Sophie did not sleep well. When she finally decided to get up, she wondered if she had slept at all. Felice haunted her dreams. The sun was just beginning to rise when she went downstairs to make coffee. Helen, never an early riser, was sitting at the kitchenette working a Sudoku puzzle.
“Hey, Girl, you’re up early too. Have a lot to do today I imagine.” Helen greeted her warmly.
“I couldn’t sleep, so I finally decided to get out of bed,” Sophie confessed.
Helen started to rise, thinking she would cook breakfast for the two of them, but Sophie insisted that she wanted to cook for Helen. They compromised, and Helen made coffee.
“I am going to miss having you around one-cet you move. I’ve enjoyed having company in the house all these weeks.”
Sophie assured her that she would still be a regular visitor.
“It gets awful lonely, even though my kids are really good about coming around and helping me out. I get out and all, and I’m glad I can still do that, but the nights get long.”
The aromas of bacon and coffee filled the room as Sophie started warming up the cast iron griddle on the back of the stove. She knew Helen was often up at night, puttering around, as Helen called it.
Helen raised six children of her own in this house, and a nephew she took in. She shared her bed with her first husband, who built the first addition to the simple wood frame, and with her second husband. She outlived them both. The walls had soaked in a lifetime of memories, laughter and tears. Now those same walls betrayed her as often as they comforted her, closing around her to enforce her loneliness in her old age. Having Sophie and Owen around strangely intensified this loneliness, which before had become a dull butterknife at her table and now cut like a honed blade. Her children tried to convince her to move to the Retirement Community—they don’t call them nursing homes anymore—but she would have nothing of it. Her mind was still sharp, and she watched too many of her friends deteriorate rapidly after moving from their homes.
“Getting old sure isn’t for wusses.” Helen moaned as she sat down again, balancing on her walker.
Sophie was mentally surfing for ideas that might improve life for Helen. She had grown very fond of her, and realized she was going to miss living here too. She put the plates on the table and sat down as Helen reached to take both of Sophie’s hands in hers to pray. No short memorized prayers for Helen. Sophie envied the ease with which Helen prayed, as though God were sitting in the chair next to them. She chided herself, that one who was a pastor and who had been to seminary would be better at this.
“Good morning Lord, and thank you for this day and for my friend Sophie. Lord you know how much I’m going to miss having her with me, but I ask you to bless her and Owen in their new home and fill it with children, laughter,tears and comfort as you have filled my home over the years. Give my love to my little Marty, who left us to be with you thirty two years ago today. Bless this food, that we may….. that we….”
Hearing Helen’s voice tightening around the prayer, Sophie continued,” that we may be strengthened for this day. Amen.”
“Amen!” Helen squeezed Sophie’s hands. “Let’s eat!”
Sophie cradled her coffee cup as Helen poured.
“Was Marty your—“
“My son. He died thirty two years ago today. He was my caboose, what we used to call a change of life baby. We were blessed to have him 14 years, three months and twenty one days, and he gave us joy every one of them.”
Sophie never heard this before, and grew still as she recognized that she was standing on holy ground at this moment.
Dr. Skarsten said I shouldn’t have this baby at my age, that the baby could be deformed somehow or I could have a hard time. I had already given birth to eleven babies, and I figured it couldn’t be any worse than any of those, and besides the horse was out of the barn so what was I going to do about it now? Years later I realized he was suggesting maybe there was something I could do about it, but I could never have done such a thing.
He was such a little peanut when he was born. I was driving the school bus back then, so I just figured all that jostling up and down and bumping on gravel roads must have moved things along with him. I had every one of my babies right here in this house. Everyone had their babies at home down here because it would take so long to get to a hospital you would have already had the baby by the time you got there. Dr. Skarsten was the only doctor we had, and he had a room over his garage where he would do surgery in an emergency. He was getting up in years then. He delivered every one of mine, all thirteen of them. That’s right. I had six that lived, four that was born dead, and three that died being born. All my husband had to do was hang his pants on the bed post and I turned up pregnant.
The first time I got pregnant I was so ignorant I didn’t even know where the baby would come out. We weren’t bad kids, but we were just playing around like kids sometimes do. Doyle was a three years older than I was, and I was 15 when the baby was born. He should have known better I suppose. But when it all came out that I was pregnant, Doyle offered right away to do the honorable thing and marry me, and he was always a good and kind man. Mrs. Benson was the one who figured it out. She was the pastor’s wife, and let me tell you she did about everything around here. I passed out in church one day, it was so hot. She took me down to the basement and cooled me off with a wet dishtowel. I don’t know what it was that made her suspicious, but she started asking me questions like did I get my period yet. She took me home and explained my situation to my parents, and then she made sure I was taken care of. They wouldn’t let me go to school anymore, but she would come to the house and give me lessons. Dr. Skarsten suggested I give the baby up for adoption, but Doyle would hear none of that. Mrs. Benson was my savior, and I thank God for her to this day, and prayed that someday I could help someone as much as she helped me. So that’s how my Marlene was born. She and I grew up together, you might say.
Poor Eddie didn’t have it so good. She don’t even know that I knew about her being pregnant the same time I was. Her daddy wouldn’t let her go to school after that, and she was never out of the house when she was pregnant. Miz B, we always called Mrs. Benson, took my maternity clothes to give to “a needy mother” and let it slip she was going over to the Kovach’s. I put two and two together. I don’t know whether the baby died or she gave it for adoption because I never asked, and I’m not going to.
Doyle went to work at the mine, which is probably what he would have done anyway. He got that black lung, and was already getting pretty sick before Marty was born.
