My Autistic Brain Tumor Survivor

My Family

My Wedding 5/12/1984

My Wedding 5/12/1984

Sylvia Phillips- Faith, Hope, and Love

Me in June 2015

My Husband Malcolm in December 2014.

My Husband Malcolm in December 2014.

James Michael

James Michael is my first born son. He was born  five weeks prematurely just one month shy of my eighteenth birthday.   He weighed in at 5 lbs. and 3 oz. and was 18 inches long. He was by far the tiniest baby I had ever seen!    Looking back, it’s a miracle that he survived as  I had no idea what I was doing and had no family living nearby to counsel me, which is a whole other story that I will someday share!

Jimmy had some trouble breathing at birth and I was told that he had Hyaline Membrane Disease. This is the very same disease that a few years before had taken the life of Patrick Kennedy, John F. and Jackie Kennedy’s newborn son. Today this disease is known as Respiratory Distress Syndrome. I was devastated and heartbroken. I thought my little baby boy was going to die, but the doctor assured me that Jimmy’s case wasn’t that severe. However, he would have to be transferred to Children’s Orthopedic Hospital for treatment where he spent the next two weeks in the NICU receiving oxygen. Not being able to bring Jimmy home with me was the hardest thing I had ever done up to that point. My heart ached every minute he was away from me.

I had so been looking forward to breastfeeding him.  I was devastated thinking that I would not be able to do so after all.   Thankfully, a kind nurse corrected me of my misconception.  She explained to me how I could still eventually breastfeed him and I was able to successfully wean him from bottle to breast once he came home. I was very happy and proud of this accomplishment as his Pediatrician had told me that only one out ten mothers were able to successfully achieve so favorable an outcome! Once on the breast Jimmy then proceeded to become very healthy and doubled and tripled his weight very quickly. Thanks to God, he has never had any other major health issues despite his rocky beginning.  Actually it is thanks to God that he survived and thrived so well despite such a clueless mother.  But I learned as I went along!

Jim grew into a good natured, even tempered, cute, and chubby toddler. He has always been interested in art and drawing and being homeschooled provided him with ample time to perfect his craft!  Jim loved to read also.  I used to have to make him go outside to read so he would get some fresh air!   He loved to read while perched in our old Willow tree.  He would get so excited about reading encyclopedias that we decided to buy him a 1987 set of World Book Encyclopedias.  He was in information heaven!  One year when he was a teenager he even asked for a Physics text book

Jim was homeschooled until his senior year of high school when he enrolled in two year Graphic Arts program which he completed in one year. He graduated from the Art Institute of Pittsburgh with a degree in Fine Art/ Animation in 1997. His first job after graduating was at M-Pen in NYC animating video games. He has worked as an Art Director at Time and a Design Director at Harper Collins Publishers. He is currently a Design Director at Nielson in NYC. We are delighted with the accomplishments Jim has achieved!

You can take a look at Jim’s website here!

Jim  met Jasmine at a coffee shop in Jersey City. They were married in 2009 at the Millenium Hilton in Seoul, Korea. We couldn’t be happier with Jim’s decision to marry Jasmine. She is a sweet, smart, talented, and beautiful young woman and she takes good care of Jim! We are very proud of Jim and Jas and love them very much!

Jasmine was born in Korea where she worked in women’s fashion. She came to NYC in 2006 where she earned a Fashion Design degree from FIT. She has designed clothes for Macy’s, JC Penney’s, and Coldwater Creek. She is currently designing for Guess.

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Brian Joseph

Brian Joseph, my second son was born in the lovely month of June. If it wasn’t bad enough that his older brother had been born prematurely two and a half years earlier, it certainly was horrifying when at three days old baby Brian was diagnosed with Meningitis! Thank God that back then new moms and their babies stayed in the hospital for four days. I hate to think of what might have transpired if we had been discharged before the diagnosis!

Brian had latched perfectly on my breast and nursed well for about twenty four hours. After that he was suddenly not interested in eating at all. The nurses assured me that it was normal for new babies to be a little groggy and uninterested in eating. I was not so sure and was beginning to worry.

