my sister Sally...

My sister Sally (Sarah Ellen Temple) had a birthday last week. December 16th. She turned 45. She was born deaf and mentally retarded. I love her. I love my parents for how much THEY love her. I've never really gotten the whole story from my mom. The kind where you sit down and cry, imagining yourself in her shoes, with a disabled child. Disabled for the rest of her life. I think I was afraid. I needed to do it though. For me and for my Mom. The rest of our family too. This is a LONG post. Don't feel like you need to read it. Just know that Sally WILL be whole again. There is no doubt in my mind. This is my Mom's story:

How old were you when you were pregnant with Sally?

I had just turned 27 the month before I had her.

How did you contract German Measles?

I was taking care of a friends 2 children. One night while giving them a bath, I noticed the little girl was covered in spots. It was German Measles, but I didn't worry because I thought I'd already had them...and I didn't know I was pregnant yet.

Were you wanting to be pregnant?

Not necessarily. We weren't trying to, but not trying not to.

When you realized you WERE pregnant, did you panic?

Not too much at first. I went right to the doctor to get a pregnancy test. I WAS pregnant. He asked if I wanted an abortion. I was horrified. He said they offered that as an option during the 1st trimester of mothers with German Measles. It was not an option for me. I had worked in OB, I hadn't really seen many abortions. I had what they called migratory arthritis at the time along with the spots that showed up about 2-3 weeks later.

He told you that birth defects were a very real possibilty?

Yes, almost a probablilty. He told me what the possibilities were, but I never thought she would have 2 or 3.

Did you and Dad talk about all the possibilities, all the things that COULD be wrong?

The doctor said she could be mentally retarded, deaf, blind or have heart defects. I think we really knew deep down that something would be wrong. I was very anxious for her to be born so I could see if anything was. She was a little later than some of my other babies had been . She was only 4 pounds 10 ounces, yet she was post-mature. She was wrinkled. She had tiny broken capillaries all over her skin. They called it Blueberry Muffin syndrome.

When did you know something was wrong?

We knew something was wrong when she was born. They kept her in the hospital for 5-6 days right after she was born. I stayed with her the whole time. At about 6 months old, they knew something was wrong with her heart. At about 3 months old, she had a horrible staff infection on her neck that had to be lanced.

What IS wrong with her heart?

She had a Patent Ductus Arteriosis. She had to have it surgically corrected when she was 2. The day after her surgery, she was standing up in her crib.

Is that why Joe when into pediatric cardiology?

It could be.

How old was she when you realized she wasn't normal?

We thought there may be a problem with her hearing when she was a few months old. She didn't respond. She did when you clapped though. Like there was a difference in air pressure or something.

Did you have her hearing tested?

The first time we took her to Duke, she was about 18 months. They could test by electrical pulses or something. They said she was hard of hearing but not deaf. She wouldn't chew. We KNEW more was wrong. We took her back to Duke and had her tested for mental retardation. They said NO, she's not mentally retarded, she is profoundly deaf. By this time she was about 2. We went back again to have her hearing tested. They said her hearing was fine, but that she was grossly mentally retarded.

When she was about 3, we took her up to Philadelphia to a clinic for children whose mother's had had German Measles. The doctor there was Mary Ames. She spearheaded the whole thing. All sorts of specialists examined her and would discuss what they had found and what the real diagnosis was. They never really came up with one though, except that they suggested we get a hearing aid for her when she was about 3. It had a battery pack attached to a harness on her chest. When she got older, about 8, she would throw them down the toilet. We probably bought 15 hearing aids.

Did you notice a change in her once she could hear better?

No. We wanted to, but not much. We wanted to fix everything. It was very frustrating. The hearing people said she wasn't deaf, but mentally retarded, and the mental health people said she wasn't retarded, but severely deaf. We took her to the National Institute for the Deaf in St. Louis. We drove her all the way there because we were told she was aphasic (had lost speech or language) which was odd because she never had it in the first place. She needed to be tested. They said she wasn't aphasic, but was severely mentally retarded.

Right after that, when she was about 4, we enrolled her in a clinic through the mail. It was called the John Tracy clinic. It was like a school by mail for parents of deaf children. Puzzles, matching, coloring. I did it with her for about a year. At least 2 times a day for at least 30 minutes each session.

Did it make any difference?

I think it did. I think it helped her to use as much of her hearing and mental ability as she could. She didn't start talking or anything like that. She could say a few words like momma, dadda, ball. Also when she was 4, I took her to the North Carolina School for the Deaf. A woman that worked there had a friend with a dancing school which we enrolled her in for about a year. We wanted to get her into a normal preschool at the Episcopal church. They wouldn't take her. Marybell Hennock, who ran the dancing school, wrote a letter to the owners of the preschool. A beautiful, beautiful letter. They decided she could come if someone other than me could stay with her the whole time. I found a really nice lady who said she would go with her. Only for about 2 months though, then they realized she didn't need an assistant. We didn't even pay her. She was such a nice lady.

Did she like it?

Yeah. She loved it. She felt like a big girl. She was well behaved. But before long we started to feel that she wasn't making any progress. She wasn't old enough to be enrolled in the school for the deaf full-time, so we took her to WVa. Dad got a job there because we had heard that WVU in Morgantown had a great school for young deaf children.

Did the older kids resent having to move?

I don't think they even knew that was why we moved. We just told them Dad had a new job. They missed out on a lot of my time while I was doing things with her.

It was a horrible drive to the school. A white-knucked drive. She was 5 years old. We took her 3 times a week for a few months, then realized that wasn't working either. It wasn't a great program. It wasn't what they advertised. Noone knew what they were doing. It was very sad.

So what did you do?

