my dear brother...

December 31st, 1962...this handsome little boy was born. This is my brother Joe, Joel David Temple. Dr. Joel David Temple to be exact. He is a pediatric cardiologist in Pennsylvania. I love him and am so proud of him.

I've been told that he was always so kind to us younger 4 girls, some of whom came along well into his teenage years. This picture of him giving shirtless Tracy and I a ride on his back is proof. I've always had a thing for Joe. Not a THING, but a thing. I've always thought he was just the coolest, and the most handsome thing I've ever seen. I compare everyone to him. You can ask my husband. I will see people on the TV, in the movies, on the street and comment on how they remind me of my brother. I guess that means I don't have enough of him in my life. I only get to see him every 2 years, unless something unexpected happens and we visit 2 summers in a row!

I crave time with Joe. I really do. I think all my sisters would say the same of our only brother. He is FUN! He'll make my mom wet her pants, faster than anyone else can. :) Just listening to him speak or watching his mannerisms makes me laugh. Maybe it's the anticipation of something funny right on the tip of his tongue.

I value his opinion. His feedback on my photography, my children, me. I treasure it. He's said some very kind things to me. Compliments that I'm sure he's forgotten, but I haven't.

He is a great dad and a great uncle. Here he is at the beach with Annie draped around him. Alex was next, then Emily, then Lizzy. He is SO FUN at the beach. Our family reunions in Delaware would NOT be the same if he weren't there. He is the "it" guy. You want to be sitting next to him, hearing what he's saying, laughing at his jokes. He doesn't really tell jokes actually. It's a dry wit. So dry and SO good.

He and his gorgeous wife Thelma are raising 4 boys. They are beautiful, kind, smart boys. My boy adores them. :) He tries so hard to balance fatherhood, church callings and an extremely demanding job. I can only imagine how exhausted he is...constantly.

Oh, lookey here. I told you he must be tired. This was a few summers ago, when his family rented an RV and drove out here and all over the country. We'd just walked around the BYU campus and were resting and eating at the cougar eat. He zonked. He can sleep anywhere. Standing up if he needs to. It makes me laugh. I hate when he's so exhausted though, because we miss out on him.

He is a hardcore cyclist. Road biking. He takes that thing everywhere with him. He loves BYU football. He is an amazing photographer. He is able to capture real life, candid shots, like I can only dream of doing. He loves the outdoors. He loves the Punkin' Chunkin" every fall. :) He is a wonderful trombone player...takes after my Dad. He's even in a band. I know...I'm related to a star!

I love him so much. I am so proud of him. I can't wait to be with him this summer! Fenwick 2010 or BUST! Happy Birthday Joe!

my last installment...

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

*This is the best way my Mom can describe what it is like having a child with a disability. She says that it captures exactly how she feels. I would imagine the same can be said for any of us who's life does not go according to plan. The thing is, it's not OUR plan. It is the Lord's. He knows us. He loves us. He gave His Son for us.

MERRY CHRISTMAS!

the letter...

Sally is on the far left.

This is the letter I referred to in my last post. The one from Sally's dance teacher when she was 4 years old. It is VERY splotchy and hard to read, so I am going to do my best to type it out. It is so touching. Anyone who reads it will benefit. I promise.

Sallie has made an excellent adjustment to our school situation. She is in a class with 20 other three and four year olds. At the beginning of the school term each child was given a hook in the coat room. Sallie now removes her own coat and hangs it in her place without assistance. She answers the roll by raising her hand. When we sing she sits very still and watches the movements of my mouth, joining in with gestures.

Her progress in tap, ballet, and acrobatics has been consistent. She can change her own shoes and replaces them in her shoe bag. She responds well to the other children and teachers. I know what these classes have done for Sallie. Not what I nor any of the other teachers have done, but what a group of children her own age have done.

You see, to me Sallie was a handicapped child, but to the children Sallie was just "Another child". As far as adjustment and problems, what three of four year old leaving Mother for the first time doesn't have a hard time adjusting. Sallie's adjustment was better than many of her classmates.

