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.


“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


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


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.


Orthopedic surgeon.

Another orthopedic surgeon.

Special needs pediatrician.

Another pediatrician.


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....

Wednesday, April 27, 2016


She's going to hate that I wrote about her. She's not going to want to talk about it.

The first time I saw her was six years ago at a Kindergarten class party. Hands on her hips, speaking uncomfortably loud to her son "Sumner Mark!".

Who's that? I wondered. Her son was friendly and talkative, he knew more about Star Wars than anyone I knew. I would find out later she knew just as much and wasn't afraid to share it.

She invited Owen over for his very first sleep over, I was worried, he was only five. She said not to worry and rattled off a detailed itinerary for the evening to sooth my insecurity. She has continued to go out of her way to sooth my insecurities. She was enthusiastic about Dermot. Few other friends took to him like she did. Her comfort around him made me at ease with her immediately. She was a safe person.

There's a certain, I don't give a hoot about what people think attitude about her. Yes, she drives the appropriate Edina car, has the appropriate Edina house and was a bit too involved in the PTO politics at the school from the get go. But that's only what you see if you don't know her.

She is kind, hilarious, unapologetic, loyal, impatient, brilliant, honest, and surprisingly vulnerable if she trusts you.

On the outside we have almost nothing in common. I love NASCAR, she loves Star Wars,  I run, she walks. I pray, she thinks. I practice yoga, she can barely touch her toes. Before I met her I was convinced that requirements for a lasting quality friendship would have to be, having the same interests. Clearly I was mistaken. While she is mocking me for having too many knick knacks in my home (she is especially fond of my collection of ceramic cats),
I am teasing her for her obsessive purchasing of designer handbags.

My panic has been at a low hum for the last few weeks. Every so often I realize that time is getting shorter. There's a date set, a plan in order and change is nearly upon us.

My friend is moving. 1000 miles away. This is the woman that I have spoken with nearly everyday for the last year and a half, not counting the days she's had off for various Star Wars conventions and Comic Book festivals. I'm not quite sure what will happen after she leaves, but I know my life will be significantly different.

No "I'm going to Sam's Club what do you need?" visits.

No impromptu visits to deliver my cookie container back to me.

No more annual neighborhood garage sale.

No dropping off my boys at her house to sleep over while I'm at the hospital with Dermot.

No showing up at Children's ER with my essentials and a hastily made ham sandwich with mayo instead of mustard.

No meeting me at Abbott to investigate the reason for my blown pupil and drive my mother back to Edina.

No hanging out at her house to watch her play with the crazy dog after her boys are asleep.

Okay, let's talk about the dog. My second best friend. My running buddy. My partner in fitness. No more running with the copper bullet tied to my waist. The dog's endearing excitement whenever I come to the door will be sorely missed. My own dogs have never been that excited about seeing me come home!

So I know that just because she is moving doesn't mean that we won't still be friends, but my person won't be close. My friend that comes over and grabs the suction wand without fear or regret and cares for my son without any reservations will be 1000 miles away. The one that walks in and tells me to get it together and encourages me to make tough decisions and loves me no matter what, will be 1000 miles away. That makes me panic quietly in my anxiety filled heart.

I am blessed to have met her. I am blessed to be able to be a true friend to her, just as she is to me.

There's no gossip or expectations. No judgments or put downs. No conditions or requirements.

Just friendship. A rare connection that has taught me to be a better person in every single area of my life.

Thank you Lisa. I will be your friend for as long as you'll have me.

Wednesday, January 13, 2016

How it is.

I hung up the phone and cried. Cried for the umpteenth time. I got what I wanted from the phone call, but I'm not happy.

She was telling me how it was. She was telling me what to do next. She was asking, yet again if I was using the respiratory vest, when he was well. I'm not an idiot. I know you were shaming me. I know you have guidelines and protocols to follow. As do I. He has mucus, that means antibiotics. Plus extra nebulizer treatments and Predisilone and suctioning and respiratory vest and frequent position changes. I know what to do. Believe me, I know what to do.

