THE CURE FOR THE QUARANTINE BLUES

Image is from the Prays to God Facebook Page

This quarantine thing sucks
I have the blues.
What?
You do too?
Compassion is the cure.

Cursing won't cure them.
Yelling won't cure them./.
Name-calling makes them worse
Compassion is the cure.

People are hurting.
Frustrated
Lonely.
Start a conversation.
Listen.
Learn.
Compassion is the cure.

.
The SC at Jaywood went out of her way to make sure I had all the foods that I love on my birthday.
I will never be able to repay her for all things she has done for me.
She does then anyway.
Compassion is the cure.

Happy Hour at NHC is still going strong.
During quarantine, if a resident can't make it to Happy Hour, the Booze Caboose will come to them.
I have seen the videos.
They made me smile.
Compassion is the cure.

To all the essential workers a million thank you's are not enough to show appreciation for your service.
Compassion is the cure.

To the Jaywood staff who is caring for me and keeping me safe.
You're doing an amazing job.
You've put your lives on hold.
Moved in.
Thank you.
That is the ultimate example of compassion.

Compassion. The perfect cure for your quarantine blues./.

ENTRY 3

MY HEART SKIPS A BEAT

Do you have a memory that you know you couldn't possibly remember because you were too little, but you swear that you do?  Or do you remember it simply because you've heard it so many times it's become an urban legend in your family? Here is mine
 
I was sitting in my highchair in the kitchen with my family. The pressure cooker was on the stove. The stopper .popped off. The pressure cooker exploded with a loud hissing sound. I am sure that I was startled, and looked around confused as my family ran out of the kitchen and out of the house leaving me in the kitchen thinking to myself, "Hey, what about me?" Don't worry my family came right back in when they realized they'd. forgotten me.

The Moro Reflex, also known as The Infant Startle Response disappears in babies by six months of age. If it does not it's an indication that a child has some kind of developmental delay. Characteristics of the response in infants are Jumping at loud noises and flailing their arms. It's an infant's fight/flight response. The baby's adrenaline kicks in.

In adults the response is characterized by jumping at sudden loud noises, people moving suddenly, flashes of light, tapping someone on the shoulder, or just looking at someone.

I have all these characteristics I hated flash photography. I would wait for that blinding flash of light. close my eyes and contort my face This made for some memorable photos I can assure you. I do much better now. With cell phones, the flash can be turned off and the photo still turns out great. I am vain. I actually like having my photo taken Who knew?

When I startle my heart jumps. The older I have gotten the more I have noticed this. It is an uncomfortable feeling.  A doctor put me on Valium when I was in high school. That made me so tired I could not function. I refused to take it after several days.

On the Fourth of July, my fight/flight response kicks in. I understand fireworks, but all I want to do is run away from the noise.  I can't believe I  admitted that to all of you.

I learned there was a legitimate name for my jumpiness in college when I took a child psych class. Yay. It had a name. It was a part of my CP. I was not just weird

If you see me startle just ignore it. Don't apologize You have not done anything. Please don't laugh or try to make me startle on purpose because you think it's funny. It's not. It just is  My startle response is one piece of the unique puzzle that is me.

ENTRY 2

WELCOME HOME

I came home around the time of my original due date. I am sure my mom dressed me in a pink girly outfit. I am positive of this because I remember all the smocked Polly Flinders dresses and black patent leather shoes. and little white socks with lace trim My name was monogrammed on my socks by my aunt.

 I came home to three older brothers. My maternal grandparents lived next door.  I was surrounded by love.

The first summer after I came home my family did not get much sleep. I was hot at night. I cried. By the next summer, we had central air conditioning in our house. Much to the relief of my family.

I imagine there were subtle signs of my CP early on. Maybe it was difficult to dress me or change my diaper. My spasticity makes my limbs tight,. My mom pushed any questions she may have had out of her mind.

But when I was eighteen months old, and not able to sit up on my own, not making an attempt to crawl or walk my family knew something was wrong. They took me to a doctor

I was a happy baby. Smiling and laughing. My mom told me that when the doctor examined me I did not react in any way. Not even when he ran his fingers down my side trying to tickle me. I have my own theories about why I did not respond.

A. The exam table was cold.
B. I sensed he was about to deliver news that would upset my parents,

"See how her mouth droops?  She's paralyzed on her left side. (I'm not)  She has cerebral palsy. There were other things discussed. The fact is that I would most likely be mentally challenged and not expect me to achieve very much. Did I mention that I knew the doctor was mean? He obviously failed bedside manner in med school.

My parents left the doctor's office devastated and confused, as to why I had not responded to the doctor in any way, but they were more confused about what the diagnosis of CP meant for me.

We were about to embark on a journey A rabbit hole of PT/OT and doctor's appointments. Leg braces, night braces, standing tables, parallel bars, walkers, and more.




.

ENTRY 1

DEDICATION 

My memoir is dedicated to my family. Thank you for your encouragement. and the sacrifices you've made on my behalf. I would not be the person I am today without your guidance and support.

FASTEN YOUR SEATBELTS...IT'S A GIRL

I was born in April. Two and a half months ahead of schedule. I wasn't supposed to make my appearance until July. I couldn't wait. I wanted to see the world. Okay, St Louis, was not the world, but It was a beginning. I had things to do. Or, and this is probably more accurate, God knew I would not enjoy celebrating my birthday in July. Nope. Fireworks on my birthday? The way I  startle? Not happening.

Cerebral palsy can occur shortly before, during the birthing process, or shortly after. The cerebral cortex of the brain is either damaged or underdeveloped. My mom had been bleeding for eight days before I was born. I can only imagine how frightened she must have been. Today she would have undergone a C-section. I would have been. rushed to the NICU.  Maybe I would not have been as severely disabled as I am if these options had been available. I will never know. My mom told me she was pretty sure the doctor suspected something was wrong with me, but he didn't want to tell her.

In 1957, April 19th fell on Good Friday. When I was little I would sometimes tell people I had two birthdays because well technically I do. Hey, I was a kid looking for more presents what can I say? You know you'd have done the same thing. I think I was born in the late afternoon around five o'clock. My mom said I looked like a tiny spider monkey, all arms and legs with a mass of black hair. She didn't get to hold me when I was born. I was placed in an incubator immediately  I was not weighed when I was born. Two days later, on Easter Sunday, I weighed in at a whopping two pounds nine ounces.

The windowed box would be my home for the next two and a half months. I saw the photos. I did not look happy in my temporary home.  I blame living in the windowed box for two and a half months for my fear of being alone For my first months of life no one held me. I was cared for by medical professionals. My parents could not touch me. They could only look at me through a window.  No wonder I have issues!!

And my mom? I can't begin to imagine how she must have felt being discharged from the hospital, but leaving me behind. She came to see me every day I imagined her looking at me through the window trying to connect with me in some way. As for me, I  believe I knew she was there. We'd meet soon. I would meet all of my family soon. I just had to be patient