can't answer her because its taking all that I have to keep it together.

Joe comes out from the back, "Hi honey, How was the drive?" "Shitty" I reply. "What do you need from me?" "Take over, I need a quick break".

I run-walk into my room, close the door, lean my back up against the wall and slide down. Sitting for a moment in stunned silence, then it comes. The heavy uncontrollable breathing and the tears. The gut wrenching pain in my chest. I cry and cry. Ryan enters to say hi, I shoe him away. I cry a little more, Joe enters. "You okay?" "I am now, I been holding all that in for way too long". 

Acknowledging pain and traumatic events is crucial.
I had been "Choosing Joy" for so long, I forgot that feelings need to be felt. Sure, joy is great and the idea of choosing it sounds swell, but my body does not allow me to not feel my feelings for too long before it blows. So the idea of positive thinking, and choosing our feelings might be a clever marketing ploy to sell plaques and notepads.

I think "Feel your feelings" might be a more productive meme.

All of us are dealing with something and all of us have feelings about it. But not all of us think its okay to feel the way we do.

Afraid? Choose Joy! Angry? Choose Joy! Sad? Choose joy! Lonely? Choose Joy!

Now, don't you feel better? I didn't think so.

Afraid? Tell someone. Angry? Talk about it. Sad? Ask for a hug. Lonely? Call a friend.

Happy? Awesome, choose joy.


Wednesday, June 17, 2020

A snapshot of inside my head.

Covid 19
racism is alive and well
no school
stay at home
save money
gaining weight
my son has no friends
my other son has to stay home for the rest of the year
i am constantly trying to find my purpose
I miss my mom
I miss my friends
I miss places
I grieve for my former life
I am not alone, but knowing that doesn't make it better
Society is in upheaval
people are dying
my oldest son is never home
I'm afraid most days
I just started online shopping again
I just stopped weighing myself everyday
I need a fucking haircut
its really hot outside today
I'm trying to plan my tasks for the day and i never know where to begin
my youngest is always on his screens
he screams at me when I tell him to do his chores around the house
he is really unhappy
a little bit of laundry,
then i jump to the dishes
I should really walk the dogs
I should really make Ryan walk the dogs
maybe I should take them to the dog park
is it too hot for the dog park?
sorry the doorbell rang, yep its too hot
he screamed at me again, at least I got him on his bike
calling his friend's mom to get an answer
why won't he play with his old friends?
talked to my husband, I feel a little bit better
we are all in this together!

Thursday, January 23, 2020

Lipstick.

Lipstick might be the cure right now.

My mother always says: "let me put some lipstick on so I don't look dead." I remember visiting my grandma in the hospital when she was actually dying and she always had lipstick on.

So acting as if might be the solution right now. I've been angry since I drove home from Dermot's last doctor's appointment seven days ago.

His nurse was convinced there was something wrong with him, I was not. At the time I thought I was just being selfish because the thought of going back to the same building where we had been last week and the week prior for and eleven day stay made my skin crawl. AND, I told myself that I would trust the nurses perspective more, so we were off to the doctor for a mysterious rash/swelling foot thingy. Appointment was at 10 am, which meant I'd miss both opportunities to workout at my new favorite gym. Please let me explain that moving my body a lot everyday  is essential to my mental health. We were there until 11:40 with two doctors saying nothing was wrong, a nurse asking way too many "routine questions" and "just a quick visit from the social worker" and then, I immediately had to go to a two hour meeting at the school district and sit STILL.

Trapped is how I felt. Being in two places where no progress is made, my time was not my own and my body was screaming to get out was not my idea of a good day.

The interesting part to all of this is how I processed this for the next few days. Feelings came out. Tears were shed, sweat was earned from my late night workout sessions. I turned into a rebellious teenager. I cracked my taillight of my Jeep backing into the trash cans, I ate a shitload of chocolate (Heath Bars are my current favorite) I played copious amounts of gangster rap really loud in the house and didn't do my laundry for days. Why? Because its all I could do.

I can't run away and stay out all night drinking at my boyfriend's house, I can't call in sick to my job at Dayton's and get drunk at my friend's mom's house, I can't skip school and sleep all day either. But all of those things sounded SO much better than listening to my son's regular pediatrician explain things to me that I ALREADY KNOW FROM 13 YEARS OF MY SPECIAL NEEDS MOM CAREER!  Ibuprofen is bad for your kidneys? No shit Sherlock. The parking ramp is in the second floor? Are you fucking kidding me right now? The autonomic nervous system in my son's body is failing? NO WAY...

So what have I learned from this episode of teenage angst?

It will happen again
Listen to my instinct with Dermot, I know him best
Have emergency chocolate in my van.
Grace is essential
Patience is a choice
so is Anger
Both choices are the right choice.
and if I've forgotten already: this will happen again.

Life is a series of peaks and valleys, the moment you get too comfortable in the plateau is the moment God reminds you to feel.

Be angry, be hurt, be rebellious, be heartbroken, be desperate, be honest and be loved.

You're going to be Okay.



Wednesday, June 26, 2019

There's no way around it.

The nurse is downstairs with Dermot. I'm upstairs at my computer. I'm gearing up for my second trip to Target today. The prescription was sent to the wrong pharmacy and I'm chasing it down. Only took four phone calls and about seven minutes on hold.

My quiet panic that lives beneath my sense of well being is slowly creeping to a low hum. My heart is beating a little faster and my insomnia is getting in the way of a good night's sleep. Oh and also the fact that every other night I get up in the middle of the night with Dermot to remedy his lack of oxygen. Turn it up? Nebulizer treatment? Or the ever popular deep suction. Last night it took all of those. This is typical these days and as my husband and I trade off every other night the lack of sleep over a twelve year period is taking a toll on both of us. Is this his new baseline?

My short term memory is shot. I stutter occasionally, lack of desire to participate in activities and a general feeling of isolation. Being awake in the middle of the night when everyone else is asleep will do that to a person. My health could be better, my ulcer is under control, and I'm still off the coffee. Have you ever had to deal with sleep deprivation without coffee?

This life is hard, there's no way around it. There's no way around it. That's the hard part. No escaping the pain of the obligations of being Dermot's mom. His condition is degenerative, meaning:(of a disease or symptom) characterized by progressive, often irreversible deterioration, and loss of function in the organs or tissues. Meaning, he will slowly die from his symptoms. Deep breath.