So my one comfort was taken away this morning. Dermot's pulminologist office has always been my reliable source for antibiotics when he is in respiratory distress. I call, they prescribe, we hopefully get better. But not today, today the young nurse tried to tell me, how it was going to be. She tried to tell me to go two more days before we intervened. She wasn't going to win this fight. Not today.

I told her that I've been dealing with his condition for over nine years and that he doesn't recover on his own. I reminded her that I wasn't looking for a prescription for morphine, just Augmentin. I told her that her suggestions alone weren't going to help Dermot. Because they never have. But I was crying while I told her. Dammit! I'm tired of crying to health professionals who try to tell me how it is. I know more than anyone else "how it is". I told the nurse that I just lost my one safe place to call when Dermot is ill. Never before had I had to fight for meds from them. Now that sense of safety is gone, probably left when Dermot's pulminologist left for his three week vacation...

Here's the kicker. I might be wrong. I don't know everything. His cough might be from our need to increase the dosage on his seizure meds that causes more secretions and more drowsiness. Perhaps we could decrease the dosage and his breathing would be better, but then would the cluster seizures would come back?

This is the spot that makes it almost to much to bear. When I have to decide what it is. When I have to decide which of Dermot's medical professionals I should call today to see if they can help.

The lung guy who's nurse decided to ruin my day? The brain guy who's goal is to stop Dermot's seizures? The gastro guy who's in charge of his feeding tube? The new pediatrician who he's seen a total of three times and who promised to take a lead role in his health care? The Bone guy who's main goal is to operate on Dermot to straighten his spine? So many doctors are responsible for bits and pieces, no one doctor sees ALL of Dermot. That's my job, of which I am grossly unqualified and underpaid for...

Tuesday, December 29, 2015

80 percent.

"How are you monitoring his seizures when you're head is in that book?" I asked my husband mid-morning a few days ago...

"Exactly the same way you do when you're Facebooking, online shopping and whatever else you do on your phone..." he snapped back, as if he was pulling his comeback out of his back pocket, almost relieved to have been able to finally use it.

Things are getting stressful. Things are progressing faster than we imagined.

Marriage is hard work. I know I've heard many people say that in the past, I've blown them of for using such a lame cliche over and over.

But, marriage is HARD WORK.

Staying married while having a child with severe and chronic health issues is nearly impossible work.

I remember when Dermot had just turned one. About the time I started reading a ton of books on parenting kids with special needs, I read a frightening statistic.

80% of all couples with special needs children divorce.

Holy shit. Those odds suck. They really suck.

Being a product of divorce myself I pledged to the best of my ability NOT to divorce, Now I'm reading this 80% statistic that blows me away. Granted I was only a few months into this special needs journey so there was no way to foresee what our lives would look like today.

But I can tell you that we are still married. It is not the marriage I dreamed of, It is not a story book tale of unconditional love, joy and commitment I expected it to be. But them again, whose marriage is?

My husband and I usually end up having heated "discussions" late at night after the boys are sleeping because there simply isn't a better time to "discuss" issues. Over the years these issues have changed dramatically. Gone are the days of whose turn is it to wake up with the baby or the talk about spending too much money on things we don't need. Now we weigh the pros and cons of allowing the orthopedic surgeon to insert metal rods into Dermot's spine to straighten the almost 70 degree curve, and if we decide to go through with it if we'll need to hire 24 hour nursing care for his recovery.

Last week we talked rather calmly about how tired we both were. How we feel as if we are on our own with our situation with Dermot. Most of our family are living their lives away from us, immersed in their own joys and struggles. We wondered to each other if we had communicated enough to our families how meaningful their time and visits are to us. We don't know.

I don't know.

I do know that in the last 13 years I have grown up in ways I could not have imagined. I'm still bossy, but now, I don't apologize for it. My intentions are clearer, I say what I mean. I get angry, but I know not to say too much until I think for a bit and almost always end up back in front of my husband explaining that I'm just so scared or worried or tired. And almost always, my husband receives me with acknowledging acceptance. Reminding me that we are in this together.

