by Loretta Church Loretta and her clan.

Listen to the sounds of early morning. The birds are chirping while the gentle breeze welcomes the morning. The squeal of school bus tires gathering the children for the fun day ahead. You yawn, stretch, look at the alarm clock and whisper, "Just five more minutes." However, when your child calls out -- "MOM !!" -- five minutes extra sleep will be a treat for another day.

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What mother doesn't delight in cuddling, washing, feeding, dressing, and powdering her child. The soft scent and fresh air welcome a new day and embrace life. Now imagine your child is 24 years old. All the needs of a toddler are now his needs once more. He is Marc, my beautiful son, who is a twin and was born on July 15, 1975. His father and grandmother both have Huntington's Disease. I did not know about this disease 25 years ago. My husband, David 'Firefighter', and I are his caregivers. (David, who is a firefighter, is Marc's stepfather. Marc also has a stepsister, Amber, who is 16 years old.)

My other son Scott, a math and French teacher, is at risk and chooses not be tested.

Huntington's Disease has been an unwelcome visitor in our home since 1998. How does a man go from serving his country and jumping out of planes, to a man-child whose every need must be attended to? The unwelcome visitor seems to take over the household in many ways. It requires physical and emotional energy that exhausts even the strongest spirit. The unwelcome visitor will not go away and the more I want it to leave the harder my life becomes.

How does one accept an unwelcome guest? How does one keep going when the visitor looks ugly, lost, and contorted? The answer is to practice seeing the face of God in Marc. To feed, dress, wash and serve God through Marc. Learning to "welcome" what is ugly and make peace with this horrible disease helps me never to lose sight of Marc's presence and purpose.

Our job as parents is to help our children become independent. We clap and praise our children as they take their first steps. Today, I am grateful when Marc can take one step. The inevitable haunts me like a horror film. Huntington's Disease demands dependence! There are deep days I cannot stop crying. On these days I go into my bathroom, sit on the floor and scream into a bath towel, until the pain is manageable. (I do not want Marc to hear me but I know he does! He sits outside my bedroom door. Marc grieves my emotional and physical.)

His chorea - the uncontrollable movements - has resulted in breaking my foot and cracking two of my ribs. I stroke his face and tell him he has done nothing wrong. Marc really misses going out with his friend for a couple of beers or a cup of strong coffee. Instead his day consists of watching television, listening to the radio but mostly staring into space in the dark. I wonder, what he is thinking about?

Loneliness creeps in the house like a chill. It takes hard work to be involved with life. Going to the grocery store, library, church are now major outings. We do this as a family. Tomorrow going out for coffee will be as much of a luxury as another five minutes in bed.

Photo taken at Niagra Falls. From left to right, Scott, Clark(a room-mate of Scott's), Loretta, Marc (seated), and David.

- published May 11, 2000
originally published by Web of
republished here with permission of Loretta Church

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Prepared for Huntington Disease Advocacy Center, Copyright © 2000.