We discovered thru some recent testing that he does NOT have mitochondrial disease. Just when I had finally figured out how to spell it!

Dermot has been diagnosed with: BPAN: (Beta-propeller Protein-associated neurodegeneration). So that's even harder to say. The diagnosis isn't much different than mitochondrial disease, but now its official. There's no more wondering. If you'd like to find out more here's a link: http://nbiacure.org/learn/nbia-disorders/bpan/



I know what to expect, what to look for. I think I liked not knowing better.

I speak with friends occasionally and they all seem very relieved that we have nurses for 40-60 hours per week. I'm relieved too, but that only brings up new issues. Like the fact that we have nurses in our house 40-60 hours per week. then they ask about night nurses. I tell them we have one every once and a while. Last week, fours nights! This week, one night. so there isn't any consistency to it. we are taking what we can get. 

Truth is I'm scared most of the time. I look to outside fixes to my internal pain. Shopping isn't working, exercise isn't working, carb loading isn't working. Time to search for Grace again. TIme to ask for help again. Time to surrender to my life and stop fighting my feelings.

Deep breath.

Wednesday, March 6, 2019

Words of wisdom

I haven't eaten a full meal since last Thursday. each day since it's gotten worse. Stomach cramps, like there's a guy inside with a torch, walking around my intestines lighting it up. The only thing that helps is to stop eating and lay still. Six days later, six pounds lost, I'm surviving on applesauce and Sprite. Today is a big day, I'm going to try to eat a banana, if that goes well I'll move on to some plain mashed potatoes. Ugh.

Doctor was puzzled, not the stomach flu or gallstones, prescribed some Zantac yesterday. Its helping a bit. Then prescribed the diet of rice, applesauce, mashed potatoes and toast. Awesome. the words stomach ulcer are in play now. WebMD confirms almost all symptoms, call into the doctor too.

I'm a week away from my 48th birthday and I probably have a stress induced stomach ulcer. it probably doesn't help that my diet is comprised of three cups of coffee a day, an afternoon diet coke, numerous handfuls of M&M's, daily popcorn while watching my midnight Netflix shows, six hours of sleep each night and 7 days a week of exercise.

I'm running away and its catching up with me. "Worrying is paying interest on a loan you don't have" I used that quote forever. This has been different, I haven't been talking about everything. I've decided I can wait and not visit my therapist right now "there's nothing she can do to help me" . So I internalize it. I exercise, I stay up too late, I online shop. "your body will always find a way to get the feeling out of you, whether you like it of not..."that's another quote I use frequently. Ugh.

Dermot's surgery is tomorrow morning. We've been waiting for an entire moth, A month to let the anxiety build up, grow in my belly. Manifest through bags of peanut Butter M&M's and Grande nonfat latte's...I can feel it boiling up as I write. Yuck.

I also need a crown on my molar, my step-dad just got a stent placed to cure a blockage, my mom is far away, I put my phone thru the laundry and my youngest is turning into a compulsive liar and is also racked with anxiety and there's a constant parade of nurses in and out of my house...Fuck. I wonder when I'll get few weeks of smooth, calm "normal"?

There you go, that's me in a nutshell. I think when I spit things out I feel better. "50% of the solution is telling someone else about it", that's another one of my words of wisdom.

Maybe I need to remember to have faith in myself. maybe I need to remember to have faith in general. I am where I'm supposed to be right now, "the answers will come if I am still enough to listen..." Last quote.

Thanks for reading. Please remember to think of Dermot tomorrow morning at 6:30 a.m. and send some good vibes while you're at it...


Thursday, February 14, 2019

Kidneys

They help the body pass waste. They also help filter blood before sending it back to the heart. 

So there's two tubes coming out of Dermot's back. Those tubes are connected directly into his kidneys to relieve excess fluid and preserve kidney function. Dermot has a peanut sized stone in his right kidney (unshelled) and an almond size one in his left. They are actually many stones that have fused together.

Through many tests, CT scans and ultrasounds we discovered the stones after a mysterious illness that included vomiting, high fever and heart rate and aspiration pneumonia.Last week we brought him to Mayo Clinic and St. Mary's Hospital for the nephrostomy tube placement. Because of hospital permission issues and doctor schedules, Dermot has to wait an entire month for his removal surgery. March 7th is the date. 

We hope to have all the stones out on that date, otherwise, the tubes stay and another procedure is scheduled.

Dermot now has a G/J feeding tube, two adjustable metal spine rods and two nephrostomy tubes attached to urine bags in his 77 pound body. 

Those are the facts of the situation. Also facts: My sadness grows with every intervention and every foreign article in him. My ability to concentrate lessens, I am unable to preserve my sense of well-being and I find my way into a cocoon that protects me from my feelings. I choose not to answer the call from a dear friend, because then I will have to talk about the situation. My to-do list gets littered with meaningless tasks to keep me "busy", and when I talk to you I skim over the topic quickly with strong non verbal ques pleading with you to not to ask too many questions.

The nurses have taken over the calls to the doctor because after two calls of not getting the right results I was a puddle. I gratefully delegated this task because I know I am not at full strength yet. 

In the twelve years of being Dermot's mom, I have learned a lot about myself. I know when it gets to hard, I retreat. I procrastinate. I online shop. I worry that it's too hard to be my friend. I eat way too much chocolate. I stay up way too late. 

But only for a while, then I come out of it. I show up at the Y. I start baking again. I share in my twelve step group and cry. I start talking again. I wake up every day and do the things I need to do. I pray. I get better. This is my cycle and I know it, so I allow myself the chocolate and the blanket fort and the packages delivered from UPS.

I'm struggling for a perfect end to this essay. something that will fulfill this message. I don't know what it is or what it should be. I'm beginning to feel gratitude. That's a feeling i notoriously hate, and yet I feel it. Maybe that's enough for now. Maybe I don't need to wrap everything up in a pretty package for you.
..



















Wednesday, October 10, 2018

Current life issues

I just "googled" depression. Not sure why, I know what it is. I'm pretty sure I'm in a chronic state right now. Lack of motivation, aching muscles, sleep issues and a feeling of impending dread.

Or perhaps it because of my current life issues:


  • My beloved old beagle blind, deaf and peeing everywhere. She's seems to be the last remaining part of a life before special needs. a life that was easier. where choosing my outfit was a major decision and the make and model of my car defined me. I'm aware that her time here is limited. and I mourn her and the life that she represents every time I clean up a puddle or wipe the crust off her chin.