Sallie had been in dancing school for about two months when a child tried to remover her hearing aid. (She wanted to "hear" what Sallie "heard"). I explained that she could not wear it as Sallie had to wear it so that one day it might help her learn to talk; (the same way that other children wear glasses to help them see). That was the only time the hearing aid was ever mentioned.

Sallie needs children, but "normal" children need Sallie, too. At Christmas we have a party for all of our pre-school children. As we do not have room for games to be played, the "entertainment" usually consists of the children performing (singing, poems, dancing) in groups or individually. Sallie raises her hand in response to roll call, but never before had she done so to express a desire to "perform" or "take her turn". She sat for a long time watching the children when she suddenly raised her hand. I called her and she walked to the center of the room. She stood there for a moment and began to look frightened. Just then three little classmates began to clap. I walked over to take her hand and when I did she placed her other little hand against her cheek and said "Ball" and then "bye-bye". (Sallie's spoken vocabulary was limited to those 2 words at that time). She returned to her seat seeing the pride in the faces of her classmates. Sallie had been given the best gift a child can receive...acceptance...and she gave back in exchange all that she knew to give...her 2 words...words that had been labored for a long time...words that most parents and children take for granted...but not the children in Sallie's class. They love her and are proud of her every accomplishment.

We have many handicapped children in our school; the shy, the aggressive, the love-starved, the undisciplined, and the "protected" child. These handicaps are usually harder to cope with than the physically handicapped.

I hope that Sallie will be given a chance to prove herself in other "normal" groups before entering the deaf school in 1970. After that she will have little contact with the hearing world until she finishes school. Maybe when she returns to our hearing society she will feel less frightened and more a part of it, because of a memory...a memory of a hearing world ready to accept a deaf adult just as they had a small deaf child on the basis of what she had rather than what she did not have.

Marybell Hennock

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

almost here...

One more week. 7 days. We can't wait. :)

3 of 5...

3 of 5 Schofield girls. Man, I love my girls. So much. They are treasures. It's so interesting the way the Lord blesses us with these little people, then gives us the ability to love each one of them. Immensely. Each one more at different times. My crushes on them change from day to day. On this particular day...it was my babies. Molly and Margaret. Cuddling in Molly's bed at the end of the day. All 3 of us sucking on a paci. :) My thoughts when I look at this picture:

*I love them. They love me.

*Molly's "baby" could use a toss in the washing machine. She won't come clean though. Honestly.

*Margaret is getting so big. She is 6 1/2 months, and SO much fun. I love 6 months. They smile, laugh, wiggle around. Mmmm.

*I'm dying for a gorgeous quilt for Molly's bed...not a 13 year old king sized clearance quilt from Mervyn's flipped upside down. I'm thinking I may have to make one in order to get exactly what I want. I'll think about it once Christmas, our anniversary, and 3 birthdays are gone. I've got to focus on those first.

*You can't see them, but Dave hung twinkle lights in Molly's room. I love them so much. I just may leave them up all year long.

*I can really flare my nostrils.

seriously?

Mrs. Anderson to the rescue again. Thank heavens for that woman. Emily's tooth was hanging on by a thread. Where did my tooth pulling ability go? I was GOOD. I'd pull them for my sisters, kids in the neighborhood. I tried to get Emily's. I really did. Yuck. I just couldn't manage.

Guess who forgot to come...again? It's becoming the regular thing around here. The tooth fairy is a no-show half the time. I remember during our family prayer last night, trying to remind her. As sweet Emily is praying, and I should be focusing, I'm repeating in my mind..."tooth, tooth, tooth." It didn't work. I woke up at 7:15 this morning (who am I kidding? It was 7:45), well after she'd checked under the pillow, in a panic. Could I sneak it. Yep. I could, and I did. I heard her running back upstairs. "It's like a miracle, Mom. She came while we were eating breakfast!" Alex told her that the tooth fairy must have lots of teeth to pick up last night, so she got here as quick as she could. Quick thinking, Alex. It's great having someone else on my side. We told him about Santa too. That's a post for another day. Let's just say it went MUCH better than expected. Things always do around here. I stress and worry, while things work themselves out. We're hoping that happens with adding a 6 month old baby to Molly's room. The bassinet has to go. Michelle is having her baby in 6 days and she needs it. Cross your fingers for us.