We are coming up on some hard decisions for Dermot's health that I don't want to make. We are living in our ninth year of having a helpless infant that needs 24-7 attention and care from at least one of us and we are worn out. We are sad, discouraged and resigned.

But we are still together.

Fuck that 80%...

Monday, October 12, 2015


It begins with an email. An announcement. A mother has lost her child. Another mother. A freak accident, no explanation that makes any sense to anyone.

The phone calls between friends begin. The tears. The "what should I do?" The "I can't imagine." The shock. The walking through the grocery store in a daze because you can't seem to comprehend why a little girl had to die.

I don't pretend to be best friend's with her mother, but I do call her a friend. When I think of her face, I see a smile and a warm greeting. She always walks toward me, not away. She doesn't deserve this heartbreak.

Her daughter was in my son's class two years in a row. I was disappointed when I heard she wouldn't be a classmate this year. She was the one I had picked to grow up with Ryan. I teased him occasionally to remember to be nice to her because you were going to take her to prom someday.

They live around the block from us. Her mom, dad and little brother. She had an infectious smile and a comfortable sense around adults. Her eyes as bright and smiley as her mother's, her golden disheveled curls revealed her inner tomboy and she could definitely hold her own while playing with the boys. She was adored by so many.

As I write, I have a feeling of disbelief. This feeling will continue for months to come. My heart sank and my tears are flowing. Knowing that her parents and brother's lives are forever altered breaks my heart. They will be followed by a dark cloud. Joy will be impossible for the coming days and months. Pain and grief will come into their lives uninvited. They will have to discover a way thru it all and carve out a new existence. A new way to live. Because they'll never go back to who they were before they lost her. You turn into someone else.

I hope that smile doesn't disappear completely. I hope that warm greeting can be returned by me and others in her life.

She will need everything we can give to her now. This grief is a terrifying thing. This pain is easier to look away from, but we need to go towards the pain, look it straight in the eye and be in it with her.

Bring them food, send them cards, attend memorials. but most of all keep showing up, remember her daughter, talk about her and miss her. Even after all the ceremonies are done and the food runs out and the relatives go home. Show up. Stop by. Share a hug. Anything to know she's not alone with her grief. That's what we can do.

We will miss you sweet Sophia.

Saturday, October 3, 2015

Home bound

I'm still here. Dermot is still here.

On September 9th, Dermot's leg was broken at school. We've been home bound ever since.

What does home bound mean? It means Dermot's in a rented reclining wheelchair that is next to impossible to put in my van. It is equipped with four flimsy nylon tie downs that make it "safe" to ride in a car. It also requires hastily purchased manual tie downs for $114 at the mobility van store.

So Dermot hasn't left the house since September 13th when we returned from Gillette Specialty Hospital. Unless you count the one time my husband took him for a walk around our neighborhood (otherwise known as "utopia") which he admits was excruciatingly difficult from a fitting in standpoint. I'm working up my courage to take him for a walk this afternoon. We'll see how that goes.

My fall as planned has not gone as planned at all. One nanny just delivered her first child (hooray for her, not hooray for the Sullivans), next nanny is only available on Thursdays, but not last Thursday. (Sorry!), Next one suffered a death in the family and needed to be with her own family. Then finally, the interview went great, the references all checked out, and the hopefully next nanny, declined my offer. So, my self-employed husband or my sister-in-law have been able to come home for 90 minutes a day for me to get my run in or my yoga class attended.

I have discovered a new grocery delivery service (thank god!). I have watched an obscene amount of television. I am thankful that I had never watched Parks and Recreation before, because it tends to be a bright spot in the early afternoon.

I have also been baking. Double chocolate chip muffins, lemon poppy seed muffins, my signature chocolate chip cookies, loaded oatmeal cookies, cake batter cookies, pumpkin cupcakes with cream cheese cupcakes, and my latest (in the oven as I write) pumpkin chocolate chip bread.

I have had a few visitors. Dermot's teacher comes for an hour each weekday, Owen and Ryan's piano teacher comes once a week. Dermot's therapists come to the house twice a week, and my parents are here now. But I'm always craving more connection. The fishbowl gets lonely when the only creatures around are a non-verbal nine year old boy, two very old beagles and a cat who insists on being pet as soon as the nebulizer machine comes on.