  • Dermot's nurses have been a godsend and a cause for worry. We have someone in our house each morning at 7 am to wake Dermot up, dress and prepare him for school while I sleep in and drink my first cup of coffee, away in the dining room. A physical relief, but emotionally a step back from his day to day care. We have nurses in our house every day. Every day....the enormity of that statement sets in, every time I allow them to enter the house, every time they brush his teeth and I don't. Every time I place the oximeter on his finger each night.


  • My mother just left for the season to Arizona. After her stroke I had to change my expectations of our relationship. No longer is she a source of support and stability, no longer is she the matriarch of the family. I have had to continually remind her of how to use her phone, listen to her complaints of isolation and dependence on others. I watch parts of my mother fade away and morph into a new version of herself. Confidence gone, fear flourishing in her thoughts and loneliness following her every move. I am in charge now.


  • Politics (no need to say anything about this topic, right?)


  • This may sound petty, but I also miss my hair terribly. Last spring I found it necessary to rid myself of my mane. I thought it would be liberating, a symbol of rebirth. But instead, I feel naked and exposed. I am not this person, I know I am not my hair, but I am not this hair. I wait, patiently, excruciately, as it grows again. My hope is, as it grows, I will grow back into myself.


  • Last year I volunteered for everything, this year not so much. I'm looking for purpose and connection without overextending my time. I actually entertained the idea of going back to work, until the first week of school when Dermot was admitted to the hospital for a respiratory infection. Then I realized its not yet feasible.


  • We have an amazing up north getaway place that we just can't seem to get away to. The stress of leaving town with Dermot and all of his equipment seems too much right now. So it stays empty, waiting for family and friends to fill it with joy and activity.


  • My oldest is flourishing. An A student, a devout christian, a Sunday school teacher, cross country runner, hockey player and the kindest kid you'll ever meet. He's growing into a person I couldn't have dreamed he'd be. 


  • My youngest is still a challenge for me. His personality and issues are so incredibly typical that I find it difficult to take seriously. My perspective is so skewed towards the worst, that a call from the principal doesn't phase me, or a barky cough doesn't worry me.  

So I know these life issues are only temporary. Hair grows back, old dogs die, most children grow up leave the nest. I'll survive this period. it's okay to be sad, to feel the feels. I think that's why I love the seasons so much. they symbolize life, death, growth and rebirth. It feels better when I write about them. Perhaps next I'll write about gratitude, probably not though, me and gratitude aren't speaking right now...





Wednesday, March 7, 2018

The Loss


Here's grief again.

It started with a phone call from my brother. I wished him a happy birthday and he returned my greeting with a sullen voice. "I guess you haven't heard yet", "What?" I answered.
He returned my question with the news that my favorite aunt, and come to think of it, my only surviving aunt was dead.
"What? WHAT?! What?!!" I stammered.

Only weeks earlier I had received news that my mother had suffered a stroke, so I was expecting him to say something about her. But this time it was her twin. Her alter ego. Her best friend. 

Judy was everything my mom wasn't, and my mom possessed the qualities that eluded Judy.



They were yin and yang. Opposites in many ways, but when they were together they were a site to behold. My mom was the driver, Judy picked the restaurant, unless Joni objected to the cuisine. They could talk for hours about the past, their kids, their grandkids. They’d giggle about each other. Mom would drag her out shopping and Judy would dutifully go along, just wanting some time with her beloved sister.

These women didn’t grow up easy. They were born in 1945, premature, each weighing close to two pounds. There were no PICU units back then, they were stuck under the warm lights together and expected to grow.

Grow they did. I only know the gory details that they’ve share with me. It involves a kind and boisterous father full of red hair who worked for the railroad and a hardworking, fast talking mother who worked as the voice of Roto-Rooter most of life.

Third in line after an older sister from their mother’s first marriage and an older brother who was driven to succeed, these young girls added what I imagine would be trauma, love and joy to an already complicated house.

These girls would grow, not resembling each other in the least, they were dressed alike for years as twins. They had separate jobs. I only know my mom was the one sent to collect my grandfather from the bar when he’d reached this absolute limit according to my grandmother. I imagine Judy was home helping with dinner or smoothing over the tension of the alcoholic household. Their identities were cast at a very young age, their roles in life defined by alcoholism.

They grew up, they both acquired jobs at Prudential as typists, but as Judy once told me later, she never cared for it.

I don’t know who was married first, but within a year of each other, they were on their way to starting families of their own. Living 30 minutes apart didn’t seem to difficult.

They also became mothers within a year of each other, both having sons. The sisters had another child within a year of each other (that’s where I come into the story). That’s where their lives start to diverge.

Both had married into alcoholism. I’m cannot tell you if the signs were there for them to exercise caution, but I can tell you they gravitated to what they thought was normal, and comfortable. It took my mom eleven years to decide to leave. There is much more to the story that maybe I’ll share someday, but not today.

But Judy stayed with her husband. She had a daughter, six years younger than me, whom I adored as a child. A girl cousin to play with and dress up! There were always rumblings about Judy’s husband and his drinking. He was the uncle at holidays that always took it a little too far. At seven years old I remember my mom wondering about their future. Then, there was four! Aunt Judy was pregnant again. I remember the surprise from my mom, another baby!

Her third boy seemed different, or maybe its because I was older. He was light, funny, a blessed distraction whom the family celebrated.

I remember going to their house frequently as a child. I remember so many things fondly.

I remember fondue parties, Judy always in the kitchen, standing behind the red countertops preparing cheesy meals and reveling in her hosting abilities at the annual family reunions. I remember her feather light blond hair always being brushed. I remember sitting in the way back of her Country Squire wood-paneled station wagon going to McDonald’s in the Valley West shopping center for lunch. I remember playing in the backyard of their house in prestigious West Bloomington till after dark, and hearing her yell all her kids’ names in succession, to make things easier. I remember her crazy Old English Sheepdog, Tigger. Matted fur and no manners. The best was when she’d yell for Tigger to come in the house, and the cousins would always think the neighbors heard another word that started with N. I remember feeling something at her house that I missed sometimes at my house. I felt special. No matter what was going on in her life, no matter what the source to chaos filled her brain at any given moment, she had the ability to make me feel special, loved and safe.