On the third day my father come to visit us in the hospital and when we went down to the nursery to “view” Brian through the glass we noticed that he was turning blue every time he cried. Grandpa and I both knew he was sick and we informed the nurse of our fears. After my poor little guy went through the agony of a spinal tap he was given the diagnosis of bacterial Meningitis. I once again had another newborn whisked away from me into the NICU! And once again, I was devastated and heartbroken wondering if my little baby would survive. Brian’s condition was quite a bit more serious than Jimmy’s had been at birth.  It is almost impossible to adequately describe the anguish and emptiness I felt leaving the hospital without my baby again!   I felt like my heart had  been ripped out of me.

At just over eight pounds, Brian looked like a giant compared to all the premature babies in the NICU!  For two weeks I was not able to hold or even touch him except through the gloves on the sides of the isolette. Obviously, I was not able to nurse him either, but this time I knew how to prepare so that eventually I’d be able to!

When Brian was two weeks old I was finally able to hold and attempt to nurse him. To my great surprise and delight he latched right on just like an old pro and he never let go again until he was two and a half years old!!!    After spending nineteen days in the hospital, Brian was discharged and came home!  Finally I could breathe again and he,  Jimmy and I could begin our lives together!

Brian was a very cranky baby.  It seemed like he cried all the time!  But with all that he had been through a little crankiness was to be expected.  He was prone to getting croup and did end up back in the hospital for breathing treatments twice.  The third time his Pediatrician wanted to admit him for croup again, I began to cry and told him, “No.  I can do the same things they do for him there at home myself”.  The doctor agreed and Brian never had to go back to the hospital again!

Brian hardly ever slept as an infant.   He was a velcro baby- attached to me.  He never would permit me to put him down.  I held him constantly and he slept right beside me all night!  As a toddler he was always climbing, running, getting hurt and having temper tantrums.  As he grew a little older  he did calm down quite a bit.  He loved the “He-Man” cartoon, the beach, riding bikes, playing soccer, and going to Thornely Chapel in Ocean Grove!

As a teenager,  Brian loved skate boarding.  He has always loved being around people, being active, and having lot’s to do. His personality did not mix well with living so isolated up here in the north country out in the middle of nowhere, so we began allowing  him to  spend most of his summers at the beach with  my parents at their hotel.  He loved living there and  working at the ice cream shop down in Ocean Grove.

Brian had many friends at the beach but  none back home.  One summer when he was sixteen he met his very first girlfriend in Ocean Grove.  After coming back home for the winter, he became so depressed and missed his friends and girlfriend so much that  he asked if he could go back and live there all year.   We agreed and my father continued his homeschooling program with  him for the next two years.  After that he enrolled in the local college down there where he earned his Criminal Justice  Degree.  During this time, Brian also became interested in music and taught himself how to play the guitar.  He began writing and performing his own original songs in local clubs.

Brian has worked hard along with many others attempting to revive the music scene in Asbury Park, NJ.   In fact,  he has been instrumental in forming several local bands in which he was lead singer.  His band performs at The Saint,  The Stone Pony, and other local clubs.  They also perform benefit concerts to raise awareness and funding for various local human service agencies and charities.

Perhaps Brian’s greatest accomplishment however, are his beautiful little son and daughter. My grandson loves the beach just like his dad did when he was little!  He is just as active as his father was too.  He likes playing soccer and T-ball.  He is such a sweet, cute, happy, and busy little bee!  He definitely keeps his father on his toes.

My beautiful granddaughter is just as cute as a button! She’s a wiggle worm and never stops moving! According to my son, she has a more intense and demanding personality than her brother did at her age!

Unfortunately, we don’t get to see our grandkids as much as we’d like to, but when we can’t get together, we take advantage of Skype quite a bit! Thank God for technology to help us keep in touch!

Brian is a Great dad and a Great husband!  He’s a  kind, compassionate  and conscientious young man.  He likes helping people, perhaps to a fault at times and he’s a peacemaker of sorts.  We are very proud of Brian, his talents and his accomplishments!  We love Brian, Leila, our grandson, and granddaughter so very much!

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Micah Benjamin

Micah Benjamin was born on February 24.  He was my first home birthed baby, born eleven days late.  He came into this world exactly nine months after our wedding weighing in at a whopping ten pounds twelve ounces! Shockingly, perhaps unbelievably Micah has the distinction of actually being my easiest baby to give birth to!

Micah was a content little guy who like to be rocked to sleep. He was a happy baby and rarely cried. After having his first round of immunizations he cried for several days and began to scream a very strange high pitched scream. We took him to his pediatrician thinking he was sick. The doctor told us that he had an ear infection. He was prescribed antibiotics, he quit crying and seemed to feel better, until his next round of immunizations that is. Unfortunately, the same scenario unfolded. We took him to his doctor and were once again told that Micah had an ear infection and he was prescribed antibiotics again.

