Twelve Years Later and it Still Hurts

Twelve years ago this week Jason was admitted to the hospital for the last time. He developed aspirating double pneumonia and when we arrived at the hospital, he was on a respirator in the Intensive Care Unit.

Obviously this was not the first time he was admitted to the hospital. However, this time something felt different. Seeing him on a respirator for the first time since birth shocked me. Is this a sign I need to pay attention to? He started his life on a respirator; will he end it the same way?

I had a nagging deep gut feeling his body has been deteriorating in the past few years. I began to prepare myself for the inevitable. Many times through the years I would ask his doctor what was his life expectancy, but never expected a response and never got one.

I went home for Thanksgiving that year but quickly returned to sit by his side. His lung capacity was weak and weaning him off the respirator was a concern. His bronchial passage was fragile and they were not sure they would be able to intubate him if it became necessary. The doctor highly suggested to place a tracheostomy so they could reinsert the respirator through the tracheostomy if necessary. The respirator was removed and he was breathing on his own.

Jason was discharged from the Intensive Care Unit on December 17th. He was not able to return to the home he lived in for the past twenty years because they didn’t have the ability to care for him with a tracheostomy. He was waiting a transfer to a new home.

He was considered stable and was to be transferred in a few days, so I decided to return to work since I was on emergency leave for over a month.

On December 22, 2006 I received a call at work. The doctor on call told me Jason stopped breathing and after several attempts to resuscitate him, he was pronounced dead. My initial reaction was shock. I believed he was in stable condition, I then was angry at him. Why did he die alone, without me to hold his hand.

After his funeral I came to terms with his death. Jason and I had a special relationship. I understood his needs. I realized his body lost it strength, his emotional and physical pain became to unbearable and he no longer was able to hide behind his smile. It was his choice. For the first time in his life he had control and he chose to leave the pain behind and find a better life in heaven. He is my guardian angel.

FACEBOOK LIVE SERIES

This week I began Chapter one of my weekly FB Live series. I will be sharing details of my life with my son Jason. Jason was born in 1979 as a twin, two months premature. He developed a brain hemorrhage one week after birth which left him with spastic quadriplegic cerebral palsy. The FB Live series will continue weekly on Thursdays at 2:00 pm EST.

This weeks video is posted here. I would be ever grateful if you would share my video so that it can reach those who need to hear my story. I lived through many years of fear and frustrations of the unknown. If I can reach parents today who are caring for a special needs child, just maybe I will provide some clarity along with my years of wisdom and experience.

Hugs

Jude

Poem

Today is the 11th anniversary of my son Jason’s death. I am sharing a poem I wrote remembering and honoring his life

Jason S. Quate

09/08/1978 – 12/22/2006

A child is born

so tiny and frail,

his little body

is no bigger than a snail.

He is born premature,

needing a tube to breath;

because his lungs are

unable to be free.

Because of his strong fragility,

a blood vessel burst,

his future is now in the hands

of an uncontrolled curse.

This little baby grew to become

a young boy with many frailties

and It soon became quite apparent

he will live his life with disabilities.

This did not stop him from becoming

a young man with a beautiful smile

that could light up a room

you can see for many miles

This young boy grew to manhood

full of spirit and hope.

The many people who were honored to know him,

learned a valuable lesson in how to cope.

One day this gentle soul of a young man

whose smile can no longer hide his pain,

understanding his life will soon end

because God has for him a new plan.

His days on earth are over but do not be upset,

God has taken him under his wing

teaching him a rewarding job that will be his next quest.

He now serves as a guardian angel

who watches over his loving family.

He has a more important mission that promises to be,

a job that will fulfill everyone’s life so important to me.

My Book is Available

https://www.tatepublishing.com/bookstore/book.php?w=9781634180368

I am extremely proud to present my book, Our Special Child:Jason’s Story. You can purchase it directly from the publisher’s site listed above in both book form or e-book.

On March 17, 2015 the book will launch on Amazon where it will also be available as an e-book and book form.

The back of the book reads as follows:

September 8, 1979, A young mother’s life dream of raising normal, healthy children and living a quiet life with her family vanished when her twin boys were born two months premature.

This is a heart-wrenching true story of a life full of emotional roller coasters and the love she feels for her sons, especially Jason, who was diagnosed with spastic quadriplegia.

She fills this book with passion that will tug at your heartstrings, causing you to either cry or laugh at times. You will feel and share her frustrations with each page you turn.

Eight years ago after learning that Jason passed away and deeply mourning and missing him, I realized he had a purpose in his short life. He was tucked away for so many years because of his severe disabilities, no one had a chance to know him, except for those who worked closely with him.

For this reason I decided to write Jason’s memoir. While writing the book, I became involved with groups on Facebook dealing with parents of cerebral palsy children and adults. They were sharing their posts of frustrations and the inabilities to understand how to get the best help for their children. This is when I decided the second reason for presenting Jason’s story to the public is to help these young parents. Maybe I can help them get through the hard times and also teach them how to advocate for their children.

I began to believe Jason was placed in my arms for a purpose, and God found me to be his caregiver.  How lucky I was!!!

