An article appeared this week in The Clarion Ledger interviewing the mother of a young adult son, who had been injured in a motorcycle accident leaving him paralyzed as a quadriplegic. The quote that caught my attention was, “You don’t just throw away your child because he is broken.” The word broken spoke to me. Certainly at the birth a child with Down syndrome, the “wrong chromosome count,” and few too many associated birth defects, he or she seems like a broken baby to its family! Not only might the baby be broken, but the life you envisioned for yourself, your spouse and even your other children, seems certain to break. This same mom went on to say though that as time passed she found herself falling even more richly and deeply in love with her new son. Can you identify???? 

When Maura, our daughter, was born, we certainly all felt the entire avalanche of emotions. Her birth proved to be premature, with our oldest leaving for college the next week…what a dizzy time! Sadly, she had all of the associated defects so the medical dominated the entire first year plus. There proved to be many near death and dying times for Maura which she miraculously navigated. In an odd way this proved to be helpful….our focus shifted from what we perceived to be the devastation of Down syndrome to the concern of whether she would even stay alive for us to experience that slice of life! MAURA became the healthier focus and not her diagnosis thanks to her fragility. Once her heart had its final repair she bloomed and so did we! The falling in love and appreciating each hard earned milestone was indescribable. She demanded much care, sacrifice, attention, etc…but those demands proved to push each one of us to be more other centered. I know with no reservations that Maura created a better family thanks to her presence and the good work she required of us. 

There have been many tender moments along the way. Pearl S. Buck calls this “inescapable suffering.” Our culture demands achievement, beauty, stature, etc., as its definition of value. We live in this culture and we all feel its effects. There have been many natural moments where this is exquisitely tender. Once, my children heard the grandmother of a fellow special needs child, in their ear shot state, “I sure hope ____ (our child), can do more than Maura.” I can recall Kindergarten being a somber time. All the children also born that year were heading off to school, REAL SCHOOL, but we were not. Most kids with DS are “higher functioning” than our Maura. Apparently that awful medical year exacted a steep price. 

As time passed, we heard a compelling argument offered in support of more children after a baby with DS…..the child would need a bigger cocoon of love! Probably the child with DS would outlive his/her parents, and the larger the sibling cocoon, the greater the love and the more sharing of any responsibilities. Good logic! We realized too that we were utterly in love with this “broken daughter” and if more of her came along, welcome! We also later began to appreciate that the highest compliment we could pay our daughter was to have more children. This was the faith equivalent of saying boldly, you aren’t so bad after all!!! Maura provided us too with a sobering look at the term handicapped and it was suggested to us, that we ALL are handicapped, marred by sin! How true. And yet, through the eyes of faith, we know that of all our children, Maura is the only one guaranteed Heaven! Would we not desire such an assurance for all of our “whole children?” 

If you find yourself as new parents or brothers and sisters timidly welcoming your new addition, who comes perhaps “broken,” allow yourself to be human. This will pass, you will fall deeply in love. God will provide the graces, the people, the intuitions you need to parent this new child. S/he will be a profound blessing to your family, and yes, there will be great sacrifice and great pain at times. There also will be great joy….and eternal life for this child who in his own way, is guiding you towards Heaven! 

Be of good courage! 

Vic & Gerry Gray-Lewis 
Email: Gray-lewis@juno.com 
Phone: (601) 981-9530