Sunday, February 19, 2017

AJ unboxing toy, Grossery Gang, Rotten Cola, special needs acceptance, R...

This is another one of AJ's unboxing video. Marion really enjoyed this one.  She started with a serious face but by the end,  she was grabbing the packaging, smiling and laughing.  They are so cute together.  I love that they have this to do together!

AJ unboxing the fun, Grossery Gang, Horrid Hotdog Machine,

Tuesday, February 14, 2017

Monday, July 18, 2016

A Poem for my daughter living with Rett Syndrome

This is a poem in honor of my daughter, Marion, that is living with Rett Syndrome.

In Her Eyes She Speaks

Her secret is a mystery,
Unsolvable.
Somewhere in the depths of her soul 
She is hiding.
Silence cries locked inside,
The key is lost to the universe.
What do you say?
N o t h i n g
I look into my grandmother's eyes,
My eyes
Her eyes
The silence is deafening.
I look deep into her eyes
I see
pain, sorrow
deeper into her eyes
anger, frustration.
Still I look deeper into her eyes
happiness, joy.
There
in the depths of her soul
I find
Love.
That is where I stay.
That is where I will choose
to be.


Monday, June 6, 2016

The Same Little Girl: A fictional story based on my life

*A fictional short story based on my life.

“The Same Little Girl”