We though that it was a little weird that he would get another ear infection after receiving his immunizations again. I was suspicious. I knew that some kids did not tolerate their immunizations very well, so I began researching side effects of the immunizations. A high pitched scream seemed to be one of the side effects of the immunizations. I also discovered that some immunizations could even inflict permanent brain damage on children who had a bad reaction to them. Thankfully, Micah did not suffer any brain damage, but we decided not to take any more chances. We made the controversial decision to never immunize him again nor would we immunize any other children that we might have.

When Micah began talking at fourteen months he didn’t start with a simple Mama or Dada. The very first words he ever uttered were, “I see the birds” which he spoke while we were strolling through a display of stuffed birds at our local nature center! He loved to watch the birds that visited our bird feeder and he carried around a tiny little bird identification book everywhere he went. Micah loved to sing the Thumbkin song and one day when he was around two he announced that he was going to marry me!

When Micah was nine, my sister-in-law gave us our very first video camera as a Christmas gift. Micah quickly learned how to use the camera. His first project was a simple short stop and go claymation cartoon. He then moved on to shoot stop and go animation using his action figures. He even made a James Bond spoof film, “James Bund” using his sister’s barbie dolls and her doll house family! As he grew a little older he began writing, directing and acting in his own comedy skits. Later he recruited his brothers, sisters, and cousins to act in his films.

Micah was homeschooled until his senior year when he attended public school. He graduated from college Magna Cum laude in 2008. He lives on his own closer to NYC. He still writes and directs his own short films. He is also a freelance videographer  by day and by night and on the weekends he does improv in the city with a group of other actors.

Micah is a sweet and very talented funny young man. We are so proud of him and just know that he’s going to make it big someday! Some time in the near future don’t be surprised if you watch a film and see the name, Micah Benjamin Phillips somewhere in the credits!

 

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Josiah Shem

My son Josiah was born at home on September 4.  He was 8 pounds and 3 ounces! He was such a cute little blondie! He looked like an angel, but he was the only one of my children to ever bite me while nursing!

When he was about eight months old my husband used to drive him down to our local Quickway in the evenings to visit with the old guys who hung out there. He adored sitting in the middle of the table being the center of attention! Even though the Quickway was only about a one minute drive from our house, Josiah would always be sound asleep when he got home!

Later when he was about two years old he could never decide if he wanted to stay home with me or go out with Dad and he could never find his shoes when it was time to go! Dad would get him in the car and barely drive out of the driveway when Josiah would start screaming for Mom. Dad would bring him back home then be on his way again. As soon as Dad was out the door, Josiah would scream for Dad! Those were the good old days!!

When Josiah was two and a half years old we discovered that he had a hernia and  would need surgery to repair it.  Can you believe that our car broke down on the way to the hospital and we had to hitch hike the rest of the way there?  Turning him over to the nurses and surgeons  was so difficult.  I knew it was a simple, quick and routine surgery but I cried and cried until he was taken to recovery.  When he woke up he was thrilled with all the attention, television (we didn’t have one) and special attention!

In the wee hours of the morning on July 11, 1990 when Josiah was about 2 1/2 he woke up to see his little brother, Nathanael being born! He sauntered into the room thinking that he was going to climb into bed with me for a little nursing but instead he very calmly hoisted himself up in the old overstuffed chair next to my bed and proceeded to watch the whole process as if it was nothing out of the ordinary. After everything had calmed down I had Josiah lying on one side of me in bed and Nathanael on the other, both of them nursing away!!

Josiah has always loved drawing and grew up to earn a Fine Arts Degree. He has designed his own and others’ tattoos and has been commissioned to draw and design T-shirts. Currently he has been unable to find a job in his field but continues to free lance while working as a cook! His a lovely wife, Katy, has a Master’s Degree in education. We are very proud of the wonderful and talented young man that Josiah has become

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Nathanael David

I won’t say much about Nate,  because this son of mine generally likes to keep details of his private life- private.  However, he doesn’t mind if I do say this much- he was born at home on 7/11 which makes his birthday the only one his father can remember! Nate graduated college with a Bachelor’s Degree in Network Administration in 2014. We are so proud of him!
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Rachel Damaris AKA Big Sis

Rachel made her dramatic debut on our ninth anniversary. Sometimes her birthday actually falls on Mother’s Day too! We had been planning a home birth just as we had for three out of five of her big brothers. We did not know she would be a girl before she was born. After having five boys in a row, we just took it in stride that we would have another boy.