Virtual hugs to all of my friends,
Jude

Approaching the Golden Years

If you have been following my blog for a while you probably know I am approaching my golden years. This is a polite way of announcing I will be signing up for medicare in August. The plus side of this transition into the golden years is my medical insurance will now cover almost all of my needs. I no longer have to pay the co-pays because I will have medicare and a secondary insurance to cover the expense. YEH FOR ME!!!

For most people approaching this new era in their life, they see it as a time to finally unwind from many years of being on a “treadmill”, do something you always wanted to do, sign up to do volunteer work or just be a couch potato if that is what you want to do.

For me I reinvented my life and I am just as busy as I always have been, maybe busier. For me, for the first time in my life, I am creating a career for myself. My life up to now has been dedicated to the care and well being of my children, especially Jason.

Before my children were born I was working at a great job, making decent money and I loved what I did. However, I now believe I never gave myself a chance to dig deep into my soul and find the creativity and inspiration I now have found. I was young and did not give it a thought because all I wanted at that time was to get married and have children.

I got married and had children. For some reason, G-D found strength, wisdom and mental fortitude I didn’t know existed in my soul; and he gave me Jason to nurture, protect, and advocate for until he took him away from me. I now understand G-D’s reasoning and now I know why I am creating a new life in my golden years. I am going to make the most of what time I have left and I am having the time of my life. Only good can come from my training all these years and I am going to make the most of it until it is time for me to leave this earth.

The premise of this blog post is the sadness I feel. In the last couple of weeks we lost two members of our NEHS 127 high school class mates. They were in the prime of their life, beginning the golden years like me. I mourn for their loss. I pray for their families to be strong and get through this difficult time.

It only makes me strive to make the most of each day I have on this earth because you will never know when it will be your last.

Virtual Hugs my friends,

Jude

A Parent’s Anguish Dealing with a Special Needs Child

I love to watch television and movies in my spare time. I am retired so I can manage my own time throughout the day. My television time is scheduled simultaneously at meals, late in the afternoon after a full day working in my studio, and in the early evening, after dinner and before I go to sleep. I enjoy knitting and crocheting while I watch television. This is my favorite time of the day, especially when my dog cuddles at my side. My family room is very warm and cozy and it makes me feel at peace.

This morning while I was enjoying my breakfast, I turned on the television and watched a show from my DVR. I tend to watch thrillers, police dramas and political satire. Today it was a police drama and I was getting into the concept of the show. Usually the show begins with a murder and then you observe the characters tend to their forensic duties to narrow down the main suspects. Today the victim was a young girl who had autism. Okay…this got my attention. The main suspect was a man with a history of child molestation. It appeared obvious he was the murderer? No, it couldn’t be, if so, there would be no real story and it was only fifteen minutes into the show. I had no idea who it was, but certainly was intrigued. Fast forward to the end….the murderer was her father.

Okay, you say, what was his motive? This is the premise of my blog post. The father was so overwhelmed with the care of his autistic child he couldn’t bear it any longer. His motive, as he related to the detectives, “she was having a fit, kicking and screaming at me. I couldn’t handle it any more and held her down with the blanket over her face to keep her from screaming out.” He continued, “I just needed her to stop screaming. I didn’t mean to kill her. It just happened.”

The tragedy of this story is the obvious lack of support to parents who are living with this every day. Yes, it is only a drama, but it is based on real, everyday life. There are many parents who are living with special needs children every day and feeling the pain this father obviously felt. The difference, I hope, they do not make the ultimate sacrifice this father did. What really hit me like a brick, were the last words the father said to the detective as they took him away in hand cuffs, “I might as well go to prison, I already was living in prison at home.” I have no sympathy for this father. You do not kill your own child because she had autism. However, being a mother of a special needs child, I can see and feel the pain this father was going through.

This is an issue many parents are dealing with. We have many very difficult issues facing us in this world today that need to be fixed. I would definitely put this one on the list, wouldn’t you?

Jude

A Smile That Can Light Up A Room

Our Special Child
Jason’s Story

“Smile”
Natalie Cole

“Smile”
Natalie Cole

A smile is the first cognitive skill Jason mastered as a baby. He quickly understood if he smiled at somebody he would receive a smile back. Therefore, Jason always smiled. Unfortunately, it is my opinion, he began to depend on his smile all the time, even when he didn’t need it. I tried to teach him other ways to express himself but he always came back with his classic smile.

He began to hide behind his smile. He would never show he was in pain, except occasionally for me. I would ask him if he is in pain, and he would give me a small pout and then smile again. He rarely expressed pain to me, only after a surgical procedure. He believed pain was part of his life.

On December 22, 2006 he found it harder and harder to hide behind his smile with his physical and mental pain. He just couldn’t do it anymore. This is when he left us to a better place where he could finally be in peace and tranquility. I now accept and understand this; it was really hard for a long time. He is now my guardian angel guiding me to help others to smile, be happy with inspirational thoughts and wisdom.

Virtual Hugs to all of you, my friends,
Jude

Memories of my Life with Jason

I use to love this time of year, preparing Thanksgiving dinner, planning and making lists for gifts for Hanukkah and Christmas, and our Hanukkah Party and New Years Eve celebrations. The malls all decorated with their lights and Christmas trees with Santa awaiting the next young child to sit on his lap. Years ago I loved to travel to downtown Philadelphia to watch the light show at Wanamaker’s Department Store and walk through the Christmas Toy Land in Lit Brothers Department store with my parents and sister; later on with my children.

Now they are all memories because Thanksgiving is not the same with many of my loving family members no longer with me. New Years Eve is not the same, I am lucky if I can keep my eyes open pass 10 pm. Both Wanamaker’s and Lit Brothers Department stores no longer exist but the store that now resides in the old Wanamaker building, still continues the tradition of the light show, and I am so grateful for the new generation to enjoy it.

For me, life tragically took away the brightness from this time of year because my mother and son both passed away in November and December. I try and participate in the holiday festivities with my son and grandchildren but it just is not the same. It will never be the same. However, I will always have my memories and this is a good thing.

In November of 2006 my son was admitted to the hospital for the last time. At this time, eight years ago, I was sitting by my son’s side, in the Intensive Care Unit, holding his hand. He developed aspirating double pneumonia and he was a very sick man. He knew I was with him and was comforted by my presence.

I would like to pay tribute to him now, through to the 22nd of December, to honor his memory and legacy of his life. I will share pictures of him from his earlier days, forward. This will end with a special tribute on December 22nd, the anniversary of his death.

I honor his life daily with my mixed media art business and this blog. I will soon launch a new Etsy.com store and a Facebook Store selling fiber creations, also inspired by what I learned from him. You will soon read about his story in my book which will be out sometime next year. His life needs to be honored in some way because he taught me so much about life, to see and feel the beauty in our world and within everyone souls. I want to share my inspiration with everyone which will create a legacy for him.

Jason’s Portrait
Eight Months Old 1980

I Believe/You Will Never Walk Alone – Barbara Streisand

Enjoy your weekend and shopping. I send virtual HUGS to all my friends and family.

Jude

A Mother Knows What Her Child Does Not Say

A Mother Knows!!

Danny’s Song by Anne Murray

A Mother does know what her child does not say, it is called mother’s instinct. I had a very strong mother’s instinct. I knew when my son Michael was sick, depressed, upset or tired. I looked into his eyes and they told me everything I needed to know. He is now an adult with children of his own but I can still read his eyes. I will always have the mother’s instinct no matter how old he is.

For Jason, however, he was unable to communicate. I understood very early in his life how to communicate with him and how he communicated with me. For example, he was diagnosed to have apnea as an infant. This means he stopped breathing. When Jason finally came home after five months in the hospital, I used my mother’s instinct on him as well. After observing his apnea spells, I realized he was using it to get attention. He was holding his breath. Unfortunately for Jason, he held his breath so long, he was unable to start breathing again until he turned blue and fainted. When he reached this point he then started breathing again. He would recover and look at me. He got the attention he wanted.

When he was older, I was able to read his facial expressions along with his eyes. I would ask him a question and he would respond with either a smile, pout, frown, or tears, depending on what the situation was.

After a surgical procedure, I was invited to see him in the recovery room. I would ask him if he was in pain and he would look at me with tears in his eyes and a pout that extended down to his neck. This very clearly meant he was scared and was experiencing pain. The nurses would give him pain medication, and after a few minutes, he smiled at me and fell asleep.

Jason and I had a special connection with communication. He depended on me even more because I was able to understand him. It was the greatest gift I could give him and I was honored to be his communicator.

I only wished he could have found a way to tell me he was leaving me for a better place. I had a hard time accepting his decision to enter heaven’s door without saying goodbye. I finally realized he needed to do it his way.

Best wish my friends,
Hugs….Jude

Two New Paintings Completed

I am busy this fall showing at local craft shows. I have three this month, two in November and two in December so far. In addition to the above I received the proof of my book which needs to be proofread again before it is finalized. With that being said I also visit the gym three days a week and babysit my grandchildren on Tuesday for 14 hours. Wooo….I am tired just thinking about it. Don’t let me fool you…I love every minute I spend with all my activities, especially my grandchildren.

Below are two completed paintings. I tried a new technique using tracing paper. I trace either a found image or an image from my sketch book and trace them. I collage the tracing paper with the image on the painting. What is cool about this technique is the tracing paper is so thin that when it is placed on the painting you can see the mixed media background through it. I really like how it turned out and definitely will be using this technique again.

I do not like my handwriting and I am always looking for a way to print my quotes without typing them. By using the tracing paper I can trace over the letters and it appears like I printed it. It also allows me to overlap images that really gives it a cool look.

Disability Awareness

Disability Awareness

Cool isn’t it?

I am hoping this fall will be a positive experience for me. I really want to spread the word about my inspiration paintings and the positive effects they can make in my community. Disability awareness is my priority along with equality and peace. Of course it would be nice to sell a painting or two. My inner critic needs to “shut up” and only one sale will do the job. 🙂

Have a great day
Hugs
Jude