 “I would like to schedule Gracie for an EEG,” Dr. Moore said.
Sally and Jess exchanged looks.  They don’t know what an EEG is or what it does.
“A what?” Jess said with a puzzled look on his face.
 “An Electroencephalogram, or EEG records the electrical activity of the brain by picking up the electrical signals from the brain cells.  We are going to place little electrodes to Gracie’s head to find out how her brain works. The test will tell us if she is having seizures or not,” Dr. Moore said writing notes on her chart.  “Gracie will have to stay in the hospital for a few days,” Dr. Moore said. 
“Can we stay with her?” Sally said.  “Gracie has never been without me since she’s been born.”
“Yes, of course you can stay with her the whole time,” Dr. Moore said.
“Is it safe?” Jess asked. 
“Will it hurt?” Sally asked. 
“Yes, it is safe. We do it all the time.  There is no pain other than the uncomfortableness of the glue and electrodes on her head,” Dr. Moore said.  Dr. Moore is a short women, about fifty or so, with huge glasses that engulf her face and short black hair cut straight around her head at the ear. Dr. Moore asked Sally and Jess many questions about their family history, and the episode that they thought may be a seizure.
            ______________________________________________________     
Gracie had only started going to school a few month ago, after she turned three.  Gracie’s pediatrician had recommended a special school for her as Gracie had been falling behind developmentally.  Gracie did not talk much and when she did, there were only a handful of words she used.  There had even been talk of Gracie having Autism, but her parents weren’t convinced. It was a Tuesday when Sally went to Gracie’s school to pick her up; as she did every Tuesday.  But this time was different, this time Gracie’s teacher, Mrs. O’Neal, stopped Sally in the hallway.  Sally was not ready to hear the truth about Gracie but she would soon learn the truth is harder than the lie she told herself.
 “Does Gracie have seizures? I think Gracie had a seizure today.” Mrs. O’Neal said.
Sally couldn’t believe her ears. “What did she say?  A seizure? My daughter doesn’t have seizures.” Sally thought to herself.
“Excuse me, what did you say?” Sally said. 
“I wanted to know if Gracie had seizures,” Mrs. O’Neal said. 
 “No, Gracie has never had a seizure,” Sally said to Mrs. O’Neal, insulted at her even suggesting Gracie had seizures. Sally had always wanted to be a mom, and when she had Gracie she knew she would stay home and take care of her. Sally was a planner and there was no room in her plan for seizures.   “I am running late for an appointment.  Can we talk about this another time?” Sally said as she grabbed Gracie’s hand and walked down the hallway.
__________________________________________________         
 “This is going to be your home for the next week,” the nurse said. 
Sally thought they were only going to be at the hospital for a few days. 
“A week,” Sally said. 
“Well, it could be shorter, we’ll see,” The nurse said.
 The room looked like any other hospital room.  In the center of the room was a big picture window with a royal blue couch that rolled out into a bed; in front of it to the right was a hospital bed with white sheets.  Behind the bed were wires, hoses, and machines. To the left was a TV mounted to the wall. Underneath it was a built in closet, and to the left of that was the private bathroom.  In the left hand corner of the room was a wooden rocking chair worn out from moms rocking their child to sleep.  On the ceiling was a huge tinted dome, Sally could still see the camera inside of it. The nurse caught Sally puzzling at the camera.
“That’s the camera. It is on 24/7, so if you need to change, go into the bathroom because it cannot see you in there,” the nurse said as she pointed to the bathroom.   Gracie went into the bathroom and changed into a hospital gown. It was yellow with tiny tigers all over it.  Gracie sat on the hospital bed, playing with her toys. 
 “All looks good here,” the nurse said as she took Gracie’s vital signs. Then she left the room.
A technician came into the room to put the EEG leads on Gracie.  Gracie laid still while on the bed as the technician stood at the top of her bed; he measured and mapped out her head so that he knew where to place the electrodes. The technician put some type of sticky glue on the electrodes on Gracie’s head.  It smelled like burnt rubber.  Gracie squirmed a little bit, but Sally put her favorite movie on the iPad and let her watch it while the technician placed leads on her head. When the technician was done, he wrapped her little head in bandages around her chin; all anyone could see was her eyes, nose, mouth and chubby cheeks. 
“Here is the red button; you will have to push this every time Sally has an episode,” the technician said. The button is plugged into the wall and clipped to the side of Gracie’s bed.  “One more thing,” the technician said. “It is very important that you do not leave her alone.  If you need to go to the bathroom or get something to eat, you must call a nurse.” 
“Gracie wouldn’t let me leave even the room even if I wanted to,” Sally said as the technician left the room.
                        ____________________________________________
The last day of a person’s normal life does not announce itself;  to those living it, it is just another typical day.  
“What smells so good?” Jess said, as he walked into the kitchen and placed his black leather brief case on the floor.  Jess was tall with sandy brown hair in a military cut. Jess’ broad shoulders filling out the navy blue dress shirt, he stood loose his red tie.
 “I am making lasagna, your favorite” she said as she pulled the hot pan out of the stove and placed it on the counter Jess had just cleaned. 
“I can see that. I think there is more on the counter than there is in the pan,” he said laughing he grabbed the kitchen cleaner and a towel; he wiped the counter.
“You look as beautiful as you did the day I meet you, ten years ago,” Jess said as he put down the cleaner and placed his hands around her waist.
 “The moment I say you in my senior English class I knew I was going to marry you,” Sally said as she looked up at Jess and kissed him passionately. 
All of a sudden they heard a loud thud and turned towards the sound.  It was Gracie.  Her head had hit the wall and she was lying on the carpet, her hands and feet were twitching. 
“Gracie what happened?” Sally said as she ran to Gracie.  There was no response.  Her eyes seemed to look past her mother’s eyes as if no one was there. Jess stood there watching in horror.
“Gracie,” she said as she stroked Gracie’s head, “Gracie!” 
Just then Gracie turned her head towards Sally, “Mommy,” she said. 
“Baby, what happened?” Sally said. 
