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CHAPTER I INTRODUCTION
This chapter consists of four parts, namely: background of the study, problem formulation, objectives of the study, and definition of terms. Background
of the study provides information of the topic of the study and the reasons for choosing the topic. Problem formulation states the problem to discuss. In the
objectives of the study, the writer conveys the aims of the study. The last is definition of terms. It clarifies terms that are being used throughout this study.
A. Background of the Study
In the website of National Down Syndrome Society titled Down Syndrome
, it is stated that Down syndrome is a chromosomal disorder. It is caused by error division of the embryo cell. In a normal division, an embryo has 23 pairs
of chromosome or 46 chromosomes. In Down syndrome case, an embryo has 47 chromosomes because of an extra chromosome in the 21
st
chromosome Down Syndrome, n.d..
As cited from the website of National Down Syndrome Society, it is stated that a newborn baby with Down syndrome is certainly different from a baby who
is born in normal condition. A baby with Down syndrome can be first easily identified from hisher physical appearance such as flat facial profile, an upward
slant to the eyes, an abnormal shape of the ear, a large space between first and second toe. In advance, baby with Down syndrome has big possibility to suffer
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2 from a lot of diseases. They are heart defect, hearing and vision problems,
leukemia, and other diseases. When the baby is growing older heshe is possible to develop Alzheimer’s disease. It is not only about health problems. In hisher
development, a child with Down syndrome may face cognitive development problem Down Syndrome, n.d.. As cited from the website of National Institutes
of Health, Eunice Kennedy Shriver adds that a child with Down syndrome has speech delay longer speech development even speech error and low-respond
ability because heshe takes longer to learn language. Besides, the parents also have to be aware of the delay in their babies doing activity such as sit, walk, and
the other activities “Facts about Down Syndrome”, 2008. People with Down syndrome are people who have to struggle with their
limited condition. They may have such characteristics which need special attention, but they are unique. They deserve to be treated without prejudice so that
they can develop like other individuals. Buckley 2000 in an overview entitled Living with Down syndrome
says that individual with Down syndrome are people first who have the same rights and needs as other individuals. The term of people
first deals with the words to describe people because they convey message. The person should be mentioned first. Referring the term above, the label “A child
with Down Syndrome” is more accepted than “a Downs child”. Buckley also says that “babies with Down Syndrome are babies first, with the same needs for love,
security, warmth, and stimulation as all babies” p. 3. Furthermore, the development of the babies and children with Down syndrome is influenced by the
quality of love, care, stimulation, education, and social experience provided and
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3 supported by the family or the community they meet, live and grow up. Therefore,
parents play the most important role in child’s development para. 2-5. As cited from the website of National Institutes of Health, Eunice Kennedy Shriver insists
parents to keep in their mind that children with Down syndrome have a lot of abilities and talents to develop as other children do. It is also suggested that
parents should not compare children’s with Down syndrome development to other children’s development “Facts about Down Syndrome”, 2008.
In the website of Parents first for Health by Great Ormond Street Hospital, as cited from an article entitled Raising a Child with Down’s syndrome, Stuart
Mills states that some parents go through a grieving process finding their baby have Down syndrome. Families have to face this condition with very complex
emotions: fear, protectiveness and images or perceptions that they have a child with Down syndrome. Parents find it hard to see the label of Down syndrome on
their child although they try to realize that their child is like other children “Raising a Child with Down’s syndrome”, 2008.
Parents’ fears and difficulties in raising a child with Down syndrome are clearly depicted in the novel The Memory Keeper’s Daughter by Kim Edwards.
The novel tells a story about a doctor named David Henry. He gets married with Norah. The story begins in March 1964 when Norah gets into labor. Then, the
problem arises when Norah gives births to twin babies. The first is a boy. He is born in a good and healthy condition. Few minutes later, another baby is born.
The other baby is a girl. At a glance, the twins are the same, but David Henry
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4 feels something different with his baby girl. The baby girl has Down syndrome.
David Henry is both desperate and disappointed. David recalls his childhood. His sister, June, could not stay alive because
of Down syndrome. The death of his sister causes his mother’s grief and also his family’s grieves. David does not want to see Norah in grief because of having a
daughter with Down syndrome. In a short time, David decides to take the baby girl away. He asks Caroline, a nurse in the hospital to put the baby into an
institution hoping that the baby will get medical treatment. Then, David tells Norah that the daughter has died and he keeps the secret until his death.
Unfortunately, the nurse looks after the baby, later called Phoebe, until the child grows up. Although she is a stepmother for Phoebe, she takes the hardest life
for Phoebe. Caroline leaves her job as a nurse. She applies for a maid for an old man and earns money from this job. She collects a lot of information about Down
syndrome and consults doctor in order to take care of Phoebe well. Caroline and other parents who join Upside Down Society fight for their children’s education.
They ask the board of school to include their children with Down syndrome in a public school although finally they cannot achieve their demand. Caroline teaches
Phoebe to do activities such as walking, holding things, using bathroom, and arranging words so that Phoebe is able to speak orderly. Caroline takes care of
Phoebe patiently and full of affection. She gives most of her time, attention, money and even herself to Phoebe. Later, when Phoebe grows up she is able to
earn money and is sure to get married. As David dies, Caroline tells Norah that
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5 her daughter who has Down syndrome is still alive. The story ends with the
meeting of the twins, Paul and Phoebe. The Memory Keeper’s Daughter
is interesting to discuss. It tells us how David’s fear of his sister with Down syndrome and family’s grieves leads him
into a decision to take his daughter with Down syndrome away. David’s decision brings greats effect on his family life and gets David to blame himself for all
problems in his family. This novel also tells Caroline’s great struggle for Phoebe so that she can stay alive and fight against Down syndrome.
B. Problem Formulation