But I'm still home bound. Dermot's respiratory infection is almost gone, but I'm still in charge of the suction machine, diaper changes and nebulizer treatments. I'm still the person responsible.

We visit the surgeon on Monday morning for a progress report and x-ray, but then I have to wrap my head around letting him go back to school.

Will he be ok? Will he be excited or scared to go back? Will the teachers and staff know how to care for him safely? Will he be able to ride the bus in his normal wheelchair? Do I want him to?

Have I reconciled my feelings about what happened? I would hope so, but idle minds are the devil's playground. I've been idle...

Home bound. Still.

Friday, September 11, 2015


It reads:

"Good and gracious God, you have chosen the little ones,
the world's poor and lowly, to become rich in faith
and heirs to your Kingdom.

Open our eyes to see your presence everywhere and in all people
Open our ears to hear the challenge of your Word.
Loose our tongues to speak words of encouragement and strength
to those whose hearts are fearful
and sing the mighty wonders of your love."

I've been carrying around the program from last Sunday's church service in my purse because of this prayer. I looked at it while emptying out my purse last night.

Here's the deal. This is the part that scares me the most. The most difficult part.
Creating the new normal. In my journey with Dermot, I can't count on one hand the times I've hand to adjust to the new normal.
Usually just when I get used to the new normal, it changes.

Second week of school in full swing.

Yoga classes attended, paddle board purchased, running partner found, the new normal was looking awesome, until Wednesday.

The phone call from the school while I was on my run. It wasn't the first time I've received a call from the school nurse while I was running, just the latest.

I ran as fast as I could to the school to solve the situation which I was convinced was "no big deal". I arrived, calmly asked about Dermot's activities that day and lifted the blanket from his leg.

A flush of white came over me, Many "oh my God's came out in rapid succession and a few "Oh fuck's" followed.
Dermot's right thigh had a large swell and an unnecessary bend in it.


A call to 911 was made and my new normal was starting to form.

Another ambulance ride, another hospital, another doctor, another procedure.

Today I will learn to care for my son while his broken femur heals for the next couple of months.

I am grieving my free time lost, I am grieving my yoga classes gone, I am grieving my paddle board outings cancelled and I am grieving my new found freedom that I'd waited all summer to have.

I am sad.
I am angry.
I am fearful.
I am also filled with faith.
Filled with hope.


"One day some people came to the master and asked. 'How can you be happy in a world of such impermanence, where you cannot protect your loved ones from harm, illness and death?'
The master held up a glass and said, 'Someone gave me this glass, and I really like this glass.
It holds my water admirably and it glistens in the sunlight. I touch it and it rings!
One day the wind may blow it off the shelf, or my elbow may knock it from the table.
I know this glass in already broken, so I enjoy it incredibly.'

-Achaan Chah Subato

I will learn my new normal. and hope that it is only temporary.

Wednesday, September 9, 2015

Soft hands

I awoke with a right blown pupil. It was annoying as I was walking around the yard, taking the rented paddle board off the roof of the van and trying to read my facebook page on my phone. As my mom finished getting ready for the day, my step dad looked at my eyes and didn't seem particularly alarmed. Then my husband saw it and immediately said we needed to go get it checked out.

I'd like to think that I'm schooled in the ways of all things medical, but not for own health. Never had it occurred to me that I would experience any health issues. So a blown right pupil was something I'd need to google. Which in hindsight was a mistake, as I saw the words "stroke and aneurysm" in the same paragraph. With me now in tears, Joe insisted on bringing me to the hospital, which wasn't going to work because besides me and a couple of paid caretakers, Joe was the only other person with the know how to care for Dermot.

My mom reluctantly agreed to drive me, as she is not a fan of driving in general.
As we drove to the hospital, one thing stands out, her hand was warm. She wanted to hold my hand even though she was driving. First we drove to the Aitkin Hospital, 25 minutes away. She held my hand the whole time. I told her that I was scared; she told me I was going to be okay. I told her nothing could happen to me, I was responsible for too many people, and she said everything was going to be okay.

