Normal Parenting?

I am not a normal parent.  

I wish I could live in the bubble I used to live in, where I would grow old with my husband, and watch my 3 sons all grow up and have lives here with us. No, I am not in that bubble anymore. I now know that dream never happened. It was the dream of a very young woman, who did not know any better. Instead, the actual events that young woman would have to endure; the death of her husbands and especially, her child; would have her dive into the deepest part of the universe to find him.

Rosary
Circle of Life
I am told I wrote this script before I arrived here. I have learned a great deal, since the bubble burst. I have learned there is no death and I have learned I must love everyone no matter what. I must love Marianne and be kind to her. I had to throw away this world, this bubble I was in, everything I ever learned in churches and schools and from society at large.   

Childhood, girlhood
Circle of Life
I had to relearn and reset my own perception of everything, and attempt to live in a state of spirit, not body, and newly perceive everything around me as temporary. 

I had to find out what was permanent and I learned the only thing permanent is Love, the kind that has no conditions placed on it. I had to embrace compassion, and apply that FIRST to Marianne, to be compassionate with HER, not to judge her or throw regrets at her.

Rosary bracelet
Circle of Life
I have come a long way since that innocent girl and I will continue to put one foot in front of the other. In the meantime,  to my sons who are still in this ‘place’, I am still damaged goods, always will be, and that’s okay. So if you see me frantic, or falling apart, or losing my bearings…just let me be. Don’t judge me or wish for a woman who has her shit together. I am living on fumes sometimes, and if I am not like other parents, just accept that I am not in the bubble anymore , an illusion I once had of certainty.

 Realize I still struggle to get through each day. I cannot put on a mask and pretend all the time anymore. I won’t deny myself the right to cry on occasion, or have meltdowns. I am doing the best I can with what is available to me now. As long as I am trying, be kind, and allow me to heal as I go. 

Thank you.

Marianne Brown

Photos: Mary Zabora

no fault of her own

So one day a baby is born, no fault of her own. Her parents are poor and can’t afford enough food, so the child becomes sick. But they have no health insurance, so she becomes sicker. The air has grown smoggy, the masks don’t help. Her innate abilities, physical and intellectual, begin to shrink.

So a toddler grows to be a little boy. His parents abuse drugs, so they can’t properly care for him. Nobody cares. There are no pre-school programs available, not for poor boys. He falls through the cracks until 1st grade, when he’s already six. 


So a child goes to school. There’s not enough food at home and her parents can’t afford school lunch, so she goes hungry. The child can’t concentrate and is labeled “difficult”. Nobody cares, her parents are too busy just surviving and her teachers, ignorant. Public schools are under-funded and failing.

So a little boy starts to grow big. There are no after school programs, so he wanders the streets and gets involved with drugs. There are no drug programs, so he gets addicted. Nobody cares. His life is over.

So a little girl begins to bloom, but she still has a child’s mind. She plays happily until one day, when Evil smells innocence and destroys her. There is no one to protect her, nobody to talk to. She spins out of control.

So one day a boy and girl meet…

This poem is dedicated to all the brave citizens who are standing up for human, animal and environmental rights. Mary Zabora “So this future will never be.”

Don’t judge me, I have a teenager.

My husband realized that our 13 year old daughter has not been using her toothbrush. We then came to the conclusion that she hasn’t been using her dermatologist ordered cream or antibiotic for acne. But she spent half an hour in the bathroom every night. What the hell was she doing in there? My husband deduced that she was playing on her phone for an extra half hour (and peeing). From the high level of sobs she emitted, we realized he was right. When asked why she wasn’t brushing her teeth all we could get out of her was, “I don’t know”.

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She constantly wears a jacket. It’s got blue stripes and is like a hoodie, but with a zipper up the front. It’s about two sizes too big for her, so hangs on her like a potato sack, down past her butt. She wears it to school, to bed and everything in between. I hate it. It is horrid. No matter how nice she’s dressed, she looks like a slob. But there are the excuses; “It’s still chilly at the bus stop”, “It’s cold in the classsrooms”, and the ever popular, “I need the pockets”.  She refuses to wear anything else. I used to think she might be embarrassed by her breasts or weight, so I let it go. Now I wonder if she’s been hiding things in those pockets.

The horrid jacket.

What happened to that adorable, bright, happy, loving toddler and little girl. The one who happily brushed her teeth. She had the most luxurious, long hair that sparkled in the sunshine. Now she wants it cut shorter and it’s greasy and hangs in her face all the time. She washes it every other night and a few hours later, it’s greasy again. I don’t remember being that greasy as a teen. Hey! Don’t judge me.

Looking cute with her brother and “Doggie”

More later.

Everything is…

My friend was writing on Facebook about her son’s condition and said, …”Everything is something until it is nothing.” Those words rang so true to me. It calls to mind the times that Chance was having a bad time with seizures. He is non-verbal, but every hiccup or head rub or cough or sneeze would attract my attention. Is he going to have another seizure? Will he stop breathing this time? Should I rush him to the hospital or call an ambulance? 

Special needs kids
Dr. Bones

With his sensory sensitivities I can’t vacuum when he’s home. But I’ve also got to scope out the atmosphere constantly. If it’s at all windy I’ll put his hood on. He hates wind. And those goddamn leaf blowers that I call pollution spreaders, Chance hates the noise and has a fit if they’re too close.

Special needs
Chance

My time when he’s home is not my own, it’s all about him. And when he’s at school I worry and wait for the phone to ring from the nurse. 

