No “button” for my son!

I have a son named Chance. He is 17 years old, going into his senior year of high school. He’s handsome, funny, quirky, brave, strong, sometimes grumpy. Hey, nobody’s perfect! LOL!

I love him. He’s still like a 9 month old baby intellectually and physically. He wears diapers, doesn’t talk or walk unassisted and has daily seizures. It’s God-awful. It’s ruined my life. I was just barely making it, widowed, with one teenage child and then I was pregnant. And then the father ran away. And I have fibromyalgia. And I work full time. And I have a house and bills to take care of. And the baby’s not well. There’s something wrong and the doctors won’t believe me. Tip.

He was eventually, after many time consuming and physically punishing doctors appointments, diagnosed with cerebral palsy and epilepsy. At one point they said he was virtually blind. Tip. As he got older, he wasn’t gaining weight. He wouldn’t breastfeed and then never learned how to chew, or talk, walk, potty train… He looked like a skeleton. We’re fortunate to live near a big city with lots of the best medical care in the country. Baltimore, Kennedy Krieger Institute, Johns Hopkins Hospital. We started going to a feeding clinic at KK and they suggested a feeding tube, although they have a cutesy name for it, button. It’s a surgical procedure where his intestine is hooked up to the outside. There are many complications possible. It would make things easier for me and them, but that doesn’t mean it’s best for Chance.

They gave him a goal weight and I stuffed him full of food and formula so we could avoid “the button”. And we did hit! He hit the goal weight, so for now he’s safe. When I’m not around anymore (something I worry about constantly), he will probably end up with one, but His beautiful bod is still whole.

Special needs mom child
Chance at Central Special School

Update: In May of 2018 Chance developed aspiration pneumonia. In order to avoid it again, he was deathly ill, I had a stomach tube placed. ๐Ÿ˜ฒ


Faking Normal – the list

This may turn into a long list. I’m going to think of things that fibromyalgia took away from me, even though I didn’t know I had it. Back then, and for 25 years, I just wondered why I couldn’t “keep up” with my co-workers and friends and family. I refused to get a second job, even though most x-ray technologists had 2-3 jobs. I had a hard enough time just getting through a regular work week. I didn’t understand how some people could actually enjoy working, when all I wanted to do was go home and rest.

Me, left, and my older sister

So I’ll add to this as I think of more things, because there’s a lot. If you can add to this list, let me know in the comments and I’ll add them. Fibromyalgia is pain, but it’s also exhaustion, depression and muddled thinking, dread. Someone came up with the “Spoon theory”. People with chronic pain conditions have a certain amount of energy, or spoons, depending on the day. If you run out of spoons, you’re done for the day. This really helps my family if I say, “I’m low on spoons today” or “I’ve got plenty of spoons!”.

I need more spoons!

Fibromyalgia has taken my:

1. Career

2. Child (my oldest son went to live with my sister b/c I couldn’t handle him and my job and my house, which he seemed to want to destroy, and a new baby).

3. Sobriety, I drank whiskey for many years when I couldn’t take the pain anymore, until Lyrica.

4. Youth. I remember being 25, at work as a landscaper, and I had to sit and cry because I couldn’t keep up with my co-workers, all older than me.

5. Sex life. Every touch hurts.

6. Beautiful fingernails

7. Ability to enjoy a bath or long, hot shower. I dread taking a shower.

Because of fibromyalgia I can’t:

1. Garden

2. Drive over 5 hours.

3. Carry a child, my children. (A baby stroller was my best friend).

4. Clean my house well.

5. Cook

6. Travel

7. Shop

8. Work

9. Walk my dog

10. Work out

11. Breastfeed (hurt too much)

“Oh the grieving is huge. The lost opportunities and what could have been, the grief for what never was. The grief for what was. Only those who’ve experienced this will understand too, so it can also be very isolating. Xox” Chelli Sherwin

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.

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.”

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 ยท Baltimore ยท

Today’s the big day. Chance Campbell

#1 Day 2 – CPR

Mary Brown Pyle Zabora added 2 new photos โ€” at Johns Hopkins Children’s Center

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.

#3 Later on Feb. 12th

My son is becoming a mummy.

#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!

#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. โค๐Ÿ’”โค

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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. ๐Ÿ˜ฅ๐Ÿ˜ท

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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.

A Terrifying Journey

Ok, so I’ve been living at Johns Hopkins hospital for a week with my son, Chance. I only expected us to be here overnight. Ha! I should have known better.

Johns Hopkins
Before surgery

Chance obviously has some challenges in life. He has cerebral palsy and epilepsy as well as intellectual disabilities. I just tell everyone that he’s like a 9 month old baby, physically and mentally. Recently he was  also diagnosed with severe sleep apnea and we thought it might help to remove his tonsils. So, we came in on a Friday and the surgery went well. He was scheduled to stay overnight in the pediatric intensive care unit (PICU).

PICU hospital stay
View from our window in PICU

Things went well the first night, but on Saturday morning he had a terrible seizure and Coded! For the uninitiated, that means his heart stopped and CPR was performed. I never thought I’d have to see CPR performed on one of my children.

CPR in action

Along with CPR comes a host of new fun things my boy has to endure, like being on a ventilator and having a needle jammed into his leg bone for quick IV access. That needle was quickly taken out after a central line was placed in his neck.

Johns Hopkins
Central line delivering meds

The central line was crucial for delivering the many meds to keep him unconscious and treat him with antibiotics, in case of infection.

Johns Hopkins hospital
Lots of meds for a little body

He was also given a urinary catheter (poor guy) and hooked up continuously to an EKG machine to check for “sub-clinical” seizures. Parents can learn lots of fancy medical terms they don’t want to know when their child is critically ill.

Johns Hopkins hospital
My child the mummy

As of this writing, it is Saturday again, one week since he coded. He was finally weened from the vent yesterday and is now on a bi-pap machine to support his breathing. I was so happy to have that tube removed, but now the real work starts for me. He’s awake and very unhappy with all of this, scooting down in the bed, throwing his arms around, trying to shake the bi-pap mask off. Also, all the antibiotics have given him terrible diarrhea, so every time he coughs there’s a mess to clean up. Fun times. 

Sick child
A dragon from Daddy

I’ll update some more later, when he’s off breathing assistance. Although that will probably take a few days as they step him down from bi-pap to c-pap to nasal cannula. See, those “fancy” medical terms again!!!

Peace. โœŒ