And he cried

It’s hard to know, with a non-verbal child. Sometimes I think I see a flicker of surprise or acknowledgement in his eye (he only uses one), but just sometimes. Being with him full time is a strange existence, it’s almost like I’m alone. I don’t know if he knows I’m his Mom. I don’t know what he’s thinking or even at what level he understands. I like to think he’s at the level of a 9 month old. Why? Because living like this would drive a normal intellect insane. I still change his diapers, for goodness sake. I hand feed him. He drinks a bottle. He’s 17. He has many seizures. He’s so big now, it’s turned very physical and I have fibromyalgia And I’m in my 50’s, an old lady by young people standards.

Hippotherapy
He has the longest eyelashes

His biological father is a drug addict and in prison at the moment, my husband has been his father. But as Chance gets older and needs to be shaved and has acne and grows more distant, my husband grows further away. Chance even has a moustache! He looks so much like his bio dad, who my husband saw once in court. It’s strange for everyone.

He usually seems pretty happy. He smiles every once in a while, but he’s a teenager and not always a happy camper. He hardly, if ever, crys anymore. During his first year, that’s all he did, so maybe he wore it all out. So he’s changed, because as a boy, he smiled all the time. I called him handsome Chansome. 

Italian fest
He’s wearing my hat

He goes to school, which he seems to like, also he likes riding the school bus. This is all speculation on my part. He seems the same. I worry, am I assigning him my own personality and voice as we do with pets? He’s a human being. A doctor said that to my Mom once, because she thought he was too much for me and isn’t close to him. She likes the girls best.

He rides a horse every week, a therapy called hippotherapy. He sits on the horse with a person on either side and a person leading the horse and an occupational therapist behind or working with him. He seems to like it or I like it for him, I don’t know. Believe it or not, insurance doesn’t pay for this, so I have to ask a charity for money, which lasts a few months. There is a LOT of paperwork involved with having a handicapped child. Doctors forms, social security, documents for court and child support, money to do a therapy that isn’t “approved” by the insurance industry. It’s a travesty. It’s called HippoTHERAPY and he works with an occupational therapist, who would be payed if we were inside!

Horse
Little Chance at Hippotherapy

But then I think about the terrible and wonderful day that he was thrown from a horse! Yes, terrible: I usually follow them around, but they were out in a field, I wasn’t allowed there. In the office, the walkie talkie crackled and said “rider down, rider down in the field” and people started running. I knew it was Chance, he was the only one out there. I ran, it seemed so far. And he was just laying there. I ran toward his head to stabilize his neck. I looked at him, upside down, he opened his eyes and looked into my eyes and started crying! He waited for me, to cry! I am special to him! We got an ambulance and he was checked out at the hospital and he was fine! A miracle. He has osteoporotic bones and has already had a fractured hip that required surgery and a full body cast for eight weeks. It was a nightmare, especially for Chance. He was thrown from a huge horse and had no injuries. Did he float down? No. Did someone catch him? No. The wonderful.

Horse
Hippotherapy

And he cried.

Advertisements

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

It’s NOT TOO EARLY TO THINK ABOUT HALLOWEEN!

Alarm bells are going off. It’s a bell only primary care providers (usually Moms) can hear. And that bell is screaming HALLOWEEN! Believe it or not, some people are already thinking about Christmas, may God bless them one and all!!! Ha!

Anywho, we have to start thinking about costumes. First I’ll ask the kids what they want to be and then I’ll decide what they are going to be. Should we do totally random or matchy-matchy? I have a boy and girl so we’ve done fireman and dog, Raggedy Ann and Andy (so cute) and others random, depending on my energy level that year.

Halloween
Potential costume

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”.

.

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.