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. 😲



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.

Potential costume

Babye Taney

I’m kind of neutral on the whole statue removal thing. That said, I also realize they are just outward projections of our inner strife. This one involving the whites who voted for Trump and the whites who didn’t. You thought this was about slavery or black vs. white or history? Sorry.

Civil rights
Taney statue Annapolis
I photographed the above statue in Annapolis a few years ago, never dreaming there would ever be controversy surrounding it. Also not knowing it had a twin up the road in Baltimore. I must applaud Mayor Pugh for having all 4 civil war statues removed overnight. This wasn’t really about the statues, it was about keeping the city and citizens safe, after what happened in Charlottesville. The mayor didn’t want any more protesting here or having riots again as with the BLM movement. Governor Hogan had the Taney statue in Annapolis removed the following night. 

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

New Dog Breed

Here’s an exciting announcement from the American Kennel Associated:

“We’ve discovered a new dog breed: Spotty-Bottomed Terrier”!

Dog breed
AKA Daisy
Oh and, #NotMyPresident #fairness #notherpresident @RealDonaldTrump