Faith and the realities of life

When my husband, son, and I began our journey as a "special" family, I met lots of folks who were devastated by their child's situation. We are unique in that we adopted our son, aware of some of his disabilities, but certainly no more prepared that the average special family for the obstacles and trials we would face. The fact that we are a family formed by adoption is the only difference between our family and others who face similar challenges.

Our deep faith has guided every one of our decisions and has formed our perspectives on disability. In light of our assurance of God's love and His desire for all people to experience a full and meaningful life, I have some very rock solid beliefs.

I truly believe our son was not an "accident of nature", but that he is of great value in God's eyes, perhaps of greater value than we can fathom. If I accept that a child born with superior intellectual understanding, great beauty, or talent is a gift from God, I must also accept that a child born with limited abilities is God's gift to this world. That does not mean that I understand "why."

It was very important to my husband and I to teach our son that Jesus loved him, and that he could experience the love of God, and become a Christian. When our son was 8 years old, he asked to be baptized, as he had asked Jesus to forgive his sins. Over the years, some have questioned the validity of this experience for our son, because he could not study the Bible extensively, understanding merely the basics of Christian belief. What I have learned is that a person does not need to be able to "study the Bible" to understand the love of God. We have several copies of the pamphlet "Common Sense Not Needed" by Corrie Ten Boom,and have shared it with many people over the years. She was quite active in bringing the gospel to developmentally disabled adults during the 1930's and 40's in Holland. Ms. Ten Boom writes that those with disabilities have difficulties, but also have "many problems of the typical adult....they do not comprehend; they do not have the solution; but at the same time they are called upon to share the struggle for life." Therefore, they, too, have access to God and His gifts. Those who have developmental disabilities are able to understand the simple truths of the gospel, and are therefore able to participate fully in the life of the church and experience God's forgiveness and salvation.

Now that our son is an adult, there are new concerns for me. He is called upon to share the human condition with all of us, but with limited abilities. I am sure of God's love and care for him, more that I could care for him, but that does not mean that I am any less concerned for his welfare.

Now, he must begin to live his life in some ways separate from us. Because he is an only child, and there are not family members who will be able to care for him should something happen to us, we have elected to place him in a residential facility close to our home. He is currently in a facility in which he has more autonomy that he has had in the past.

Autonomy means that he can live as he pleases, in many respects. I realized that while he was at home, our iron will forced him to live a certain way - get up, get dressed, go to school, clean your room, change your clothes - whereas now, he must be his own policeman. He does have staff support for many hours of the day, but the way he lives his life is largely on his own terms. He is still struggling to become an independent adult. I am struggling to accept that his version of that, and mine, are very different.

However, with that autonomy, I still have the responsibility to oversee his placement, to make sure he is treated well and fairly, and to protect him from individuals who might not have his best interest at heart. This is where the life of a "special" parent begins to sharply diverge from that of any other parent. I am, and always will be, my child's caretaker and advocate. He will never be totally independent. My husband and I must plan for our future, and for his as well, since we have to assume that he will out live us both.

So, who do we choose to take our role when we are gone? How do we plan effectively, so that he will have everything he needs? Will he be loved and cared for after our deaths? I want to plan for my son's life when I am no longer able to care for him. I think this is a quandary that many parents of developmentally disabled adults experience.

I do believe that God loves our son, and has a plan for his life. I wish I could say I am totally at peace with that assurance alone. I'm just not there yet. I am still seeking God's guidance, and the guidance of people I trust, to help us make a plan for our son, for his future and ours, that gives us a complete sense of well being.


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