I remember when she finally got the guts to stand out on her own. I was older, I watched her. She took her kiddos and left. I barely know any of the details, only that it was time for her to leave and bring her kids with her. Bristol Village seemed to give her a new life, a sense of possibility. Here the twins were in tune again. Trying to make it and start over. Free from the bullshit.

Judy thrived and struggled all at the same time. She ended up getting her house back. It needed to be gutted. Cleansed of the past to start with a clean slate. My brother came to the rescue. He brought his giant hammer and got to work. Dumpsters were filled, kids were working, the house was coming back to life, and so were the inhabitants. Little did Judy know, as much as my brother helped her, she helped him right back. She gave him purpose, unconditional love, and a sense of belonging that was missing in our household.

As the years went by, Judy found a new career as a nursing assistant at a care facility for seniors. I couldn’t think of a more perfect job for someone with so much love to give, that is until she became a grandmother.

Her daughter gave birth to twin boys. Premature, just like her, and just like her, they survived and thrived on all the love given to them from their grandma Judy. She took over caring for the twins, so her daughter could go back to work. Those boys kept the light in Judy’s eyes and the unconditional love flowing. Field trips and playdates, she was there. Illnesses and accidents, she was there. Mundane days of routines, she was there. And when their little brother came along, there she was, best friend to number three. No questions asked. I always felt like part of Judy never really grew up and that’s why she was so great with kids. She understood them, and they understood her.

As I got older I didn’t see her as much, my second son was discovered to have many disabilities, and I was caught up in the life-changing whirlwind that is my life now. Of course, I regret now not seeing her more often and silently shoving $20 bucks in her purse whenever I had a chance and she wasn’t looking. But what comforts me is if I were to tell her this now, I know exactly what she would say. “Oh Honey, it’s okay, I understand. You have so much on your plate. You know me and my friends at church pray for Dermot every day, I love you Suzy”.

It sounds that in her last few years she devoted much of her life to her church and the rest of her life to her family. She never turned any of her children away when they needed her. I don’t think it was possible for her to say no. Her love was that strong. Her sense of forgiveness was remarkable. Honoring her husband’s memory after he past away too early and being the rock and the soft-landing spot for all her children to land.

If I had one wish for my aunt Judy, it would have been for her to be more loving and kind to herself. I wish she would have realized how loved she was, and how important she was to so many people. And, I wish I would have told her this when she was alive.

Rest in Peace Judy Mertz. Your spirit lives on through every life you’ve ever touched and every heart that feels broken by your passing.

(Disclaimer to my family: This is my memory of Judy, the facts may or may not be accurate, but it’s my truth)

Saturday, January 6, 2018

A letter to my former self.

Dear 35 year-old self:

Don’t worry, I’m coming for you. You are always in the back of my mind. I’ve kept you there for safe keeping. Until I was ready to see you again. I revisit that day in my head, but not on purpose. Mostly when I drive by Hennepin Ave. or walk down the hospital hallway. I’m relieved that they remodeled the scene of the trauma. Too much happened to you in that room for you to go back there, ever.

The doctors moved to a different building too, so that horrid day will be easier. When it pops up in my mind it usually brings me to a silent panic, then I stuff it down into the darkness again. Not ready to tell you what I know now. You were free back then, oblivious to what was yet to come. Still living in a world of fancy cars, lavish trips and casual friends all around. Sure, there was that one operation, but it was a common procedure, almost as common as appendicitis. You weren’t unique, you weren’t alone.

You were still coping well enough. Worn down a little by his constant crying and your commitment to comfort him, but still, not unique. You wore the $170 jeans you purchased when you got to prebaby weight. You pal’ d around with the other moms, attended baby yoga classes and still sanitized all the baby bottles. The milestones weren’t so poignant, the differences weren’t clear yet. They’re all babies in strollers, right?

I want to tell you what I know now. I want to tell you what happened. But mostly, I want to tell you that you are going to be okay, and you will never be alone. Even when you feel like you have nothing left to give and no one left to cry to, you are not alone. Hold on. Hold on tight. It’s going to hurt, a lot. And it still does. But what you discover and what you become is so remarkable and reassuring that I had to come back to you and tell you.

That day in November, ten years ago will stay with you forever. It will change the path of your life and your purpose for living. It will cause you immeasurable amounts of pain and trauma. It will make you do things you never imagined you could do, achieve things you wouldn’t dream of trying. Hold on. Hold on tight. It’s going to hurt, a lot.

You will slowly transform your values and your perception of a good life. Your perspective will broaden and you heart will break. Over and Over.

The people in your life will be there and then they won’t. Then they’ll be back, and then they’ll leave again. You will expect too much from them. You will lash out at everyone that doesn’t say the right thing. You will withdraw from people who care about you, because it hurts too much to see their lives unchanged. You will sit in your sunroom one evening, months after his first seizure and you will breakdown. You will feel defeated. But, you will finally ask for help. Help with your family and your kids and most importantly, help with your soul.

You will finally call that woman you’ve been watching. The one that seems at ease with herself and others. The one whose eyes are filled with pain and knowledge, but whose heart is full of kindness. She will say “yes” and you will start to heal. Hold on, hold on tight. It’s going to hurt, a lot.

You will meet with her weekly. While your third baby grows inside you, you will meet, and you will heal. She will teach you to be better, to be who you are meant to be. The person who you will become. You will show up and you will roll your eyes at all the work she makes you do. The inventory, the prayers, the routines and the amends. It will all hurt. It will hurt, a lot. But every hour and every day, you are healing. Keep showing up. Hold on.

Your friends will change. Some will depart. Some will prove to you that they are there for you and you will learn to be there for them too. Some you will be angry with and some you think you can never forgive, but you will. You will forgive them, because they were doing the best they could. They were showing you how to exist in this new reality you are facing. Hold on. Hold on tight. It’s going to hurt, a lot.

Your family will disappoint you. They will say the wrong thing. They will do the wrong thing. They will be selfish and unaware, but they’ve always been who they are, you will just expect more from them than they are able to give. Some will leave you. Some will stay and surprise you by their grace. Some you are still to this day, unable to face. Please let that be okay. You have tried the best you can for now and that needs to be okay. You will reinvent what family means to you and you will invite friends to be your family too. Blood isn’t a requirement to be family. Love is. Remember to hold on. Hold on tight. It’s going to hurt, a lot.