We went back again to Philadelphia to the children's hospital. They said she needed an in-house treatment. With 3 other children, it was too hard to have routine. If she went to a school, she would be capable of learning. We were told Elwyn was a great place. They instantly said she was too handicapped, we can't take her. We were just sick. I had an aunt, Aunt Kate, my father's sister, who was a nurse at Jefferson in Philadelphia who knew a doctor on the board at Elwyn. She called him and had him intervene. They knew we were all the way in West Virginia, so they said "OK...you come this weekend and we'll look at her." They thought we'd never do it, but we did. After her assessment, they wrote to us and told us that if she could come as an outpatient, they'd take her (again, they thought we'd never come). I called Mother and asked them if they could keep Sally, if they could take her an hour to school every day. She said, "Let me talk to Daddy, I'll call you back." They said sure. She started. She liked it OK. It was a fantastic place.

What was it for?

Any handicap. Deaf, blind, mentally retarded.

How long did she stay there?

She was a day student for about 9 months. Then they said she could come in the summer as a trial to see how she would do as a boarding student. Mother said they just couldn't be the ones to take her. They didn't want to see her crying and sad. So we took her the first time. She wasn't sad the first time though. She didn't know she was being left there. After that, she knew. Mother said it was the hardest thing she had ever done. She would look in the back of the car and see 5 year old Sally, not crying out loud, but with a trembling mouth. She would stay for a week, then go to Mother and Daddy's for the weekend. Sometimes we would go get her too. We knew they would accept her and she would do OK. We decided to find another job. That's when Dad found the one in Dover which enabled us to have her home every weekend and for holidays.

When did she become difficult at home?

Probably not until she was 11 or so. Dad and I had a concert to go to. Mother and Daddy came down to stay with all of you. You younger kids were born by then. It was Easter. We came home, and I asked how everything was. Daddy said, "Not too good, Sally pushed your mother down the steps." I was shocked. They were like parents to her.

How did you respond?

Nothing had happened. She just got mad at her. Mother was OK. It was just shocking. It was unbelieveable. From then on, she was very, very different. We think she may have been abused, twice, at Elwyn. She was obsessed with pointing to her tummy and saying "no baby." We took her to a psychiatrist later and they were sure she had been. She would bite herself and pull out hair. She would draw blood. She would have to get tetnus shots. One day she broke a picture frame and cut her arm. She may have been about 12. She would sometimes have 4-5 aggressive episodes an hour. They would have to put her in a straight jacket.

Were you worried she would hurt one of us younger children?

Yes. She once pushed Rachel out of the swing. She was trying to hurt her. She was destructive and very angry. From then on, you younger four were intimidated by her.

(I *Amy* remember feeling worried when she would come home for the weekend. Would she try to touch someone's eyes? Would she shout in public? I was intimidated. Maybe even scared. I remember liking it better when she didn't come. Then something changed. It was gradual. The more we visited her at Stokley, the more comfortable it got. The more we could joke around with her and the other patients. Because of that, we, as children were more accepting. I came to love mentally disabled people. Love them. Enough to seek a job with them and find a partner who loved them just as much as I did. Sally may just have had a hand in me meeting my Dave.)

Did you regret sending her to Elwyn?

No. When she grew too old for Elwyn (21), we sent her to the Stokley Center here in DE.

What was that like?

It was hard. The patients were more seriously handicapped.

This was your baby. Were you angry?

I think I was first angry with the Lord that this would happen. Right after we joined the church though, the missionaries taught us about blessings for the sick. I really thought she could/would be healed. I remember fasting. She didn't get better.

We think she was molested at Stokley. They found a belt buckle mark on her backside. She was anxious and angry.

Did you want to remove her from the school?

I always wondered if I was doing the right thing. But, my patriarchal blessing told me we had done the right thing for our daughter. The patriarch didn't even know us or our situation. I would refer to that blessing alot.

There was a doctor years later who said she didn't even think Sally was retarded. Then I think... oh my word, have I put my child with all these mentally retarded people when she's not? Did I do the right thing? Should I have kept her at home? She sent us to another psychiatrist who said that was wrong. She was retarded. Dad and I think she may be mentally ill as well. Schizophrenia or something. She has medication to help her with that.

When you learned of the gospel and resurrection, what did that mean to you?

I can't even tell you. One night I was having a prayer, and it just came to me like a flash...we will see her perfect. If we are worthy. We could know everything about her. It was that extra push to get there. I don't think she is unhappy anymore. I can remember going down to visit her with Barbara Badell, sobbing when I left. She liked it there and I just couldn't understand it.

What is your relationship with her now?

Not what I would like it to be. I don't feel like I know her as much as I would like. I would like to feel closer to her. You don't talk much when you are with her.

Dad and Caroline are very protective of her...like they are connected...

Yes, Caroline in particular. Sally has always been the underdog, and Caroline is always protective of the underdog.

I know this is a silly question, but how do you and Dad feel about her?

Protective. Um, thankful. Thankful for what they have for her. She can be a human being. She has a job. She is a productive member of society. I wish I knew her though. What her needs were. I don't think we're able to meet her needs like our other children, it's not the same. She's taught us a lot. We are more compassionate, less judgemental. She's taught me about unconditional love. What the Lord feels for each of us. You don't have to do anything, be anything, you don't even have to interact. There is a bond that is just there. Always.

Do you wonder what life would be like if she had been born "normal"?

Oh yeah. Maybe she would have kids. What would they be like? But we're not to know that now. She is very happy with her life. It is a simple life, but it is hers and she is happy.

As a mother, how do you cope? How do you deal with a child who is disabled? How do you come to terms with it?

You just do. You know its your child. You love them no matter what.

Sally and her little sister Amy - October 2009