Monday, May 3, 2010

Remembering My Brother Charlie!

Charlie & me~ 1963

Hi To All,

I could not let today go by without remembering my brother Charlie. You see, today, May 3rd, would have been his 50th birthday!

My brother Charlie passed away in 2000, at the age of 40, after a long battle with Hodgkin's disease. Charlie and I were only 16 months apart and so we grew up like "twins". (see picture above) Charlie was such a special person. He had such a "funny" way about him. He was the "life" of the party. In fact, he was the type of person you would want at your party, because you were guaranteed that the party would be an overwhelming success!

There are so many wonderful memories I have of him. We were four siblings growing up. There were my two brothers - Charlie & Vinnie; and me and my sister Carol. I can remember the time when we were little, growing up in Brooklyn, N.Y. My Mom & Dad had purchased a brand new car. I think it was a blue Chevy. We wanted to go with my Dad to pick it up, but instead we both had to watch from our apartment window as he drove up with it --- you see, we both had the "mumps" and so we had to stay at home! Even there, we were like "twins", always getting sick together and always getting in trouble together too! Like the time I inadvertently caught his finger in the gate outside, because we decided to have some fun and use the swinging gate as a "ride"!

And when, he was diagnosed at the age of 31 with Hodgkin's, I knew that if anyone was going to be his "match" it would be me --- I just knew! And so, when all the siblings were tested to see who would be his "match" - it was me --- I was a perfect match --- the kind the doctors said you only find in actual "twins". For Charlie though, his healing was not to be here on Earth, but up above in heaven. And it is there that we will one day meet again!

So, today, May 3rd, I want to wish a Happy 50th Birthday to my special brother Charlie, up in heaven. Thanks for watching over me from up above!

Love always, your "twin"
Sarah xoxo

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Fern said...

I look forward to meeting him there as well. He must have been a very special man to you have had you, Sarah, as his sister. May today be full of good memories that make you smile when you think of him.

Anonymous said...

IN THIS PLACE(we sang May 2 at Mass)

We are all hungry people, we need shelter and strength. We are one in our hurting, we are one in our pain. In our suffering and sadness, we are saved by the grace of the power and the Spirit that is here in this place.

Refrain: We are gathered at the table as one in the Lord. We are gathered as people who are living the Word. Our hearts and our spirits are nurtured by grace. It is Jesus who fills us. He is here in this place.

All our lives are a Mystery:we see not where they lead. We are asked now to trust you and we know we must believe. As our feet become Christ's feet, we go forth with the grace of the power and the Spirit that is here in this place.

Though the world may tell us to look at ourselves, we reach out to another where suffering dwells. As our hands become Christ;s hands, we go forth with the grace of the power and the Spirit that is here in this place.

In the bread that is broken is the Christ that restores. As we take, now receive him, we find love evermore. As the bread becomes Body, we are filled with the grace of the power and the Spirit that is here in this place.

Remembering my sister Judy and your brother Charlie. I share in the saddness of all those who have lost a sibling. May we have peace knowing that we shared many happy times with them and that they are at peace with the Lord.
from Saraoga(hot hot 90 degrees)
Love to all,

Michelle said...

happy birthday uncle charlie, even though i was only 4 when you died, i still remember touching your rough beard:)I love youu!!

katherine said...

happy birthday uncle charlie!!!! i love you soooo much.

for those of you who dont know my uncle charlie all i have to say is that he was the greatest uncle ive ever had (i love you too tho uncle vinny!) he always made everyone around him laugh and he would always take funny pictures of himself on our cameras when no one was looking..he was my godfather and he was the best!!!

Anonymous said...

Dearest Jessica and Gina, Happy Charlie's birthday! I know how special he was to you both. It is so important to remember our loved ones and the happy times we had with them. My sister Lisa's birthday was April 19th, she would have been 44. Although she is gone from here, I feel that she is with me all the time and helps me get through difficult things. Charlie and Lisa both knew how to persevere through illness with strength and good humor, and I know that they are helping you with that from Heaven! I will have a glass of wine tonight and drink a toast to Charlie and to you both... Love always, Angel xoxoxoxoxoxoxoxoxo

Anonymous said...
This comment has been removed by a blog administrator.
Nancy said...

Happy Birthday Charlie! I feel like I know him from your story. Your writings are like a book. So many awaken each day to see what is happening today on Jessica's Journey! Thank you for keeping us connected as your prayer family!

You have a wonderful family and we are thankful to have you all in our lives.

XOXO Nancy & Joe

Aunt Rosie said...

Sarah, I pray for Charlie and Danny every single night. I ask God to keep them safe in his arms in Heaven. Charlie was a loving, caring and vibrant man. You know, Danny was somewhat like him. Your mother and I miss them 24/7. Give my love to Jessica. P.S. I think your father's car was a Pontiac, twotone blue. I totally remember him the night he bought the car. It was a stick shift, you see, and he came up Suydam St. bucking the car all the way! Aunt El and I were laughing so hard. You have to picture him stopping and starting every 2 feet. Those were the days

Joanne said...

Good morning Jessica and Sarah! I enjoyed your story about your brother, Charlie. Those of us that are lucky enough to have brothers that we are that close to are fortunate, indeed! Happy Birthday, Charlie!

Anonymous said...

No words...he is truly missed, loved and thought about everyday. Lots of love Cousin Danny and Uncle Charlie!


adrienne said...

No words...he is truly missed, loved and thought about everyday. Lots of love Cousin Danny and Uncle Charlie!


Jessica's Journey to Getting Her Life Back

By Sarah Gina (Jessica's Mom)

As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!

Jessica’s Story

Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.

Jessica and her sisters, 2 mos. before becoming ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.

She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!

Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.

Jessica's painful skin lesions

Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!

At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.

Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.

July 2003, Jessica's Lyme disease rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.

Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.

During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.

Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.

We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.

Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….

We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.

God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!