You will grow. You will find your voice. You will be forced out of your comfort zone constantly. You will become brave out of necessity. Please don’t forget to tell people how scared you are. They will help you. They will comfort you. You will become an advocate for your son. You will educate yourself on all things “special needs” and become a resource for others. You will ensure that no mother will endure what you are enduring, alone. You will connect others to your new-found tribe of special needs mothers. You will build a community from the ground up of mothers that know your pain, that have walked in their own version of your shoes. You will not be alone. Hold on, it’s still going to hurt. It will hurt a lot.

There is no running away from the hurt or washing the pain away. You will try to run it out of your body. You will injure yourself. You will try weekly therapy, that will work sometimes, until it doesn’t, and you will take a break. You will try acupuncture, chiropractic solutions and yoga. These solutions will help you. You will jump off a 35 foot platform with only a metal wire connecting you to the earth. You will speak publicly about your experiences to a room full of hundreds. Keep trying new things. Keep searching for joy. There will be moments of joy everywhere, you will learn to notice them and appreciate them more than before.  But it’s still going to hurt. A lot.

There will be many hospital visits and ambulance rides. Too many to count. You will show up for every one of them. You will hold his hand and advocate for him every time. You won’t let anyone silence your voice. You will second guess the nurses and fire some doctors. You will say yes to some new therapies, and no to more medications. You will learn medical procedures only fit for trained professionals and you will shine as Dermot’s mom. You will find your place in all this new life. Hold on, hold on tight. It’s going to hurt, a lot.

You will trust people with him and allow others to love him and know him as you do. People will love him and find value in the gifts he brings to their lives. Some of these people will make mistakes, but it doesn’t mean they don’t love him. They will keep trying. Because you keep trying. They will love him because they love you too.
You will learn to care about yourself more than you do now. You will learn to be compassionate with yourself. You will still find self-care to be a bit impossible, but most days you will be able to carve out a bit of time to do something just for yourself. Not because you want to, but because you must. Hold on. Hold on tight. It still hurts. It hurts a lot.

You will find yourself almost caught up to today. You will suffer frightening anxiety attacks. Don’t be afraid. Your body has been holding on to too much trauma. Ten years of reoccurring trauma. The anxiety attacks are your body’s way of telling you, it’s time to let go. It’s time to release your grip. You don’t have to hold on anymore. It will always hurt. A lot. But it’s okay to let go. You are not alone. You never were. The universe has been watching, the future you is telling you to let go and you will survive. Let go and ask for help, again. You will start a medication for your anxiety. Never mind that you said you’d never do that. You will start an alternative therapy to heal your trauma. Never mind that you thought it would never work. Let go and keep going. I’m here for you. I always will be.

Your 46 year-old self.









Saturday, December 2, 2017

Step by step

In AA the 4th step tells you to do a personal inventory.

It is not pleasant or easy, it takes time and honesty. I've done more than one of these inventories in my nearly thirty years of sobriety.

I've learned that unmet expectations is my downfall. Or perhaps having high expectations of others. Expecting people to show up, do what they say they are going to do and know that things will run smoothly, without surprises.

Growing up my life was never predictable. I was a latch-key kid, parents divorced when I was in the third grade. My mom left. My dad drank. The television was my babysitter. My brother, older by two years was either my partner in crime or my worst enemy. I learned at a very early age to take care of myself. Mothers leave. Fathers disappoint you. We are on our own.

If I took care of myself, then I wouldn't have to depend on anyone else, thus relieving me from the worry of being disappointed. This way of living worked well as a survival technique for a long time, until it didn't.

Even after getting sober in high school, I was on my own. My counselors in treatment encouraged me to get a sponsor, call your network of friends, stay connected. No thank you, I'd say in my head. "I got this." I'd decided long before.

So I did, I lived my life essentially alone. I always seemed to have a boyfriend and some work friends, but I never depended on anyone, because I knew better. Friends leave, family disappoints you.

I suppose I was always a mystery to others, hard to get to know, tough, confrontational and hiding behind my sarcastic wit. But I didn't know any other way to live. There have been a few that have broken through, tried harder than others and I let them in bit by bit. But it took years and I was always uncomfortable and scared they'd find out I wasn't worth it.

The step four comes into play for the second time. I'd been sober for 18 years and had never followed my treatment counselors advice to get a sponsor. My second son was 18 months old, never going to walk or talk and I was defeated. I had found my point of surrender. It came to me on a
November evening, sitting in my sunroom. I was either going to have to risk asking someone for help, or run away from my family because the future was so grave I couldn't see myself handling it.

I asked for help, a phone call I'd been trying to make for months finally happened. I asked for help and the woman on the other line answered. We started at Step One. We started from the beginning. we met every week, she showed up for me. Every week. I started to trust people again. I built my foundation up from Step one, and over the next 18 months I got thru all those 12 steps. I acquired a tremendous amount of grace, patience, compassion and courage.

I had found the personality change,(i.e. Spiritual Awakening) I'd been working towards. I liked who I was, I was comfortable in my own skin and could look other people in the eye. I shared my newfound change with others, I began to help others get sober and find their own personality change, I was fulfilled.

As with most things that are good in life, they need to be cultivated. Meetings must be attended, routines must be established, the work must be done, every day. But when things are going good, I tend to slack off, which means that when things aren't so good, I'm not equipped to cope as well as before.

I think of my sobriety every day. I cherish it. I am grateful for it. But life hasn't been easy the last couple years and my tool box is in need of a refresh. Those routines have gotten stale, the meetings are weekly, and the rest has taken a backseat to life.

Life has dealt many blows the last couple years. Loss, crisis and trauma have thrown me out of whack.

I imagine myself as walking down a path. With each new crisis I trip. An ambulance ride for Dermot's seizures, a family trip gets cancelled, a friend doesn't call back, a race to Dermot's school to discover his broken femur, Mom leaves early for home, Dad forgets my son's name on a phone call, major surgery for Dermot, best friend moves away, another ambulance ride, hospital stay, a beloved teacher gets cancer, our family alone again on a holiday, the cat dies, watching the O2 monitor constantly.

By now, I've tripped too much. I'm not even on the path. My coping mechanisms aren't sufficient anymore.

It's time to modify, time to ask for help again. I can't do this alone. I need people, as much as I'd rather not have to depend on anyone, I have to try.

