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A Story of Hope for Parents with Children with Developmental Disabilities

Carissa Rogers

Christine de Marcellus Vollmer - published on 12/24/13 - updated on 06/08/17

Our little Leopoldo had serious neurological impairment. His fourteen years with us revealed God to us in a new way and changed our lives for the better.

This is the text of a talk given at the Family and Life congress at the Vatican in 1997.

I would like to speak to you today as the mother of a child with neurological impairment. I will endeavor to express something of the profound existential shock resulting from the birth of such a child and of the enormous blessings which can result from the acceptance of what at first could seem an insurmountable misfortune.

The greatest fear, deep in the hearts of young parents, is that their child could be born with some kind of impairment, that is, not be “normal”.  Indeed the first thing that young mothers do when their babies are born is to check that everything is there and in place.   Their greatest joy is seeing that the baby is a clever baby and is meeting his milestones on time, or before he should.  I do not believe that this is a result of an overemphasis on brains and achievement but that this is a deeply ingrained protection, meant to be entirely to the benefit of every baby born into the world.

Thus, when a baby is born, as our Leopoldo was, with damage to the brain due to perinatal trauma, genetic causes, or from infection or deficiency in the course of the pregnancy, it hits the parents as the most profound and terrific tragedy which can occur. Most young parents manage to hide their utter grief with great courage, and their anguish is concealed beneath the activities the baby demands: tests, examinations, therapy, etc. Others deal with their distress by excessive hope, and imagining that their baby will “grow out of it”.

But in fact the deep pain felt at this time, like all pain, is necessary to prompt these parents to action. Just as the function of the sharp pain of a burn is to trigger a fast motion to save the burnt member from the heat, so the all-engrossing distress of a sub-normal baby has as its function a radical change in attitude of the parents, who must abandon the usual attitude of parents, who watch, admire and assist the development of their child, and instead assume one which is aggressively pro-active. They must at this point become very different, and develop all kinds of talents they were quite unaware of.

These parents, from all walks of life, are at that point required to mature in ways they never imagined, and overcome the existential hurdle of dealing with a frightening and emotional situation for which they are not prepared and which will not “go away.” Thus young parents are required to learn the latest in neurological terms, forms of treatment, and how to deal with the psychological difficulties within themselves, within their marriage, among the siblings, and even arising among their neighbors.

Until recently, neurological impairment, like illness and premature death, was considered an inevitable problem that had to be accepted as part of nature’s ways.  In recent years, as many illnesses have been eliminated and early death made comparatively rare, neurological impairment has remained a field which has not advanced comparably and this type of affliction has frequently continued to be considered God’s will and simply to be accepted.

However, remembering the actions and words of Our Lord, it seems evident to me that His wish is to see all children made whole and that their afflictions are allowed by our Heavenly Father in order to “give Him glory.”  It is about the glory which can be seen surrounding these children when they and their parents have the opportunity to confront the situation with hope that I would like to speak today and I trust that you will forgive what could perhaps seem like undue ardor and passion.

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