My mom and I talk often, mostly about our day to day activities and what her friend Shirley's daughter-in-law did to cure a case of the hiccups or how her friend Doris told everyone at her knitting club she hit a deer with her car. So, you could say we are close. But I've always had a sense of wanting for my mother. I've seemed to not quite get enough from her. This sense has haunted me since I was nine years old and she moved out and left my brother and me to live with my dad. We saw each other every Wednesday night and every other weekend, but I needed her more than that. I needed her more than she was able to give.

So growing up without a mother in the house is a task in itself. The powers that be saw to it that I experienced my first period on one of those fateful weekends I was with her. We shopped for my first training bras on a Wednesday night after dinner and before she returned me to her former home for the night. But I always wanted more from her. I hung out with my friend's and their mom's after school and longed for a sense of connection. Later I found it to be convenient that she wasn't in the house because it made it easier to forge her signature when I skipped school and need an excuse note for my homeroom teacher.

I was more comfortable hanging out with the guys. Most of my friends were dudes and I'd follow along with them at lunch, after work happy hours and driving them all home. I never knew what to talk about with the women. "Too fancy and dolled up for me," I'd say.

Now I've realized with a good amount of therapy and twenty+ years of time passing that a lot of my feelings of longing were a results of unmet and uncommunicated expectations and clearly not of my mom's doing. She was trying to forge out her own existence and identity. It's only after being a parent and a grown woman do I understand and have compassion for my mother and who she has become.

There are instances, when I get impatient with my mom. I wish she could figure out her iPhone settings herself, and I wish she knew how capable she was and didn't have to be afraid of trying new things. But, I'm grateful I have her in my life.

After an abbreviated visit to the small town hospital, my mom and I were instructed to drive immediately to Abbott Northwestern hospital. The ER would be ready to administer an MRI on my head and my neck. The small town doctor also reminded me not to eat or drink anything until after I had been seen in Minneapolis.

After two hours, full of conversation, me making frantic phone calls to my estranged family members, me seeking extra support from my friend with the power of google behind her, and several disagreements with Siri, we arrived at the hospital.

Weight, eyes, ears, hospital gown, blood pressure every fifteen minutes, neurological tests, several questions regarding my morning routine, an IV and a forty minute MRI later, we had results.

With mom and friend by my side, I wasn't going to have a stroke. I didn't have an aneurysm. I did however administer Atropine drops (for secretions) to Dermot in the middle of the night and somehow got some in my right eye causing my pupil to dilate.

So, here's what I learned from all of this.
I'm lucky. I have great family members and friends that ARE DOING THE BEST THEY CAN. They love me, and I love them.

I especially know that when my mom has told me over and over again that she'll help me whenever I need her to, I believe her now. And also, my mom has really soft hands.

Friday, August 21, 2015

58 lbs.

He weighs 58 pounds. I know you're asking because its quite shocking to watch me lift his large limp body out of his wheelchair. I know I'm small. But please don't ask me while I'm lifting him,

Dermot is heavy. We've got that covered. He's heavy for many reasons. His wheelchair alone weighs 87+ pounds, then factor in the TLSO brace, the fact that he can't assist me while I lift him and his 58 pounds, that equals heavy.

But for some reason when you ask me how much he weighs it makes me think you're going to talk about how you can't believe I can still lift him, or how you worry about when I won't be able to lift him anymore. "What will she do?" I imagine you saying to your confidant at the end of the night.

Is it pity? Beats me, but it feels like it.

How about "what can I do to help?" instead? Or perhaps taking action on your own. Yes he's heavy, but reminding me of it isn't helpful. It reminds me that it's hard.

I lift him every day, multiple times. I have taken steps to ensure I have a strong core. And when I say core, I mean it in a few ways.

Yoga, God, Friends. These things make my core stronger. I practice yoga to calm my mind and strengthen my muscles. I believe in God to strengthen my mind and calm my soul. I nurture my friendships to surround myself with people who support, understand and love me.

Dermot is heavy. I get that. I am strong. I get that.

Will you walk along the ramp with us instead of taking the stairs? Will you sit in the handicap seats with us, instead of in the bleachers? Will you push the wheelchair sometime to give me a break? Will you answer the stranger's kid asking the awkward question? Can you sit with Dermot and hold his hand sometimes so I can go play with my other boys? Can you do the hard stuff with me, instead of talking about it after I'm gone?

That's what I need. That's how you can help. Not for me to tell you how much he weighs and how many seizures he has every day. The answer to both questions equals a lot, and I'm afraid you'll use that information against me.

Tuesday, May 26, 2015

Alone at the party.

"Well that sucked" I said, after getting into the car after attending a graduation open house for a friend's son.

I only just realized how upset I was this morning, while I was pruning my crab-apple tree in the front yard while still in my pajamas.

So I'm trying to give people the benefit of the doubt, as I do in most cases, but c'mon.

We load up the family in the wheelchair van that is becoming increasingly irritating to me. Drive the two mile course to get to our friend's house, find a parking spot where we can unload appropriately. We've arrive. It's full, there's a food truck parked blocking the driveway (and any chance of an accessible entrance for Dermot's wheelchair), so we off-road it, as we so commonly do.

The guest of honor is on the driveway surrounded by his admirers, Parents not in site. We try to get Ryan to go and give him his card with a healthy sum of money in it, He's too shy. We find the basket to drop the cards after maneuvering thru the small well-dressed crowd on the rather slanted driveway. Joe decides we'll be more comfortable in the backyard, I agree, but getting back there is tough.

"Excuse us" Joe announces a few times. People move, but stay silent and study Dermot as his head is bobbing all directions due to the rough terrain. Okay, we've located the parents, who just happen to be the only adults we seem to know at the party. Five minutes in of standing alone as a family, the mother comes by to greet us, five minutes later she's moving on to her next task.

"Okay, I'd like to leave as soon as possible" I announce to my husband. "I get that", he relates back.

Ryan and Owen go to the neglected swing set and start swinging back and forth. Joe goes back to the inconvenient food truck to fill up on pizza. I am standing alone with Dermot in a crowd (which just happens to be the loneliest feeling ever) for what feels like an hour. The graduate's dad is close, we've only just texted a friendly banter last evening, so I'm sure he'll be by to greet us right after his current conversation. Nope. Walks the other direction. All I want to do, is leave. I don't make it a practice to put myself in vulnerable positions like this anymore. I've been here before. Hell I've written many posts about this very feeling before. I would like to leave. NOW.

Joe returns, we talk as a family when a mother comes and greets Dermot. Joe and I are skeptical and he mentions that her son has a chair that's similar to Dermot's. And he had a TLSO brace for his spine, and she misses when her son was this age because "you can still hold them when they're this small". Hmm. Okay... Joe asks where he is "oh, he's at home" she answers. She must have learned to keep him away from these situations as her son is 21 now. She points happily to her other two boys who are attending.

I wonder to myself if that's what we'll end up doing at some point. Leaving Dermot at home.

It would be a lot easier for us to leave him home. Then we wouldn't get stared at. We could drive the truck instead. we could walk thru the grass without a worry in the world. It would be easier to mingle, and for sure easier for people to introduce themselves to us. We could blend in. be like all the other people at the party.

But we aren't. We are a family who faces extraordinary challenges on a daily basis. Challenges that have made us into strong, compassionate, honest, kind people. The difference between us and them is that we wheel around our challenges, we wheel around our heartbreak, we wheel around our strength and compassion. You see our honesty sitting next to us. Feeding tube, spine brace, drool bib and all. They can hide their brokenness behind their perfect outfits and the expensive cars, we would never know about their imperfections unless they chose to share them. Lucky them. Or lucky us, I can't decide.

I do know that all of this takes courage and energy. Some days we have it and use it and it works out great, Some days we have it and use it and it works out NOT so great. The bummer is: we never know which way it will turn out until we try it. So we'll just keep trying it. Because sometimes it turns out great.