My sponsor suggested that I put the twelve steps in context of dealing with Dermot's illness. To write it out.

Step one: I admitted I am powerless over Dermot's illness and that my life has become unmanageable.

I am suffering from depression and anxiety. I see two therapists for different issues and I started taking Lexipro. I've asked for help. I am scared. I am hopeful. I am a kick ass human being dealing with extraordinary circumstances and I can't do it alone...

Sunday, October 1, 2017

All About Me

I cut my finger tonight.
I was chopping potatoes for the vegetable soup I didn't want to make for dinner.
I didn't want to make anything for dinner.
I cut my finger tonight and nobody cared.
I cut my finger and I yelled, "god dammit".
None of the other people in my house noticed.
I left my potatoes on the counter, and ran upstairs to the band-aid bin.
I bandaged my finger by myself and nobody noticed.
I noticed, that nobody noticed.
I returned to my potatoes and exploded.
I yelled at all the boys in the room.
I asked them why they didn't ask me if I was okay.
I asked them why they didn't bother to see if I needed any help.
..
..
I continued to yell.
I continued to ask why no one cares for their caretaker.
I'm the one that makes sure everyone else is okay.
I put the band-aids on.
I give the hugs when someone is sad.
I listen when someone needs to talk.
I fix things.
I put things back together.
I tell everyone that everything is going to be okay.
I know what to do when someone needs something.
..
..
I'm yelling, most of the dogs are slowly walking away from the kitchen...the beagle stays, she's deaf.
I'm yelling, my thirteen year old is slowly walking out of the room...
I'm yelling, Dermot lies motionless in his reclined wheelchair...
I'm yelling, Ryan continues to keep his head down while drawing at the kitchen table...
I'm yelling, my husband yells back.
..
..
He tells me I swear so much now, that he can't tell when something is serious and when it's not.
He says if I reserved my swears for when it really counted, he'd know something was really wrong.
..
..
I feel like the boy who cried wolf.
I feel like every time I swear in anger, it is serious.
I feel like reserving my swears would make explosions like this even worse.
..
..
I feel my finger throbbing. Blood soaking thru the band-aid.
I feel my heart aching. Pain soaking thru my heart.
..
..
I cry.
I cry about so much and nothing at all.
I cry because I'm trapped.
I cry because I'm exhausted.
I cry because I'm scared.
I cry because I can't go on the Colorado Ranch retreat I read about in the Sunday paper, because leaving home for an entire week is a logistical impossibility.
I cry because I was stupid enough to go on Facebook and compare my life to others who are traveling across the world right now, and that is no longer a possibility in my life.
I cry because I think my husband is going to lecture me about Facebook again and all I really need him to do is lie and tell me everything is going to be okay.
..
..
It's all about me today, because most days it's not.











Thursday, August 24, 2017

This moment

The bag of urine sits at the end of his bed in the PICU. It's connected to the tube that flows up to the catheter inserted last night while I was at home and my husband was here.

The thin foam pads are installed on his forehead and cheeks to stop skin breakdown from the ill-fitted bi-pap mask. The fourth one we've tried in the three days we've been here.

The bi-pap is one reason why we are here in the PICU and not the regular ward, recovering. The two viruses and bacterial infection attacking his lungs is another.

Just three days ago we were baseline. Suctioning occasionally to clear the harmless mucus that he coughs up regularly. But Tuesday this sickness came on with a vengeance. O2 levels in the high seventies, wheezing, grunting because he couldn't get a full breath, fever. Eight hours was enough. We had reached our maximum output of homecare.

I called the ambulance mostly so I could get a break and have the professionals care for him until he recovered. I expected the same treatment we'd received years prior when he'd been in for pneumonia. This time was different. The Oxygen mask wasn't enough. The deep suction wasn't enough. The high-flow O2 contraption wasn't enough. The bi-pap is sustaining him, pushing his breath a little further in and a little further out. His body is tired. Tired of all the bullshit and the struggle. Everyone needs a little help sometimes, right?

The bi-pap gets us a free pass to the PICU along with his other "helper robots" named Hill-Rom The Vest and Hill-Rom Vital Cough, plus Covidien the Feeding Pump and Alaris PC the IV infuser.

I have imagined moments where Dermot would be here, all hooked up to tubes and needles and catheters and breathing machines, but I never really thought about what it would do to me as his mother. Would I collapse and fall to pieces? Would I be a bundle of anxiety picking off my fingernails one by one? Would I rise to the occasion and be bad ass? Or would I just keep swimming? Keep going, keep showing up for my boy, keep sleeping by his side and asking the nurses what they're doing and why, keep loving my other boys and keeping things "normal" for them?

Things happen fast when you have a boy with a fragile medical condition. You don't know what will happen or when things will get better. You just have to keep showing up. Every fucking day. Because there isn't anyone else who knows him better, or loves him as much or appreciates what his struggle has taught you about being present and feeling your pain as it comes.

We are in the Pediatric Intensive Care Unit. There's a cautiously optimistic doctor that thinks Dermot will recover to his baseline and there's a team of healthcare professionals sitting right outside in the hall to ensure that he comes home with us as soon as possible. I'm here three feet away listening to his breathing machine go in and out typing on my laptop so I can get this moment down on paper (so to speak). I don't ever want to forget this moment.

Friday, July 28, 2017

True Character

I parked the jeep and began to walk to the park building when I immediately saw the blue minivan sprawled across all three disability parking spots near the front of the building. I immediately walked to the van, as I have done many other times before, it was occupied by a mother perhaps a few years younger than myself and most likely her mother in the passenger seat.

I knocked on the driver’s side window, the driver startled and rolled down the window.

“This is a handicapped spot; do you have a permit to park her?” I asked.

“What?” the woman asked.

 “This parking is reserved for people with disabilities, do you have a permit?” I repeated, more forcefully this time.

“We’re just waiting for my kids.” She stated.

“You need to move, you don’t have a permit and you aren’t allowed to park here” I demanded.

“Why are you making such a big deal about this?”

“Because you don’t have a right to park here” I explained, again.

Silence

“Why do you care? “, she asked with irritation in her voice.

“Because I have a son with disabilities and I often park here when I’m dropping off my other son” I said.

“Is he here now?” she asked.

“No, but that doesn’t matter, you don’t have a right to be in this parking spot and you need to move.” I repeated my demand.

