A crash can be
heard from the upstairs portion of the Hope residence, even over the phone.
When asked if things were alright, a Caribbean-accented “Yeah” is the reply.
Then there is singing and the sounds of a piano for a few minutes before another
crash. The crashing, singing and musical sounds are normal in the home of
Raylene Hope, their source being her sixteen year old son, Winston. The phone
scuffles for a moment as Winston pulls the phone from his mother’s ear, eagerly
pushing the buttons to hear the beeps. A sharp “Winston!” is heard before a
breathless Raylene is back on the phone, apologizing as she puts away the
laundry. She never seemed to stop moving for a second, the clashing of plastic
toys and folding of clothes becoming the background music as her story begins.
May 12th,
1964 marked a special day in the lives of the Williams family. In the Memorial
Hospital of New Amsterdam, located in Berbice, Guyana, Raylene Emily was
brought into the world. Being the youngest of her many siblings, she was surrounded
by a loving, healthy and strong family. Though her life was content growing up,
Raylene knew that even better opportunities lay ahead for her, especially in
America. She couldn’t wait until she was in a new country and starting a family
of her own. After marrying her husband, Valmond, who was in the United States
military, in April of 1988, they both moved to Plattsburg, New York. Life,
however, wasn’t as easy as she had anticipated.
Things were much
different living in America, even more so than Raylene expected. “If I had to
choose, I’d pick Guyana because that’s what I know. When you come over as a
child, it’s easier because you’re young and you get to go to school and stuff,
but when you’re an adult because you have to find work.” Before being able to
find work, Raylene and her husband welcomed a baby girl into their family,
three years after they had moved to the States. The welcoming, however, was not
an exciting one. Tamika, their daughter, was born through an emergency cesarean
operation one month before her due date. Her umbilical cord was wrapped around
her throat, causing some health problems for both the new born and her mother.
After a short stay in the hospital, both were sent home and soon, the small
family was relocated to Germany.
With a new baby,
and in yet another new country, Raylene was able to find work on the military
base at the child development center working with small children. Life was good
for the next few years, raising Tamika, who was developing well and being a healthy
little girl and, in the middle of 1994, Raylene and Valmond began to prepare
for the addition of a new baby. All of the excitement was short lived, however.
On December 20th, 1994, Winston Patrick Hope made his way into the
world, four months before he was due. Even with being a natural birth, Winston
was born so early that everything in his body was underdeveloped, both mentally
and physically, and his retinas detached from his eyes, leaving him blind after
only three days of life.
Raylene and her
husband were extremely surprised that their son had been born so early. They
barely had any time to get used to her being pregnant. “By the time I started enjoying the pregnancy
with Winston, there he is!” They weren’t even aware of any complications,
though the risk was a great one. The doctors in Germany may have even been
partially to blame. “After I had Tamika, the doctor told me that, when I go
overseas, if I get pregnant to tell them that I’m high risk, but they didn’t
listen.” Because of this, Raylene and her family would spend the next year and
a half in and out of hospitals both in Germany and the United States, wondering
if their newest addition would ever be able to come home.
A few months after
his birth, Winston was transported to Alfred I. Dupont hospital in Wilmington,
Delaware, the rest of the family relocating as well. For the next six months,
Raylene lived with Tamika in a Ronald McDonald House located within walking
distance from the hospital in which Winston now held residency. Valmond had been
given orders to the Air Force Base in Dover, Delaware, so he lived on the base
in the dorms and visited every weekend.
Raylene and Tamika
fell into a daily routine while in Wilmington, walking from the Ronald McDonald
House to the hospital singing hymns and nursery rhymes, clapping and dancing as
they walked through the gates of the property. Once they got into the hospital,
their spirits would either be lifted or dropped. Winston’s health was very
touch a go, his prognosis constantly changing. They were never certain if he
was going to live or if this would be their last day with him. “Every time you
go, you don’t know what news you’re going to get,” Raylene explained.
Throughout it all, she remained as strong as she could for her family and
prayed every single day for her son to make it and be strong enough to take
home soon.
Eighteen months
after his birth, Raylene’s prayers were answered and Winston was finally
released to go home. His homecoming would not be without some hefty
responsibilities. Due to Winston’s condition, he had to have a tracheotomy
performed when he was born, leaving him with a tube in his throat in order for
him to breathe. He was constantly on a heart monitor and had a feeding tube in
his stomach for him to receive formula in. Raylene’s relief that her son was
okay soon became overpowered by life and the long hours she now had to invest
in each day for the next sixteen years.
Presently, a
typical day for Raylene starts at six in the morning, waking up to feed and
bathe Winston and get him ready for school. He leaves for school with a nurse
while she goes to work at the Child Development Center on base. Once she gets
off from work around six, she comes back home and relieves the nurse just in
time to feed Winston. She then takes care of him until 10:30 at night before
going to sleep and starting all over. It’s a tedious and redundant life, making
one wonder if she ever wishes things were different. “Yeah, sometimes. Come on,
I’m a human being. Who’s not gonna wish they had a normal life, you know what I
mean.”
Life has become easier, with Winston now
strong and as healthy as he could be. The tube is no longer in his throat and
he can drink his formula by mouth when he’s awake. However, things are not
perfect.
“I don’t wish it
on my worst enemy,” Raylene insists about her life, even now. “No matter what
someone did to me, I wouldn’t wish them to go through what I went through with
Winston.”
It’s become
smoother of a life for Raylene, but raising a special needs child will never be
an ideal task for her. The love she has for Winston and the strength she has
for life just makes this supermom's days go by with more ease.
The weight that she carries is a heavy one, many of her responsibilities being underrated by those around her. I should know; I’m her daughter. She honestly makes it look so simple. I mean, I know how hard it is because I’ve helped her, but I couldn’t do even half of what she does every day. My mom is the strongest person I have ever known. I share this story because people like her are often overlooked, even by those around them, for their strength, dedication and patience in dealing with a lifestyle most could not imagine living.