…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
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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.

Chance
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. ✌

The Narcissistic Sibling

I realized recently that my older sister has a narcissistic type of personality disorder. I’m not a psychologist or psychiatrist, but I’m reasonably intelligent and have a medical background, a good friend with a narcissistic mother and have read about it a lot.

The first really odd thing I remember happening is when she left me high and dry as my ride to our cousin’s wedding in Pennsylvania. 

Sister love
Not my cousin’s wedding, since I’m actually there, far left.

Right before the wedding, I happened to be in Ocean City, MD with a couple of friends, and she was at college in Salisbury, MD.  We arranged beforehand to meet at her dorm room so we could drive up together. This is in 1986, no cell phones, so this is common practice. My friends dropped me off at the campus and I walked to her dorm room and she was?…nowhere to be found. Gone. Absconded. I’m very conscientious about time, so am never late, but she left me there and didn’t care what happened. For once in her life, she left early.

I had no phone number for my aunt or cousin and my mother was already there. I didn’t know where to go. And I didn’t have the number for my friends’ condo in OC, but even if I had, they would have been at the beach, not waiting for me to call for yet another ride. 

This was traumatic, I’d been literally abandoned. I didn’t have much money, I was a teenager. I ended up going out to the main road and hitchhiking back to Ocean City, where I eventually found my friends and wasn’t murdered by the guy who picked me up, thank God!

The worst part was that, #1 I missed the wedding. #2 She blamed Me. I don’t know what she said, probably that I didn’t show up at the dorm? Since she was there and I wasn’t, they took her side. I was the black sheep. She’s a really good liar. My mother and other sisters wouldn’t believe me. I missed a wedding which I was really looking forward to. My cousin was, I’m sure, very hurt. 

And since, everyone’s looked at me a little funny, especially my aunt and cousin. They still do, 30+ years later.

Protest
#NoH8Campaign

This is how narcissistics manipulate others so they can ruin lives. Here’s something from a blog I found really interesting and helpful, because the betrayal from the other “normal” relatives is very devastating. The second one really reminds me of my mother.

Why Do Family Members Align With the Narcissist?

-The narcissist appears to have power. They call the shots, command attention, control decision making and extract compliance from others. They are defective ‘alpha dogs’. Those who go along with this power grab hope to share in the power – or at least not be targeted for abuse.

-Fear of facing ‘the awful truth’ about family or oneself, and having to do something about it, leads to minimizing or denying the existence of the problem. Faced with the potential of being attacked and rejected, and the general upheaval that can stem from taking responsibility for admitting the truth, many narcissist supporters will choose to ‘look the other way’, at tremendous cost to themselves and the family.