I walked into the building to check Ryan out…two minutes later I return to the parking lot, and the blue minivan is still there.

I walk over again.

“Why are you still here?”

“Why does it matter to you?”

“You need to move.”

The mother chimes in from the passenger side: “I’m sorry you are such an angry person..”

“I am not an angry person”, which was an absolute lie, “you just need to leave this parking space that you have no right to park in.”

Other moms are walking by, I wasn’t aware if any were paying attention to us or not, but Ryan was and as we walked back to my car, my nine year old suggested that I call the police.

I snapped a photo of her license plate as she drove away and decided that public shaming on Facebook was her punishment for the crime.

I drove home, hands shaking, heart racing.

Little did she know what she’d be up against that Wednesday afternoon.

I was smack dab in the middle of a crap week.

Six days earlier, Dermot had spent the day having seizure after seizure, getting pumped up again and again with emergency doses of Diastat and phenobarbital to stop his seizures.

Two days earlier Dermot was brought to the ER by ambulance to try to stop his reoccurring seizures that were too stubborn to respond to our household regimen of rescue medications. While my husband was spending the day in the ER with Dermot (it was his turn), I was preparing to have my cat of 16 years put down that afternoon because for the last two months she was blind and had peed everywhere on the basement carpet. I watched the boys say their final goodbyes, drove to the vet and sat with my feline friend and held her as she passed over the rainbow bridge.

On edge, grieving and on a vigilant watch for clusters of seizures, this was not the day for anyone in my path to park in the handicapped spot to add to their privileged life.

I will say I never dreamed the confrontation would go that far, I never imagined someone would argue with me about breaking the law and then refused to move.

The day after, I received a phone call from an old neighbor that I see out and about. She asked if I had a minute to talk. I lied and said yes. I had just turned off the carpet shampooing machine I had been using to try to get the cat urine smell out of my carpet. This isn’t a task I was planning to do that day, but I wasn’t about to leave the house while my nanny was counting and tracking another round of seizures Dermot was experiencing.

My friend informed me that she had seen my Facebook post and realized that she knew the woman who had “idled” in the handicapped spot the day before and wanted to work with both of us to reconcile.

She told me a few things about her friend, how her friend was put off by how aggressive I was and that she didn’t know that “idling” in those spots was illegal and that her mother (the one who called me the “angry person”) actually has experience working with individuals with special needs.

I stopped. No explanation was going to make it okay. I told my friend to tell this woman and if I saw her again, I would not “beat her up” or cause a scene, unless she was parked in those spots again. I told her that I would just ignore her. She again continued with her defense of the offender and I stopped the conversation abruptly and told her I was done talking to her. I hung up the phone.

I wonder if it occurred to my friend to say to the offender that she fucked up and shouldn’t have argued with a special needs mom.

When you argue about one issue with a special needs mom, you aren’t just arguing about the parking spot. You are arguing about the vast unfairness of her life compared to yours. The fact that it didn’t occur to her not to park in a spot she hadn’t earned through ten years of character building thru suffering amplifies everything.

All the pain and sadness of my journey, all the powerless moments I’ve endured, all the uncertainty that I carry with me each day, it shapes who I am, how I feel and how I interact with others. When I’m stretched too thin and worn too bare, that’s when I lose it.

I took a break from Facebook for a month, regretted my public shaming incident, cleaned up my account and am currently editing my friend list. Changing my priorities and valuing my true friendships. I’m sharing this with you to remind you:

Your true character is revealed by how you treat those who can do nothing for you.








Monday, February 27, 2017

Restroom

Anxiety attacks present themselves in different ways.

Mine appear to come out of nowhere. Seemingly I'm doing "fine" and then something happens and I'm running to the public restroom trying to hold myself together, while at my sons hockey game.

A few saturday nights ago, I was the first of the parents to arrive for the third game in four game tournament. The lights go out, the players are being introduced, and I'm alone on the bleachers. The opposing team's parents give me a puzzled glance and I shrug my shoulders.

The rest of the parents arrive early into the first period. I would say half were holding the drinks they brought along on the shuttle bus. No one was out of hand, but as  recovering alcoholic, I was quick to notice that a good majority had a subtle shift in their inhibitions. They quickly surrounded me apologetically on the bleachers. The volume was higher, the outrage for blown calls was greater, my heart started to beat louder.

To my left, was a mom who had been collecting information on me and my son, not the son that was there, but the son that was home, with my husband. The son that would not be able to thrive in a hockey tournament setting. The questions had been steady all weekend. Where's Dermot? Is it hard when you have to leave Dermot at home? How does Joe do with your son Dermot? Is he able to care for him by himself, or do you have a nurse to help? How does he communicate? How do you know what he needs?

And to my right was a self confessed tea totaller who was still working on her first beer. Her son seems to get called for too many penalties due to his size and she was getting sick of it.

The moms I usually sit with were in front of me and were unaware of my mounting anxiety. If it was just the team parents that were there I would have been fine. But three separate occasions from across the ice, we had all witnessed the coach of our team, scream at a few of our children. I mean turn red, then purple because he was so worked up. These twelve year old boys had been told "time and time again", not to do what they were doing and choose to do it anyway. One crossed the blue line at an inopportune time, the other didn't come out of the game when his replacement was ready to get on the ice. And the other, my kid, got a roughing penalty called on him while he was defending his goalie.

Shame came to these twelve year old boys. It was swift and loud and completely inappropriate. "That's the problem with youth sports these days" I could hear my husband's voice say in my head.

That was it, all I wanted to do was run to the bench and punch the coach in the throat. I stood up and ran to the bathroom. Locked in a stall and began to silently hyperventilate. I looked up trying to quell the tears for coming and destroying the white in my eyes. I couldn't do it tonight. This wasn't the time, I told myself. Keep it together, find a safer place.

I walked directly back to my spot and my purse was waiting for me, I grabbed it and ran up to the other side where a dad was up there with a few of the younger siblings. This dad was safe. This dad had been where I was. He wasn't afraid of crazy. I didn't need to talk, I just needed to be next to someone who's struggled too. I'm sure he was completing unaware of his calming presence for me, but I appreciated it.

This story doesn't seem like much on its own. but after I returned home from the three night tournament I was struck and how immensely sad I was. For a day I couldn't figure it out. I stood a few nights in a row crying to myself while watching Dermot sleep before I went off to bed at nearly one a.m.