Back to the tooth though. As I lay in bed trying to figure out how to get that darn $ under her pillow, I worried. I kept imagining her excitement as she lifted it this morning, knowing what would (should) be there. Then her disappointment when it wasn't. I would visualize her face, as it fell. I would picture her lifting the pillow again, checking all OVER her bed, thinking to herself..."it MUST be here." I kept playing it out, over and over. I was feeling her disappoinment. WHY do I do that? I ruminate. I fret over things that I can't change. I put myself in my kids shoes and allow myself to feel their pain or their sorrow. Then, once I feel it, I make myself KEEP right on feeling it. I am a worrier. There is no doubt about that. I am co-dependent too. Not a great mix. I realized this morning though, that I am empathizing. I think, in a small way, that is what we are supposed to do. As parents. As friends. As followers of the Savior. If we can feel anothers pain, then do what we can to relieve it, we are doing what HE would do. What he has done. In a tiny, little way.

christmas...

If you desire to find the true spirit of Christmas and partake of the sweetness of it, let me make this suggestion to you. During the hurry of the festive occasion of this Christmas season, find time to turn your heart to God. Perhaps in the quiet hours, and in a quiet place, and on your knees-alone or with loved ones-give thanks for the good things that have come to you, and ask that His spirit might dwell in you as you earnestly strive to serve him and keep his commandments. He will take you by the hand and His promises will be kept.

*Howard W. Hunter

i'm thankful for molly...

It's taken me awhile, but I'm back. After reading some thoughts from my dear friend Michelle this morning, I'm back. To document my thoughts. To talk about my little treasures and try to capture why I love them so much. Today, it's Molly. My sweet Molly Venice. Oh my gosh, I love her so much. Don't you?

She is my pal. Except for the 5 hours a week when she is at preschool, she's home with me. And we have a lot of fun together. Even if I am just sitting at the computer getting things done, she is right at my feet, talking. She talks a lot. She has so many interesting things to say. She'll tell me jokes, sing me songs, ask me why, why, why. It's funny, because it took her a long time to start. She was 2 before she really got going...and now it is all the time. She uses big words for such a tiny little person. I laugh whenever she does, too. It sounds so freaking adorable. It's even cuter when she can't quite get them right...like "aposeably".

She is funny. I think all my kids are. You probably wouldn't, but Dave and I sure do. Molly laughs a lot...at herself. Pretty great trait, if you ask me. Just like my mom.

She is intense. When she's happy, it's intense. When she's sad, it's even more intense. Major meltdowns. I think it's the hair. All the red (which seems to be bit blonder than I remember. I REALLY hope I'm just seeing things).

Her voice is so squeeky. Squeeky and sometimes scratchy. I need to video tape her more so that I'll never forget. It's even squeekier when she's talking to Margaret. She loves that baby. When she hears her cry, she quickly tends to her..."It's OK Margie, I'm right here. I'm right here baby girl. Molly's here, sweet cheeks." Oh my gosh, you should hear it. I melt.

She just this very second, handed me about 30 pieces of cut up paper...each with a drawing on it. Bananas, me, an eyeball, sunshine, a monkey horse, a slide. Now she's hugging me and sniffing (like she's been crying) to show me how much she loves me. "Mommy, why are you laughing? Cause you love me or somepin?" She creates things all day. I have to be honest...it infuriates me. The tiny papers all over the carpet. The markers all over her fingers. The REAMS of paper we go through. I'm sure all the great artists throughout history had parents who fostered their passions. I'll work on it. Where can I possibly keep all these treasures? They are left on the counters, tucked under my pillow, folded under the christmas tree.

She is a singer. She really is. She can hear a song 2 or 3 times, then sing it back to you. Not a song off the radio, but ones that the kids learn at school. She sings on key, remembers the words, even gets the intonation just like she hears it. I think she's amazing. She'll be a sunbeam in a few weeks and I am just dying to see her during singing time. She will eat it up.

She is a joy. She can be a bit high maintenance, but still a joy. She is becoming so obedient. I have to "not yell" and "say please", then she'll do whatever I ask. Ooooo...I love her.