When No Experience is Needed

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)