Burdensome. Sad. Relentless. Hopeless.
These words are attached to disability. And often they are used to "justify" aborting babies with disabilities.
The perceived low quality of life of the child and the unknown-but-assumed hardships that would be placed on the rest of the family are frequently written and talked about. For example:
Many studies show the vast majority of patients abort fetuses after prenatal tests reveal genetic conditions like Down syndrome that are not life-threatening. What drives that decision is not just concern over the quality of life for the future child but also the emotional, financial or social difficulty for parents of having a child with extra needs. (Ruth Padawer, The Two-Minus-One Pregnancy, The New York Times Magazine, August 10, 2011)
A High Privilege
Yet, when I read statements like that to my wife, she responds very differently: "It is the highest privilege of my life to be the mother of our disabled son."
She carries the greater weight of care for our son, and after 16 years she has no romantic notions about what living with disability is like. Nor is she putting on a show — she really loves and enjoys our boy (as do I).
Yes, there is joy involved in parenting a severely disabled child. But we also don’t want to reduce the value of his life to mere sentiment. It is possible for people to affirm that he is a joy to our family, but personally not want to take the risk.
Children Are a Blessing from God
Our culture’s strange ‘ownership’ of the unborn child grants parents the ability to rid themselves of the burden (which seems all too real and overwhelming) even if they underestimate the potential for joy (which doesn’t seem possible in that moment). So the answer is not merely in pointing out the joy, but reminding everyone that children — all children — are a blessing from God.
Because God is both sovereign and good, we can rest in the full confidence of his character and promises as we parent our children, no matter how they come. Disability is frequently hard, but God does not abandon us. And not only are we not alone, but God has promised to supply every need (Philippians 4:19). His plan is to benefit us (Jeremiah 29:11). He will comfort us (Psalm 71:20-21). Jesus himself has sent the Helper (John 14:16-17). The Church will encourage us (1 Thessalonians 5:11).
So, ‘as sorrowful, yet always rejoicing’ (2 Corinthians 6:10), my wife can authentically say with tens of thousands of others in similar circumstances that God has granted and sustains the honor and joy of mothering this boy God has placed in our family.
Let us make sure that side of the story gets told as well.