Membesarkan anak dengan kebutuhan khusus adalah perjuangan setiap hari yang harus dihadapi orang tua. Begitu banyak kesulitan dan tantangan yang ditemukan. Berikut ini adalah sebuah artikel yang ditulis oleh seorang hamba Tuhan yang juga adalah seorang penulis, yang memiliki seorang anak dengan kebutuhan khusus ganda ( buta, autisme, keterbatasan kognitif, dan kelainan fisik dalam bentuk kejang-kejang).
WHEN NO EXPERIENCE IS NEEDED
“He had a seizure.” For two years I hadn’t heard that statement about
my oldest son, and I didn’t want to hear it now on New Year’s Eve. The
memories of three years of uncontrolled seizures rushed back: the
heartache of watching him hurt; these additional complications to our
lives on top of his other disabilities; the loss of control.
People hear and see things like that and begin to imagine what life
must be like to raise a child with a disability: “His or her quality of
life must be low, so low that nobody would want to live that life if
given a choice” or “The marriage and rest of the family must be
significantly and negatively impacted and that isn’t fair to the other
family members” or “The family is always intruded upon and dependent on
other people — educators, therapists, doctors, social workers, and
insurance companies.”
And when these imagined fears enter reality for many people — when it
is their unborn child who has the disability — those children die.
Even some “pro-life” states with laws protecting unborn babies
include exceptions for children with severe fetal anomalies. New “cost
effective” screening methods and technologies mean more children with
disabilities like Down syndrome are being identified earlier in the womb
— when abortion is considered “safer.”
That Better Knowledge
There are a number of ways the disability community and parent
advocacy groups are combatting this murderous prejudice. But in all
likelihood, you are not currently parenting a child with a disability or
a member of one of those groups.
And you can still do something. People will say you don’t understand
and have no right to “judge” what somebody else does. But God may have
given you the privilege of saving a little life regardless of your
experience or first-hand knowledge of disability.
You see, knowledge of disability is helpful, but it cannot change
hearts to be tender toward a vulnerable baby. Experience with disability
also doesn’t always lead to appreciation for the value of that little
one’s life. Dr. Emily France and her colleagues considered the issue of
parental experience and concluded, “The nature of a parent’s
experiential knowledge did not predict whether they continued with or
terminated their pregnancy (of a child with a fetal abnormality)”
(Health Expectations, 2011, Volume 15, Issue 2, 139).
Christian, what you have is better than knowledge or experience: You
have Jesus Christ. When you hear the hard news that disability has
entered a family, don’t begin looking around for somebody else to enter
their pain. Let your first response be to God, “Here am I, send me!”
The Confidence You Need
Now you might be thinking, “But I don’t know what to say.” Maybe
that’s what they need. Remember one thing Job’s friends got right. “They
sat with him on the ground seven days and seven nights, and no one
spoke a word to him, for they saw that his suffering was very great” (Job 2:13).
More importantly, Jesus has promised you:
But the Helper, the Holy Spirit, whom the Father will send in my name, he will teach you all things and bring to your remembrance all that I have said to you. Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. (John 14:26–27)
Raising a child with severe disabilities is no picnic in this culture
that prizes ease, beauty, and wealth above character, persistence, and
conviction. But our family joins with other Christian families
experiencing disability to say that God is faithful even in the midst of
the greatest pain and suffering. My son, and every child who comes,
regardless of his or her physical or cognitive abilities, is valuable
because God made them.
So when the news comes to a friend, a family member, maybe even your
own child, remember the God who made you alive when you were dead in
your sins. Remember him who calls us to do hard things out of love and
who promises to be with us every step of the way. Ask him to help you.
Then pursue the mother and the father in love and hope, for the sake of
the baby, for their faith, for God’s glory, and for your good.
(John Knight)
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