When my contractions began coming at regular intervals, we called our midwife who lived an hour’s drive away. It soon became clear, however that she was not going to make it before the baby’s birth. My husband got ready to do the job. Funny, but I was not in the least bit scared or nervous. I had every confidence that my husband had the skills to do it! So Rachel was born into her fathers hands! Upon her birth he promptly told me that he had to put her back because she was missing parts! A few minutes after she popped out the midwife arrived and took over doing what midwives do.

I tried in vain to dress Rachel in girly and frilly attire, but this only lasted for so long. As soon as she was capable of forming her own opinions about “style” and with only five big brothers as role models, she was more of a tom boy than mommy’s little girl. One day after Rebekah was born, I wanted to buy them both the same shoes. I thought it would be cute. However, Rachel thought this was a stupid idea! She informed me that if I bought Rebekah the same shoes as her then she would never wear hers!!

When Rachel was about five I had started getting into sewing and asked her to pick out fabric for a summer outfit. She chose red plaid print with red tractors on it! She did consent to letting me attach a little lace to the hem, however!  It didn’t help matters that it had never even occurred to me to get her girl toys until she was about three years old! After we had visited a friend whose daughter had a pretend kitchen, dolls and baby carriages, it dawned on me that Rachel might want girlish toys to play with!

Rachel quickly learned that she could boss her big brothers around. She regularly roped  her brother, Nate into playing house with her! She would inform him what they were going to play and that he was going to be the dad. Then she would proceed to dictate to him exactly what he should do and even say!

Today Rachel has grown into a lovely young woman. I would describe her as sweet and sassy! She is a kind, open minded, opinionated and a sometimes sarcastic young lady! She has quiet demeanor most of the time but doesn’t hesitate to let you know when she thinks you are doing something wrong. She sneezes like a dainty little girl, but burps like a truck driver and she’s proud of it! She is also smart!

Rachel recently graduated from college Suma Cum Laude with a TESL degree  which means Teaching English as a Second Language. Her experience working in Nicaragua has influenced her desire to live in a foreign country,  and so currently, she is living in China and teaching English there!

Most importantly she loves Jesus and wants to live a life that is pleasing to Him! I have no doubt that she is and will continue to do so!

 

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Rebekah Abigail AKA Cutie Pie
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Rebekah is my seventh child. When I was eight months pregnant with her we still had not decided on a girl’s name that we liked. We had always had the perfect names picked out for each of our other children early in my pregnancies so not having a girl’s name chosen for this baby was disturbing to me. One day, in my infinite wisdom I got the bright idea to ask my husband if we should ask God for a name! He agreed and we prayed for God to choose a girl’s name for our seventh child.   The name that God gave us was  Rebekah Abigail.  Her first name means, “to ensnare with beauty, strong and controlling.” Can you believe that she really does enchant people with her charm?

Most of our children up to this point had been born at home, but my labor with her was uncharacteristically long so my husband insisted that we go to the hospital. I can tell you that after that bumpy car ride I could have just turned around and gone home and given birth to her there, but since we were already at the hospital we went in. I was quickly ushered into the Jacuzzi and out she popped, right there in the water!! So Rebekah has the distinction of being my first and only water baby!

Rebekah has grown into a lovely young woman full of kindness and compassion. She wouldn’t hurt even a fly’s feelings on purpose! She is the most forgiving person that I have ever known and she never holds a grudge. She is a social butterfly! Everyone likes Rebekah, especially preteen girls. Some moms have asked her to be “big sister” to their little girls because she is such a great role model for them! She loves little kids and always volunteers for Vacation Bible School. She is a discerner of spirits and instinctively knows who is good for her and who will bring her down. I don’t have to worry about her hanging out with the wrong crowd. She has had a crush on the same fine young man since she was about twelve and when she was 15 his father gave him permission to ask my husband’s permission to ask her out on a date. My husband said yes and they have been an “item” ever since!!

Rebekah hates math, but loves to write and take pictures. She has been writing essays and stories since she was about four! When she was little all her stories seemed to be centered around eating pizza! She loves helping people. She and Rachel went on a mission trip to Nicaragua in 2011 and now she is obsessed with going back. She really loves all the people she met there, especially the little ones, and wants to see them again! I have no doubt that she will!

Rebekah got married in 2015 to her childhood sweetheart who just graduated from college. Rebekah is currently in her junior year of college following in her sister’s footsteps to earn her own TESL Degree! I don’t know quite what the future holds for Rebekah and her husband, but what ever they decide to do, I know their future together will be full of blessings and that they will be a huge blessing to others!!

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Bethany Rose is next in line. She’s so special that she gets her very own page! You can her read partial biography at Brain Tumor Diagnosis
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Jeremiah Samuel AKA Jerry

Jeremiah was born into a strange world of cancer and disabilities. But he didn’t know it was a strange and weird kind of life. He has never known any other kind of life. Life was just what it was and still is what it is. He didn’t have to adjust to having a sick and disabled sibling like my other children did.  Jeremiah began accompanying us to Bethany’s numerous hospital, neurologist, neurosurgeon, opthamologist, oncologist, neuro-oncologist, brain tumor clinic, and developmental pediatrician doctor visits when he was just a couple of weeks old.
    As he grew a little older he enjoyed the many free passes to science, and children’s museums, zoos, and even aquariums that came with being a guest in several east coast Ronald McDonald Houses. In fact, we frequented one particularly beautiful and friendly Ronald McDonald House so often that we used to joke that it was our own personal vacation resort! My husband and I always did our best to combine these tedious medical trips and appointments with fun activities for all the kids to enjoy as well. We used to jokingly tell all of our kids that having a sister with a life threatening illness did come with certain advantages and fringe benefits!
    Jerry loved participating alongside Bethany for all of her in home sign language and pre-school lessons, as well as her speech, occupational, and physical therapy sessions. In fact, he learned many signs before he was even a year old! When a therapist or a teacher came to the door he assumed that they had come to work with him too! He was such a cute little thing. He always placed himself right smack dab in the middle of all the action! When a session was finished he would put his sweet, chubby, dimpled, little baby fingers together and sign “more”! He didn’t think any of this stuff was unusual, it was all just part of a routine and normal day to him.
    One day, it became apparent to us all that Jeremiah was going to surpass Bethany intellectually. That was hard (devastating) for me. Shortly after this realization, he said to me, “I know I am younger than Bethany, but technically I’m  older.” Now at ten, he is much older than Bethany, who at 14 functions at a two/ three year old level. He is very patient with her. He takes the time to talk to her and answer her relentless, and exact same questions every day. Sometimes several times a day. He stops playing “Everybody Edits” long enough to play hide and seek, or do funny dances with her. He also endures her endless tickles. He is human however, and does sometimes get annoyed and exasperated with her just as we all do and then we all feel selfish and guilty about it later.
    Jeremiah is a normal American boy. He loves the computer, iPad, Wii, climbing, running around, legos, ninjagos and weapons. He has loved weapons since he was just a tiny little tyke. I have no idea where he got that from! His favorite thing when he was little was to go shopping at a dollar store to find anything long and thin that he could pretend was a weapon. Long wooden dowels, batons, and yardsticks were treasures to him. I can’t even count how many giant plastic Christmas candy canes have been converted into weapons by Jerry !  Jeremiah is a comedian. He is our comic relief in the midst of what can sometimes be a sad and depressing life.  Jerry is a true joy! He is our wonderful, beautiful, sweet, patient, and forgiving little boy!
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7 Comments

  1. zoe

    What a great and gifted group! Congratulations!

    Reply
  2. Kerri

    I don’t know why, but it has taken me this long to read about your lovely children. As I always say, you simply amaze me. I think it takes a great set of parents to raise incredible children. I feel like I know all of them and you a little better now.

    Reply
  3. Mary Jeffers

    Lookin at all you photos they were so cute love you all God Bless You All.

    Reply
    1. Sylvia (Post author)

      Thanks Mary! We love you too!

      Reply
  4. Stephanie

    Awesome family you have!! I love all your kids’ bios!

    Reply
  5. tereza crump aka mytreasuredcreations

    What an amazing family! You are definitely a faithful mom! What a courageous woman you are! Thank you for sharing your stories with us.

    Reply
    1. Sylvia (Post author)

      Thanks so much for your encouraging and supportive comments, Tereza!

      Reply

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