2. Mothering A Child With Mental Retardation
“Your boy is mentally retarded from brain damage at birth.”
No! I didn’t want to hear that. It set me reeling. How could I go home and tell this diagnosis to my husband: that this beautiful third son of ours, with the huge brown eyes and soft brown curls, would not develop as we thought he would? From the time of his difficult birth until this diagnosis we struggled while we feared the unknown. At 18 months of age the doctors believed they could observe him in a hospital for 30 days in order to diagnose the reason he was not developing as considered normal. We couldn’t understand his behavior and were confused. Now there was a diagnosis. It scared me.
Once my husband and I recovered from the shock and disappointment of the diagnosis, we committed ourselves to helping him. We were told his brain had been damaged from a lack of oxygen during his birth, and he would not develop beyond a third-grade level. At least, knowing his prognosis, we could pray and plan how to go forward on this unfamiliar journey. We had planned to have a large family and took time to seriously reconsider this option after accepting our son’s diagnosis. Although we were devastated by the sad news of our son’s condition, we prayerfully concluded that we would go ahead and accept the children God would send us. We were assured that our son’s disability was in no way genetic.
Chris Montesano 1 year
During that third difficult pregnancy I had worried that something might be wrong, and had made a deal with God. I offered to raise this child to be a priest if he would be born normal and healthy. When I had been 7 months pregnant, I had been rushed to the emergency room going into premature labor. To stop the labor and prevent a premature delivery, I was medically treated. A good friend, years later, commented, “The doctors should have let nature take its course instead of interfering.”
There were years of confusion and frustration in raising this son, and when he was 7 years old he began living in distant special residential schools to provide him with the best education possible. There were many shared tears between my husband and me as well as with our other children, over the trials of separation from this boy. It was very distressful. Each evening we prayed as a family for guidance and comfort, and for success for him.
When he was 15 he came back home to live with us. There were terribly hard times as he expressed yearnings of wanting to be like his siblings. He wanted to date, to drive a car, to go to college, to earn money, to marry and have children. It was heart breaking for all of us, knowing these desires would not be attainable for him.
When he was 18 years old his father died suddenly, and he suffered through grief and anger. My youngest child was 5 years old when my husband suddenly died, and the others ranged in ages up to 20. As I struggled with financial hardship and a grieving family, I made decisions which confused him even more. I had to sell our house, get back into the work force, and enrolled him in a residential program nearby. He resented being separated from his family again, and lashed out as he was moved from program to program, while experiencing confusion, despair, and loneliness.
The children all missed him while missing their father too. If ever there was a deep valley, this was it! There were many times when I felt inadequate as well as lonely. At night I cried and prayed for strength and guidance in making decisions for my children and myself.
Numerous programs, various attempts at employment, and ever-changing housing arrangements proved unsuccessful for my handicapped son. He was often abused, ridiculed, and taken advantage of. Life seemed hopeless to him.
Then my oldest son offered to be his brother’s caretaker and try to develop a better life for him. They got a home together and began making plans while setting up boundaries and expectations. Gradually I saw my handicapped son accepting his limitations while working on attainable daily goals set by his brother. Together they found ways to let go of old dreams and discover new ones. He was allowed freedoms and opportunities which I would have been too protective to offer him. His life seemed to finally turn around, to slowly take direction, and to produce happiness.
I’ve watched him accept himself and be happy to take one day at a time, and to handle disappointment better.
At the age of 44 he helps his other with yard work, household chores, and maintenance of their mountain home. He likes to go fishing and walks a mile to get the mail each day. When he has the opportunity, he enjoys participating at Mass in the church community where he feels welcome and accepted. He’s a member of Faith and Light, which is an international spiritual movement supporting developmentally disabled persons. He truly practices unconditional love, is kind and considerable, and seems to be spiritually sound. For two years he volunteered at a local nursing home where he felt needed, loved, and respected. He received several awards for that service, which mean more to him than money actually. His self-esteem has been helped by the praises and appreciation of the facility’s staff and patients.
My son’s personal priesthood seems to have been anointed by God. My original prayer for a normal, healthy child was answered in ways more awesome than I could have ever imagined. This son has touched many lives as he simply loves God, himself, and others.
I’m glad his life was saved in the emergency room when I was 7 months pregnant, rather than “let nature take the course it was taking.” Grateful for his life, I realize he brought humility to our family, as well as a special education for each of us. We got the Special Education! His journey is our journey.
Chris Montesano at 45 years