In her blog, DifferentDream.com, Sheri Dacon says this:

Fear is a big issue, the one that haunts me, the one that lies just below the outer crust of my fragile but mostly happy life. I don’t feel depressed. I am mostly in a good place. But the surface is so thin. I live in a constant state of hypervigilance. The tiniest quake could shatter the whole thing into oblivion.

That so well represents how I feel a lot of the time, except I AM depressed. And hypervigilant with a side of PTSD. Among other things. 😜

Hypervigilance
Little Chance

CPR on my Son – The Odessy

On February 10th I took my son to John’s Hopkins Children’s Center for a tonsillectomy. I’d like to share all my Facebook posts from this ordeal:

Here’s a prequel, while waiting for his surgery to start:

Mary Brown Pyle Zabora feeling concerned at Johns Hopkins Children’s Center.

10 February at 12:30 · Baltimore ·

Today’s the big day. Chance Campbell

#1 Day 2 – CPR

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Mary Brown Pyle Zabora added 2 new photos — at Johns Hopkins Children’s Center

11 February at 09:06 · Baltimore ·

Terrible morning. Chance Campbell had a bad seizure, he turned blue, his heart rate dropped and CPR was started. He’s OK for now but we definitely won’t be going home today.

#2 February 12th.

Poor Chance Campbell was struggling to breathe so much, he had to be intubated during the night. Please pray for him.

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 #3 Later on Feb. 12th

My son is becoming a mummy.

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#4 – Feb.13th

This is the view of Baltimore from Chance’s hospital room. He’s about the same, although the inflammation markers are really high on his blood work. Today they’re going to do a lumbar puncture and either a CT or MRI of his brain. He’s “resting” comfortably, as far as I can tell, because he is being kept unconscious.
Thank you for all the prayers and healing thoughts coming our way!

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#5 – February 14th

Chance is doing well today. He’s still intubated, but all his tests are coming up negative, even the brain CT and lumbar puncture. Today they’re going to start weaning him off some of the many meds he’s on and see how he does. 💔

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#6 – Feb. 15th – Day 5

Poor Chance Campbell. The doctors are trying to lower some of the meds to get him off the vent, so he was up most of the night, agitated and had 3 seizures. I’m exhausted.

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#7 – February 16th

Many thanks to Charles Gordon Pyle for spending the night with Chance Campbell and giving me a break. I really needed it. Also thanks to Charlie and my Mom, Christine Brown-Whelehan, for being witnesses for Chances baptism today.
Chance is still intubated, although they’ve been trying to get it out for 2 days. Maybe tomorrow? Also he developed a fever this evening. Sorry, wish I had better news. 😥😷

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Pause here while I wonder what happened to 3 days when I didn’t post. Hmmm???  He must have gotten off the vent at some point. A lot of this is a blur.

#8 – 2/19/2017

Day 9 update: Chance had a great day yesterday until the evening, when his breathing became very labored. He also developed a fever overnight. One step forward, two steps back. Hoping for a better Sunday.

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#9 – Day 11 – 2/21. I don’t know what happened on 2/20, no post.

 Wow, it’s already Tuesday! There’s no day or time in here, just moments. Chance had a great day yesterday. He got the big bi-pap mask off, which was shredding his nose, and went to a nasal cannula. He sat up in his chair for about an hour, too! Then he had an horrendous seizure early this morning. Two steps forward, one step back.

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#10 – Feb. 22nd

Many thanks to #ProjectLinus for supplying a soft and comfy blanket to my son at #JohnsHopkins Children’s Hospital.

#11 – 2/23

Good news! Chance is being moved out of ICU to a regular room today!

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I will miss all of the WONDERFUL nurses in PICU!!!

I ran into a few super heroes:

#12 February 25th – Day 15

Chance is on his way HOME! Hurrah!

This is the end of his hospitalization, but not the end to this ordeal. I brought home a very weak and very thin boy. He’s going to need a lot of support getting back to baseline.

Save

…on my child

A simple procedure, it’s almost routine. I worried beforehand; don’t forget the paperwork, make sure he’s bathed, let’s not be late, what to pack for an overnight stay?

He’s a big boy at 16, but not really that age. More like a 9 month old wearing big pants (and diapers). His favorite things: Sponge Bob Square Pants and a doll inherited from his little sister.

Special needs handicapped boy
Chance is special

It’s been an odessey, raising this boy. His bio “dad” left before he was born. And had another son 5 months after Chance was born. We’ve only seen him since in court. Last I heard, he’s in jail. But nevermind him, he’s not worth my time.
Diagnosed very young, so extreme was his global developmental delay. He’s got CP, they said. And we started physical therapy, which gave me hope, for a time. A couple years later I heard them say, He’s going to be substantially intellectually delayed, which devastated me.

The seizures started at 3 or 4, can’t remember anymore. Scary at first, an ambulance called. Eventually they became the new norm. As well as more doctors and lots of meds. Hospital stays, to no avail.

So exhausted, how did I do it? Working full time and suffering undiagnosed fibromyalgia. My days spent in pain, my nights drinking it away. So how did I do it? There was no other option. There was no other way.

A simple procedure to help out with severe sleep apnea, a tonsilectomy. We would stay overnight in the PICU, that’s short for pediatric intensive care unit. Just a precaution, they said, this procedure’s almost routine.

The morning after, he’s doing well. Until a bad seizure, the worst one ever. Before I knew it, 20 people filled the room. CPR on my child, CPR on my child. Then a tube down his throat, and an IV in his neck. CPR on my child. What would happen next?

Child
Hospital stay