This is what acute grief looks like:
It looks normal,
it looks like the perfect house
the perfect outfit
too many packages purchased in the wee hours of the night arriving via UPS
a stack of unread books on my night stand
ramen noodle cups in the pantry because I don't want to cook
hundreds of dollars worth of jewelry making materials and no creative juices flowing for over a year
explosive anger directed at my puppy for eating the pizza on the counter
the empty bag of peanut butter M&M's in the trash and the second empty bag in the floor of my car.
It looks like everything is going to be okay but it isn't.

My son is dying. Bit by miniscule bit, a piece of him disappears each day. His voice, his smile, his arm movements, his flexibility, his "normal looking" hands and feet. It crushes me. Most days I keep swimming along doing the day to day tasks, not thinking too much about the future. I can't even answer you when you ask if we have any spring break plans, But every so often, when I switch back and forth from "Typical" mom and "special needs" mom the transition throws me for a loop and I end up wondering why I just ate an entire 20 oz. bag of M&M's.

My family's journey is up and down, better and worse, yin and yang. I need to remember that. I need to have compassion for myself and my feelings. Let myself be sad, allow the happiness to take over every once and a while. Most of all, I need to remember to talk about it, so I don't end up in the restroom stall hyperventilating, alone.


Tuesday, November 29, 2016

Acceptance.

I was sitting in my weekly twelve step meeting. I was to speak about the holidays.

I read page 420 out loud to the group: "Perhaps the best thing of all for me is to remember that my serenity is inversely proportional to my expectations...."

I sighed deeply after my reading was over...

I want to be in this place. I want to have this level of acceptance. But I'm tired y'all.

It's been ten years of constant life adjustments and grief. The list is long.
There's no end in sight. Nor would I want there to be.
I experience a sense of loss each and every day and right now the scale is tipped too far one way.

I've been collecting people in my mind. People I know now. People I used to know. People I want to know. People who understand. People who left. People who show up. People I left.
I remember them all.

I need to stop collecting and start accepting.

In this ten year journey with my son Dermot I have worked tirelessly at making myself a better human. A kinder being. A fair parent. A good friend. A tolerable daughter. An accepting sister. A compassionate soul that runs toward pain, not away from it. I expect others to do the same, but that's not how it works. I know that in my head, but when I get to the low place where I start "collecting", my heart forgets that it doesn't work that way. People's lives go on....

The book keeps telling me that Acceptance is the key to my relationships. "I must keep my magnifying mind on my acceptance and off my expectations, for my serenity is directly proportional to my level of acceptance."

Accept I must.


Sunday, August 28, 2016

Sunday morning.

I just walked a mile home from our church that just doesn't do it for me anymore. Three priests in a year. The first one was why we went. he was transferred up to north Minneapolis because in the Catholic Church they move the guys around every ten years or so (no tasteless jokes please).

We all drove to church. Dermot was really congested, but we were confident that he'd cough it up by the time we got there. No cough. I went in and Joe stayed in the car with Dermot and the suction machine. Waiting for the cough.

The boys and I sat thru the first reading, no Joe and Dermot. Second reading, still no Joe and Dermot. I texted (yes, in church!). They were headed home. We'd walk home. Only a mile away, no big deal.

I sat thru the homily. I struggled to stay engaged in the wordy "story" that used to be my favorite part of church. Ryan on one side, whining and fidgeting. Owen on the other sitting dutifully.

In my head I wondered how it would affect the kids if we got up and left. What lesson would I be teaching? Because all I wanted to do was take off. I looked around at all the families. We hardly knew any of them. Small talk was all we gathered from our experiences lately. Then I drifted into more thoughts...

What do people see when they look at my family? Do they see me as a "saint"? Do they fear the rawness of our situation? Is it just easier to not get too close to us? Why don't we get invited places anymore? Is it just easier to admire my "strength" on Facebook? Is it difficult to be friends with us because we walk around with an open wound?  Do I push people away? Is it safer for me to retreat and not risk new situations? Are Ryan's recent behavioral outbursts just a manifestation of our family situation? Is he so starving for attention that he says things to me that would make any "regular" mom freak out and call a shrink?

Finally, the priest was done talking. Not sure what today's message was. I know my message. Keep on swimming. Keep living. Keep trying. Maybe this isn't the church for us anymore. Maybe there's another place for us. Maybe I'll ask my other catholic friends about their churches. Maybe I'll investigate them some Sunday morning without Dermot. To see if it's safe. To see if the people are kind. To see if we will be accepted. Truth is I'll never know until we try. But then we'll have to try and that takes energy.

As we walked home down a shady 51st street, I endured an onslaught of comments from Ryan. He told me how much he hated me. How mean I am to him, how badly he wants to live in a different family and how he never gets to have any fun. I agreed with him. I told him that life isn't fair. Ever. I told him that I loved him and that someday he will remember this morning and think to himself how wrong he was about me. Until then, I'm ready to be the reason for all his problems. Gladly. He's only eight and none of the bullshit that he deals with on a daily basis is his fault. I'm 45 and I know that none of the bullshit I deal with is anyone's fault. It's just bullshit.

Wednesday, July 6, 2016

July 18th.

July 18th is the date of Dermot's surgery.

His spine turns in the shape of an S.

80 degrees.

His right side of his internal organs are getting smushed.

Lungs, smushed.

Ribs, so close they almost touch.

Shoulder protrudes outward.

Head and neck automatically turns to the left.

The hump on his back grows more prominent each day.

The brace that he wears doesn't seem to fit him anymore.

This didn't happen overnight. it's been a long time coming. every six months the x-rays prove that as Dermot grows, the curve gets worse.

The brace doesn't fit him anymore.

We struggle with the decision of surgery.

Dermot is a fragile human being.

Respiratory distress is our first concern.

Pain is our second.

Length and ease of recovery is uncertain.

Dermot's spine isn't getting straighter.

Were are in the midst of multiple doctor's visits.

Dotting the i's and crossing the t's.

Doing everything we can to ensure that the surgery is a success.

Pulmonologist.

Orthopedic surgeon.

Another orthopedic surgeon.

Special needs pediatrician.

Another pediatrician.

Neurologist.

EKG, and some other heart test I can never remember the name to...

Now comes the waiting.

The anxiety attacks.

The doubt.

The prayers.

The therapy appointments.

The asking for help....