“My head hurts,” Gracie said as she sat up.  Sally scooped Gracie into her arms.  Jess softly kissed Gracie on the forehead followed by his wife.  Jess put his arms around the both of them and held them as Gracie fell asleep. After that day, normal took on a whole new meaning for Sally, Jess and Gracie.
            _______________________________________________________
 Now, Gracie lay asleep on her hospital bed as Sally sat looking out the window into the parking lot where people were walking, driving and parking.  Sally felt like she was a prisoner stuck in a tiny room for days 
At least prisoners get to go out to the yard once a day for fresh air and sunlight.” she thought to herself.  “Not me I was stuck in this tiny room, smaller than a bedroom for day or weeks maybe.”  The smell of the cold sterile hospital room had become familiar to her.
___________________________________________________ 
Sally was watching Gracie. Gracie was smiling and playing with her dolls, when silence suddendly filled the air.  Gracie stopped playing.  Her body fell backward as if she was fainting, but her hazel eyes were open.  Sally ran to Gracie and looked into her eyes.  They were glazing over and her pupils were dilated.  Sally felt Gracie’s body stiffening, shaking, trembling, and thrashing all around.  Gracie’s mouth was half open.  Sally could see her tongue shaking.  She was drooling onto the hospital bed. Sally’s heart raced.   Her anxiety rose.  Her eyes started to tear. In these few moments time slowed down seconds felt like minutes.  A voice came over the overhead speaker, as if God were speaking to Sally. 
“Can you please hit the red button,” the technician said from the overhead speaker. 
She searched for the red button clipped on the sheets of the hospital bed.  Sally grabbed it hitting it so hard she thought it would break.  A loud beeping sound and flashing lights came from the door of the hospital room.  Nurses and doctors came running in and pushed Sally aside. 
“What was she doing when it happened?” One nurse yelled at Sally.
 “Are these the episodes you were talking about?”  Another nurse yelled at Sally.
All Sally could do was nodd her head. “I didn’t do anything,” she thought to herself, “they told me to push the button.” She opened her mouth but no words came out. The tears were pouring down her cheek, there was no consoling her.   Sally just kept her eyes on Gracie.
Gracie’s body began to relax and once again, Sally saw the sparkle in her eyes. The nurses moved, allowing Sally to walk over by Gracie’s bed.  Sally gently stroked Grace’s hair, kissing her on the forehead and whispered into her ear, “It’s going to be okay.”  But secretly, Sally was asking herself, “Why her daughter. Why Gracie?” Gracie closed her eyes and fell asleep. 
            Later that day the nurse came into Gracie’s hospital room.
“Would you two come with me, Dr. Moore would like talk to you,” the nurse said.
“Don’t worry about Gracie, a hospital volunteer will come to sit and play with her.”
 The nurse led Sally and Jess down the hospital hallway to a door with a sign that read, “Family Consultation Room.”  When Jess opened the door he noticed Dr. Moore was already in the room, sitting at a big round oak table.  Sally and Jess walked in and sat across the table from Dr. Moore. 
“We were able to catch Gracie’s seizure on video,” Dr. Moore said. “ And It is just as I suspected, Gracie has epilepsy.”  
Sally squeezed Jess’s hand as she heard the word epilepsy; her worse fears were confirmed.  “There’s more” Dr. Moore said, “We know what’s causing the seizures. Gracie also has Rett syndrome.”
Sally and Jess were in shock as Dr. Moore explained Rett syndrome.  She told them it was a chromosome abnormality and would affect every part of her body from speech to motor function. 
“Gracie will slowly get worse and worse,” Dr. Moore said. “Most of the girls end up in wheelchairs.”
Sally felt nauseous. Jess’s mind filled with questions.
 “What’s her life expectancy?” Jess said. 
“There is no cure at this time.  You need to prepare for the worst, most girls do not make it past their twentieth birthdays,” Dr. Moore said.
Sally just replayed the words over and over again in her head, “prepare for the worst.” 
Jess listened to Dr. Moore as she rambled off numbers, percentages, and talked about anti-seizure medication that Gracie would need.   Jess spoke her scientific language, but Sally just sat there nodding, not saying a word.  
“Do you have any questions?” Dr. Moore asked Sally.  Sally went blank; she could not think of anything.  She was in shock as she shook her head side to side. 
“When can we take her home?” Jess said. 
“We will take the leads off today and start her on the first dose of anti-seizure medicine. If there are no side affects you can take her home tomorrow,” Dr. Moore said as she stood up to leave.
Jess stood up, followed by Sally. Jess placed his hand round Sally’s waist as if he were holding her up.  Jess shook Dr. Moore’s hand. Mindlessly, Sally shook Dr. Moore’s hand.  Sally was in shock, but she couldn’t stay there for long.  They had to tell Gracie.   
_______________________________________________________________
Jess scooped Gracie into his arms, careful not to pull on any of her cords. 
“How’s my little princess? Jess said.
            “My head hurt,” Gracie said as she scratched her head.
Jess pulled Gracie into his chest and took a lollypop from his pocket.  “Here you go baby girl, this will help,” Jess said. 
“Thanks, daddy,” Gracie said.
“Gracie, we have something to tell you,” Sally said.  But when Sally looked into Gracie’s eyes; she saw her own eyes staring back at her.  Sally saw all the things her daughter would never be: a ballerina, a wife, a mother. Sally ran out of the room crying with her hands covering her face. 
Jess looked down at this daughter and placed her on the bed.  “Gracie, I will be right back,” Jess said and he left.         
            Jess found Sally outside the door crying.  Sally looked deep into Jess’ blue eyes and wondered where they would go from here. 
            “I can’t do this, I am not strong enough,” Sally said. “She’s only three years old.”
“Yes, but she is a fighter and she will fight this,” Jess said.  “We will fight this.” 
Sally just stood there with tears rolling down her cheek. Jess looked at her face and wiped the tears from her face.  She thought about how her daughter soon wouldn’t be able to hold a doll, play a game of kick ball, or even ride a bike.  Sally thought about how one day she would have to bury her daughter. Jess looked at Sally as if he knew what she was thinking.  He pulled her into his chest and squeezed her tight. Sally sobbed uncontrollably into his shirt.  
Jess grabbed Sally by the arms and shook her.  “I don’t care what the doctors say,” Jess said. “She is the same little girl we brought into the hospital. This diagnosis doesn’t change anything.”  Sally stopped crying.

Jess was right, but Jess was wrong too.  Gracie’s diagnosis changed everything.  And together they walked back into Gracie’s room.