Marty looked different from my other babies. Doyle later told me he wondered if Marty had the same father, but he knew I was faithful. Later, when Marty started having other problems, Dr. Skarsten told us he was mongoloid. That’s what they called it back then. He said he would never grow up, and it would be best if we took him to The Home where he could be with others like him and they would know how to take care of him. I may not have finished school, but I knew that anything they could do with Marty I could do. He said it would be more humane, that raising a child like this would ruin my health. Nothing could be more inhumane than a child not knowing its mother, whether retarded or not. I can’t say Marty ruined my health any more than anything else did, and I’ve lived a good long life. I had five older kids, and I always raised them to help each other out. They helped out with Marty too. I never thought of him as a burden, not even after Doyle died with the black lung. I just didn’t know his time with us would be so short.
So I got myself busy. Here was my chance to give back to others like Miz B had given to me. I knew there were other children like Marty scattered around, and I knew they could learn some things if you just had patience. I went to the school board and started asking questions. There was always some excuse or another about why nothing could be done for our kids. It always seemed to come down to money, which never seemed to be a problem for football and basketball. So I started knocking on doors. I think I was on the phone with our state representative about every week there for a while. He’s the one who told me I needed to learn to write grants, maybe just because he was tired of me calling. So I went to a workshop up in the Capital, and stayed in a hotel for the first time in my whole life. I met some people there, and they invited me to come speak at a conference on disabilities and the schools. Back here, I found some of the other parents with disabled kids and we started the first Board for Disabilities in this county. We got the school to open up the old Maple Ridge school they had closed, and we started a school program. Marty would ride around on the bus with me, and that helped me make a case in front of the school board that we could use a school bus to pick up our kids so their parents wouldn’t have to bring them and both parents could have a job during the school day. Then once we got the school program going, I began to think about some of our older children. We had three boys who were about to finish school, and then what? Go back home for the rest of their lives? I got the parents together, and we made a list of all the things our kids could do and were doing by way of chores around the house. They just needed someone to teach them. We had a girl out at the school who did student teaching with us, and I wanted to hire her back to be what they call now a job coach. Of course I didn’t have no money to offer. So we made an appeal to the churches for start up costs and volunteers to take the boys to their jobs. Of course, I didn’t have any jobs for them yet, but I was bound and determined to find them some.
Well, you know no good deed goes unpunished. The economy was worse than usual, and some people got on their high horses and said we were going to take jobs away from productive men supporting their families and give them to our boys. You know who was at the head of the pack? Mr. Suit and Tie himself, our own Mr. Mooney. It was all I could do to sit in the same church with him on Sunday mornings. I understand where he was coming from, since I was a widow raising my last two children on a school bus driver’s wage. We weren’t talking about no jobs that a person would support a family with though. We were talking about bagging groceries at the IGA, delivering packages for the pharmacy, stocking shelves for the Five and Dime, cleaning floors at the courthouse in the evening.
Talking to Mr. Mooney got nowhere, you know how he is. So I took it upon myself to go talk to Mrs. Mooney. You didn’t know there was one, did you? She passed on here almost ten years ago. She had cancer. That’s when she told me that they had a baby like mine, but a little girl. She had some problems with her heart and didn’t live but a few hours. I don’t know how I didn’t know about that, because there’s not much that happens in this little town that I don’t know about. I knew they had a baby who died, but a lot of us did.
You could have blown me over with a feather when the next week I open up my mail and there’s a check for $12,000, signed by Mrs. Mooney. I didn’t know they had that kind of money, but I just said “Thank you” and took it to the bank. We started a small business, since the schools wouldn’t support it, and we called it “Job Ability.” Eventually when it grew we were able to get the state to step in and sponsor it. We went from business to business with our list of things these young men could do, and though some of them shut the door, others didn’t. So that’s why the baggers at the IGA are our kids, and the custodian’s aide at the elementary school, and everywhere you look. They aren’t kept at home anymore or sent up to The Home. They are part of our community, and they are good workers. We may be a small town, but I think that’s why it works so well. Everyone keeps an eye out for them.
I know I said we all had lost some babies, it seems. People always talk about Appalachia like we’re too stupid down here to do anything except go down in the mines and make babies. We’re not stupid. I am really amazed that any of our babies survive when you look at the conditions some people live and work under. The nearest hospital is almost an hour away, even now. Dr. Skarsten was the best we had. There was always a rumor that he wasn’t a real doctor, just an army medic who came somewhere that had nothing better and started calling himself a doctor. He sure did like his war stories, so I can see how you might wonder. One way or another, he had a good heart, and he stayed with us when some other doctor might have left town the first chance he got. When my fourth baby was still born, I never got to hold him or look at him. Dr. Skarsten just took care of it, saying it would be better this way. I wish I knew where they buried my babies, the ones I lost. I never thought I would say this, but I don’t know how Doyle and I would have raised them all. Wesley was a good man to marry this widow with six children, and one of them like Marty. I don’t know what he would have done with twelve or thirteen of them.
When I look back on everything that happened in my life, it’s hard to imagine how any of us got through it. But we did, and it has been a good life. It’s difficult to imagine that I am this old. I don’t feel old, except my parts are either replacement parts or wearing out now. I still wish there was something good I could do, until the good Lord says it’s time to come home.
There are families and individuals like Helen everywhere. Down Syndrome is one of the most common genetic conditions. It is not rare. What is rare are the people who had the courage to step –sometimes literally–in front of the bus and make a difference in their communities for those who live with Down Syndrome and other genetic disorders. Helen’s story not only really happened, in one small town after another, it is also true. There are people who ask “Why?” and they work tirelessly to find causes, interventions, and to change the outcomes. There are those who ask “Why not?” and they work tirelessly to find opportunities, to change hearts, to change the world for even one person. When we are invited into their stories, their griefs, their joys, we are standing on holy ground.
For an inspirational, short video about people with Down Syndrome, please click on the following link: