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.