Caring & Hurting

She looked so exhausted. Her haggard face told the story of her long journey as a parent of a child living with a developmental disability and the suffering that goes with it. Her body bowed under the weight of all those years of exertion. She told me of her daughter, now in her 50's, born with mental retardation. It was a tale of love and pain, caring and hurting - a lifetime of supporting a child with the mind of a toddler, who grew up unable to navigate the complex world in which we all live without 24/7 assistance.

She was obviously beyond frustrated, defeated by a system seemingly designed to confound her every attempt to arrange for proper care for her daughter. Housing, caregivers, health care - in all these areas and more her daughter kept falling through the cracks. She had done everything she could; long years of working nights and caring for her daughter days. When there was no local day school for special needs kids, she and her husband helped create one. When she lost her husband to cancer, she kept soldiering on alone. When her child was abused she did what she could to protect her. She liquefied her assets and bought a home for her. Now she was having problems getting competent, caring caregivers for what she could afford to pay. But due to property values dropping she didn't have the flexibility to sell her home or her daughter's condo. With dwindling resources, and looming challenges - she was stuck.

She was looking into the future and seeing that her time was running out. She was feeling panicky at the prospect of leaving her vulnerable daughter in the world alone - unable to fend for herself. She was looking for answers and finding there were none. At least, none that were acceptable to her as a loving parent. All she wanted was to feel secure in the knowledge that her daughter would be safe and well cared for after she was gone. But she was starting to think this was a dream that had no hope of coming true.

I asked her about the faith communities in her area, did she attend church? Did she have the support of a faith community? She told me she had no use for churches. She believes in the Lord, but she listens to preachers on the radio. I asked her why, and she told me she couldn't take her daughter to church because she was too loud and restless. She also told me that she called all the churches in the valley where she lives when her daughter was injured and could not walk. Her daughter was an adult at that point, big and heavy. She had injured herself moving her around alone. She needed help. She reached out to the local churches in desperation, but she said they did not help.

As a Christian, it made me sad to hear about her experience. But as the mother of an autistic child, I'm sorry to say - I was not surprised. She's hardly the first parent to have such experiences, and unfortunately she won't be the last. I've heard many a similar tale. In our superficial world, a person with special needs is often treated as an unsightly thing to be hidden away. We live in a world devoted to perfection, and even we Christians can get caught up in worldly values. But Jesus Christ had a different concept of perfection than what we usually see valued in the world.

In Matthew 19:21 Jesus said, "If you want to be perfect, go, sell your possessions and give to the poor, and you will have treasure in heaven. Then come, follow me.”   

And in James 1:27 we were told, "Religion that is pure and undefiled before God, the Father, is this: to visit orphans and widows in their affliction, and to keep oneself unstained from the world."

No guilt, but that IS what the Bible tells us. So what could I do to help this woman? Can I solve all her problems? Can I single-handedly change the world she and her daughter live in? No. Of course not. But one thing I can do is not turn away. One thing I can do is listen. One thing I can do is empathize. One thing I can do is share their story. One thing you can do is read their story. One thing we can all do is pray for them and others like them. One thing we can all do is ask the Lord to guide us and show us how to help folks like them.