It’s not that I don’t love Mitch, it’s just that I had other plans. I wanted to work in the anti-abortion field. I wanted to be a dental assistant. I wanted to get my degree in fitness and nutrition. But Mitch was born, and I had to be responsible. I had to step up to the plate. Mitch is a severely disabled adult who was born with an arachnoid cyst on the brain. Since his birth, my life has revolved around caring for him, and trying to fit my other children in there somewhere.
What is normal?
Is living with a child who is constantly acting up normal? Is brain surgery after brain surgery normal? Even if a person has insurance, how do poor people manage to put gas in the car to make trip after trip miles away to go to the hospital? Then when you get there, what do you eat and where do you sleep? How do you provide a “normal” life for the other children, praying that they grow up to say they had a “good” childhood?
Mitch has an arachnoid cyst on the brain, but the symptoms of his handicap are quite similar to those who have severe autism. So, though the cyst itself is fairly rare, the hardships are similar to those who care for a child with autism. Autism is not rare, and the numbers are increasing.
After decades of government debate and policy, the Supreme Court decision established that public services for all disabled people must provide the most integrated and least restrictive environment possible.(Olmstead v. L.C.)To be honest, often when a family does an assessment of state alternatives for care, many find that they can’t in good conscious turn the child they love over to its care. Therefore, the most loving and least restrictive environment, for many, is home.
Deinstitutionalization has been wonderful, but the visions of modified places to live with a network of support services, has never materialized, and in this economy, it is not expected they ever will. The remaining services of respite care, day centers, group homes and assisted-living facilities are overwhelmed.
The system is so overwhelmed that it is hoped that the family is the best place for the disabled to be, and it often is, but is too often over-looked that caregivers of adult disabled children have higher rates of depression, more ill-health, disrupted careers, broken marriages and other family imbalances.
Who is at risk? – Source:
When I drop Mitch off at the day care, I realize I have no right to complain as I see dozens of other adults in worse shape than he is. Mitch can walk, go to the bathroom, dress himself and is comparatively well off compared to many others.
Mitch is wonderful the way he is, but the future seems so vague and scary. If something happens to me, what happens to him? Where are the people waiting in line to care for him? They don’t exist. Not even the people who are supposed to exist, like his father. They’ve moved on with their lives in hopes of resurrecting a portion of their own life amidst the rubble.
It is scary to think I have to rely on the state to care for Mitch when something happens to me. I’ve protected him from institutionalization for a reason. I don’t trust their ability to love him. I don’t trust them to use pharmaceuticals in a responsible way. Yet, how do I hold on to my life that has been ravaged by stress long enough to make a difference? And what makes us think the state’s programs will even exist once the recession has its way with us – our money used up in endless war?
And why should I think it is right to rely on the state? Where is the family support? What about the responsibilities that religions carry for their membership? Religious entities are self-inclined toward their own survival – more interested in what they can get from you than what they can do for you. Families are more interested in paying their tithes to the self-centered churches than helping needy family members. They hope the churches are helping the needy (strangers) on their behalf. They don’t have a clue.
I have no other choice but to rely on my faith and live for the moment because if I ask too many questions about tomorrow, I will get sick. There are too many questions and not enough answers in the field of the growing population of the disabled and aging. I can only do the best I can today and let tomorrow take care of itself.
Tithing, does it go to help the poor? Source: