July 25, 2011

visit this weekend from Erik

Hi everyone.   
Guess what.  We're having Erik visit us this weekend!  Erik's summer visits have a slow pace.  Everything slows down when Erik is here, which is ok.
The last few times he visited his physical needs were confusing. His nighttime schedule was also confusing.   I'm getting better at not worrying about the little things.  things like:  will he be ok at night?   will he find the bathroom? still need to buy night-lights. Last time he was here we asked him to wear incontinence underwear and he agreed.  I'm hoping he will again.
We know to expect flexibility on our part only because Erik's age makes it so.   When I called his group home recently to see how he was doing I was told he's been "agitated".   One night last week he barged out of his room over to the other group home in anger.  They couldn't figure out why.  It's hard for me to not know what he was upset about.  God knows and he loves him.
This weekend my hope is to see if we can get him laughing, really laughing, play music he'll sing along with, take care of any grooming needs, and pour out lots of love on him.  
It's hot as it can be here in Texas, and doing anything outside is torturous.  however....  Erik loves to swim (and, of course, eat) so hopefully our pool will be just the ticket. 

July 22, 2011

a brother's tribute (Part 5)

(part 5 -- story of Pat Kidd)

Once when he and my parents were headed west across the mountains in New Mexico, I think it was, Pat began to have difficulties, maybe discomfort in his ears from changes in pressure -  I don't know exactly.  Things got so bad, the family turned back and went home.  Another time we were all vacationing in northern Wisconsin, about to take the ferry from Bayfield to Madeline Island in Lake Superior.  We had two cars.  Susan's mother was riding with Susan and Sarah and me; Pat and Daddy and Mama were in the other car.  We had gotten our tickets and were lined up, waiting to drive onto the boat.  It would be fun for everyone - or so I had thought.  We were just talking and waiting when Pat silently got out of the car and walked to a nearby bench and sat down.  I didn't think anything of it at first, but it turned out that Pat had decided he would not get on that ferry.  It seems that a previous experience on a boat had made him fearful.  We went over to the bench to try to persuade Pat.   Sarah, and I tried being nice, and then we tried being ugly.  Nothing worked.  Pat was an adult now, too big to make do something like that.  So Pat and my parents stayed on the mainland that day.  After sightseeing on the island, the rest of us returned to the hotel, where we found that Pat and our parents were just then getting back too - and Pat was using a walker.  Early in the day he had tripped and hurt his knee, and I think constipation was a factor as well.  Constipation was a lifelong concern with Pat.  Anyhow that was the end of that vacation.

It took Pat a long time to recover from any injury.  Many years ago, when he hit his knee on a church pew here, it seemed to take him forever to get over it.  Last September 10, I think it was, he tripped on a bedspread at home and broke his right kneecap.  "Not my fault," Pat said.  After much tribulation at home and at the hospital, Pat underwent surgery to repair the kneecap, and then after a few days in the hospital went into a nursing home for a couple of weeks of therapy.  My dad spent every night with Pat.  Then at home Pat continued to undergo therapy twice a week, but it was a struggle for everyone because Pat was afraid it was going to hurt, and it probably did.  Thanksgiving came, and Pat made it to the family reunion - in a wheelchair.  Exactly a week later, Pat had a seizure at home, and that was the beginning of the end of his life in this world.  He was terrified of the hospital and all the testing that hospitals do.  He didn't want to be touched.  He seemed to have pneumonia or something wrong with his lung; perhaps he had aspirated during the seizure.  The five days at Harris Hospital were miserable for Pat and his parents.  Pat was crying out and belligerently resisting - he was not himself.  He did not want to be messed with; he wanted to be left alone.  He was having trouble breathing, he was not eating, and he had a blister on one of his heels from lying in bed on his back.

I did a computer search on the words "Down Syndrome life expectancy" and learned that at age 50, Pat was already old for a person with Down Syndrome. I read that people with Down Syndrome develop Alzheimer's Disease if they live long enough, and that "late onset epilepsy" is also common.  It became clear that Pat's time on earth was running out, that his quality time was over, and that the best approach would be simply to make him as comfortable as possible.  The transfer to Vitas Hospice at Baylor All Saints Medical Center brought immediate relief to Pat and his parents and everyone else who was aware of his struggle.

After Pat had his seizure and was so agitated in the hospital, I really didn't know how to pray except for peace and for God to work out the best for Pat and for the rest of us.  I know that many of you were praying, as well as my congregation in Dakota, and others.  I give thanks that God answered our prayers, and I trust that God has provided for my brother, Pat, and that he will provide for us all, always.

Many things we cannot explain - why things happen the way they do - why Pat was the way he was.  Things would have been different if he had been so-called normal.  My life would have been different. Would it have been better?  I don't think so.  I would not wish Down Syndrome on anyone, and yet I give thanks for my brother Pat as he was; I am grateful to have had him as a brother, and I know that all of you have been blessed as well.  You know, life is given. Our genetic makeup is give, our circumstances are given.  Our spiritual gifts are just that: gifts from God.  Paul wrote the church at Corinth, "What have you that you did not receive?  If then you received it, why do you boast as if it were not a gift?"  Today we give thanks to God for the gift of Pat, who had a way of humbling us and grounding us in the things that really matter:  hope and love and simple, childlike faith.  We give thanks that Pat was who he was and that we are who we are, even as we pray for the way that we shall be some day in Jesus name.   Amen.
(used by permission)

I agree, Amen.

July 21, 2011

a brother's tribute (Part 4)

(Part 4 -- story of Pat Kidd)

We had to keep an eye on Pat, especially when he was younger, because he might walk away from our house.  He might hear a dog barking and go to pet it.  He would just wander away, and I remember a couple of occasions on Volder when he did, and there was much anxiety on the parent's part.  One time they found him at a police station, where he was happily drinking a Dr. Pepper with the officers, and not at all concerned about the commotion he had caused.  Another time the whole neighborhood was out looking for him and it was getting toward evening when somebody found him and brought him back.  Years later, Pat went through a period of wanting to be more independent, but he was always vulnerable and pretty much defenseless.  There were facilities that could have accommodated Pat, but no one in the family really wanted to place him in one, as long as he was happy at home.  At the workshop where Pat was employed for a time, some of the people were loud and foul-mouthed, and Pat would get physically sick in order to avoid going to work, so that was the end of the workshop.  Pat liked to say that he was "retired".

All through his life he loved music, primarily the religious and classical kinds that Mama loves, and I do too.  Pat wold sit near the stereo in the living room listening to a record, looking at the cover, and humming along especially with the bass part.  He would get agitated when the volume increased, and when the record ended he'd turn the stereo off.  "Just turn it off."  Pat loved music, but he didn't like loud music; he feared sudden noises.  Once when I took him to the circus, I don't think he liked any of it, but when the high-wire motorcycle act filled the coliseum with the roar of a revving engine, Pat just got beside himself, and so we left.

Most of the time Pat would go along.  He enjoyed going on trips and would ask, "Where are we?" or "How many miles?"  Sometimes he would ask Daddy, "What sign say?" and Daddy might say, "No Passing," and then a little later Pat would ask, "Sign say?" and Daddy would say, "Pass With Care."  This back-and-forth went on for maybe 30 miles one day when we were on the road home to Dakota, Illinois, from Galena.  As I say, Pat was usually cooperative.  He desired peace in the family, and he would apologize in order to make things right again.   Last January, when we were in Ft. Worth, Pat and I went walking on the south side of town, and then I drove us downtown to the train station, and I wanted to go inside and take a look.  Thirty years ago Pat would have gone with me, but this time he refused to get out of the car, I think because of all the traffic and train noise, as well as the fear of the unfamiliar.  Pat was becoming more cautious.  I didn't want to leave him in the car by himself, and he steadfastly refused to go with me, so I just gave in, I got back into the car and headed home without a word.  After we got home, I was kind of pouting in the living room, and Pat began to make amends:  "I sorry, Tim," he said.  Of course then everybody else perked up and had to find out what Pat was sorry about.  He said, "Train station."  So I had to explain in sentences what happened.  Pat never was too proud to apologize, nor did he ever hold a grudge or seek an apology from anyone else.

He enjoyed a wide range of foods but needed help in cutting his meat and was sometimes mighty frustrated by a multi-layered sandwich that would fall apart on the way to his mouth.  He did get frustrated and sometimes angry, especially when he was tired or hungry.  Pat's basic needs had to be met.  Mama laundered his clothes, and Pat usually got some help getting dressed.  He showered with Daddy, and he brushed his own teeth, squeezing out a huge amount of toothpaste and chewing on the brush. We tried to get him to use less and to avoid swallowing the toothpaste, but Pat would often agree with you and then proceed to do whatever he pleased.

July 20, 2011

a brother's tribute (Part 3)

(Part 3 -- story of Pat Kidd)

Pat loved animals, and he played a lot with our dog Anna when we lived on Volder.  Poor Anna took a lot of abuse, because Pat could be pretty rough, even though he was not malicious.  Pat loved holes as well as dogs, and one day he shoved Anna down a storm drain on our street.  For a while, Anna was out of sight, but we could hear her down there.  Fortunately, it was not a bottomless pit, and God sent a man, who was able to get down in the storm sewer and rescue our pet.  On another occasion we were all visiting my cousin Phyllis somewhere in East Texas, and Pat was outside with some other kids and with Phyllis' dog. We were in the house - Grandmother Woods was there too - when a messenger rushed in with the urgent word that Pat had thrown the dog down the well.   We all hurried outside and looked into the depths, and sure enough, that little dog was dog-paddling for its life and looking up at us with pleading eyes from maybe 15 feet down.  Lord, have mercy.  The dog would surely tire and drown, if we could not find a way to lift it out.  We were all agonizing over what to do.  Phyllis had an inspiration.  She got a basket and rope, and we lowered it down to the dog, and the dog climbed aboard, and we pulled it up ever so carefully, just hoping the basket wouldn't tip.  I think people must have been praying, because miraculously that poor dog rose into the sunlight, drenched but not seriously hurt.  Afterwards, Grandmother Woods wondered, "What got into Pat, to make him do such a thing?"  She said she thought it must have been the devil that got into him, and I said, "Oh, Grandmother, it wasn't the devil that got into Pat.  That's just the way Pat is,  He loves dogs, and he loved holes.   It just made sense to him to put the dog down the hole."  But since then, I have often wondered what does get into people to do outrageous things.  With Pat, though, there was no meanness and no comprehension of consequences.

My mother always considered Pat innocent, and precious, and her little angel.  I remember the day when Pat and I were both young, and our family was visiting a historical site at Vickburg, MS, I think it was.  I just remember that we were all walking in a park-like area, and it was very dry, and there were large cracks in the ground, and Pat was flipping Mama's bracelet because it was wide and flexible and flipped really well.  It was Pat's favorite flipping device at the time, and it was also one of Mama's favorite pieces of jewelry.  You know what happened next.  Down the crack it went.  Way down.  We couldn't even see it.  Probably it's still there.  And when he would do something like that, Pat would be so pleased, and he'd want to talk about it.  "Where's bracelet?"  When he got older, he learned to spit, and if you didn't watch out, he'd go to the guardrail at the mall and lean over and spit to the lower level.

Although Pat was in some ways an adult, he remained in other ways childlike.  He depended on his family.  He loved us, and he loved his other relatives and friends.  Pat loved people in general and was not at all shy.  He would put his arm around a stranger who looked interesting.  At a restaurant, when he wasn't eating, Pat might gravitate toward another table, if the people there looked to be having a good time.  I always thought a person should mind his own business, but Pat was not like that, and I was often embarrassed by his uninhibited outreach, especially to young girls.   Lord, have mercy.  If Pat got an opportunity to make contact with a pretty high school girl with a pleasing personality, he would leave his father and mother and brother, and go sit with her, and maybe put his arm around her.  Thus he would do, naturally and innocently, what I would never in a million years have dared to do.  People hardly ever took offense, though, at Pat.  I was embarrassed many times, but in a way I admire Pat's uninhibited approach.

July 19, 2011

a brother's tribute (Part 2)

(Part 2 -- story of Pat Kidd)

Pat liked to go walking a couple of times a day; he and my dad took mostly the same route through the mall or in the neighborhood.  They were a familiar sight on the street.   People would talk to them.  Of course, when Pat went out for a walk, it was more of a stroll.  One problem was that he didn't see very well.  His eyes didn't line up quite right, and he had trouble judging depth, and he was afraid of falling.  As he got older, he became still more cautious; when he reached a curb and would have to step up or down, he would wait until he could hold on to somebody.

Pat might say, "Time for exercise," but  he never stressed himself.  He didn't push himself, and he had all the time in the world.  Slowly he would move, and he tended to develop habits such as stopping for rest every block or so, and stopping to lean over and pull up his socks.  After a walk, he would want a drink from the refrigerator, a "bubbly" as they called it.  "Time for bubbly" would come twice a day.  Pat would go to his favorite chair in the living room and pull the tab on the can and listen to the hiss, and sigh like he had worked all day, and relax and enjoy the reward of his labor.  "Tired out.  Workin' hard."

Pat had a wonderful sense of humor.  He found other people humorous and would imitate them.  Pat would feed on the emotions and the mannerisms of people around him, and would reflect those back.  Esther Sanders, who came over to do housework for us, talked like a black woman because she was a black woman, and Pat would try to talk like her.  "Pat," she would say, "you mockin' me."  Pat would mock anyone.  He loved to imitate the distinctive voice of his Aunt Martha calling her husband; "Bruce, would you bring me my sweater?"  The more we would get tickled at Pat, the more he would pile it on:  "Bruce!" Pat loved to tease.  He would say, "Mama, short legs," and an impish grin would come over his face, and Mama would say, "Now, Pat..." We'd start laughing and Pat would just keep laying it on:  "Mama, short legs" over and over again until he had milked that one for all it was worth.  Pat loved it when people laughed, even if they were laughing at him.   Bill Gafford was a big man with the biggest laugh I have ever heard; he would come over, and when he would laugh, he would open his mouth way wide, and Pat just loved to imitate Bill - and his wife, Margaret, and daughter Linda.   Pat would imitate his uncles too.  Uncle Wilbur used to have a distinctive expression that he used frequently:  "Oh shush!"  Pat picked up on that and said it over and over.

Pat was a creature of habit.  Early on in his life, he began making the distinctive sound that we called "gooking."  No one else could replicate that sound, which he made by squeezing air through his throat and nose.  Pat might gook at any time, but he tended to do it more when he got tired.  He would gook before going to sleep; he might even start gooking on the phone while the rest of us were talking.  We would tell him to stop, and maybe he would stop temporarily, but then he would start up again.  Gooking was a habit that Pat continued for most of his 50 years, and it became a familiar sound to all who knew him.  Sometimes kids would hear Pat gooking and would look funny and ask, "What's he doing?"  We could only say, "He's gooking; it just something he does."  Another habit of Pat was his rocking; he would rock back and forth, whether he was in a rocking chair or not.  The other habit was "flipping."  He would find some object such as a piece of paper or a bracelet and gently flip it back and forth.  Other times he would not use an object but would flip his hand and fingers back and forth.  Sometimes he flipped and rocked and gooked simultaneously.

July 18, 2011

meet Pat Kidd through his brother's tribute (Part 1 of 5)

As mentioned in my previous post, I would like to share with you the tribute that was written for Lee Patrick Kidd (Pat) upon his passing in 2006.   It touched me greatly and I hope it speaks to you too.

Funeral - Saturday 12-16-06
Connell Baptist Church, Fort Worth, Tx

Growing up in this church, I learned the importance of what Pastor Ira Bentley called "simple, childlike faith."  I was maybe 10 y ears old when at the end of a Sunday morning service here, I answered the invitation to profess my faith.  There was no test to take or class to go through.  Brother Bentley just simply asked if I trusted in Jesus as Lord and Savior, and I told him yes.  Then the congregation voted me in, and that very night I was baptized.  Later, when I went to  Princeton Seminary, I learned a lot more about the Bible and theology, but it was always "simple, childlike faith" that motivated me, and that has not changed.  Jesus said, "Let the children come to me, and do not hinder them; for to such belongs the kingdom of heaven."  Taking a child in his arms, he told his disciples, "Whoever receives one such child in  my name receives me; and whoever receives me, receives not me but him who sent me."  Jesus said, "Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven.  Whoever humbles himself like this child, he is the greatest in the kingdom of heaven." The 20th century theologian Karl Barth wrote many volumes perhaps hard to understand; but at seminary I learned that when Barth was asked by a student to sum up briefly what he had been writing over a lifetime, Barth said, "Jesus loves me, this I know, for the Bible tells me so."  There is no substitute, is there, for "simple, childlike faith."

The life's work of my brother Pat was to keep bringing us back to the humble basics of love and hope and "simple, childlike faith."  What is essential?  What is necessary?  Pat did not put on airs.  He was who he was.  At the table he didn't bother with pleasantries - "Don't talk, eat."  Early, he learned what a hamburger was, but he would say "ruh-ruh-ruh" for hamburger because he couldn't articulate the word.  I used to work with pat on that when we would go to Dairy Queen and eat our burgers and drink our malts in the car.  "Pat, can you say 'hamburger'?"  "Ruh-ruh-ruh" he would respond.  You know, women often notice that men are not very verbal; well, Pat was an extreme case.  Eventually, he did learn to pronounce words correctly, but he never really got the hang of speaking in sentences.  Instead, he would throw out some key words:  "Time for lunch.  How 'bout Luby's"  Just the basics.

But Pat was perceptive about what was happening, how people were feeling, and what the day's schedule was.  Like his father and like his brother, Pat craved routine.  F or a long time the day would begin with a  Carnation instant breakfast.   A glass of milk would be let for him in the refrigerator, and when he was ready, he would come into the kitchen and get out the glass and go get a spoon and get the  packet of instant breakfast and pour the powder in, and stir, and stir, and stir.  At the workshop where Pat worked, a girl with Down Syndrome was given the name "Christmas" because she was so slow.   Well, Pat wasn't quite that slow, but he was slow.  Eventually he would finish stirring and take his instant breakfast into the living room and sit in his favorite chair and drink at his leisure.

Usually  he was pretty cooperative about fitting into the family's plans but he would not be rushed, and often it took a lot of persuasion and explanation on Mama's part to motivate, especially when something different was being required of him.  Pat enjoyed doing things the same way every day, opening and closing the curtains, turning lights on and off, and managing the television with the remote.  Pat, whose life was pretty much managed by others from first to last, found ways to assert himself and claim control.  Sometimes it seemed to me that he was the one who ran the place.  Mama would select some nice clothes for Pat to wear for an outing but after the outing Pat would go to his room, take off his nice clothes, and slip into something well worn.
(continued next post...)

July 5, 2011

what I needed

Dear reader,
When I started writing this blog last February I hoped people who had family members with Down syndrome would read it, especially those with siblings having Ds. At that time I was feeling alone with my concerns about Erik's future and the uncertainty of his old age.  I craved connection with others who were walking the same road.  I was thinking of writing a blog, but just thinking.  Truth be told I was nervous about the writing part, but my hope overcame my fear.  Especially after I talked to Marjorie.

Two months prior to becoming a blogger, I was fortunate to be put in touch with Marjorie, who lives about an hour away from me.  Marjorie's niece knew I had a brother with Downs and she got us connected because Marjorie's son, Pat, had had Downs.  We spoke on the phone about Pat and about Erik.  It was just what I needed - to talk with someone who understood, and hear about their journey.   She told me that Pat passed away at age 50 (Erik's age at the time).  He had been gone for almost 5 years and she still missed him every day, she said.  She wanted to know how Erik was doing physically and she understood all the things we were experiencing. Talking to her was like being wrapped up in a warm quilt of "yes, dear, I know" which she actually said.  Felt so good to hear that.

After our conversation I mailed her a copy of a newspaper article about Erik.  She sent me a copy of something written by Pat's brother, which he shared at Pat's funeral, a tribute to Pat.  When I sat down to read it, it was like opening up an even bigger door of understanding.  Pat's brother beautifully wrote about his life, what it was like having him in the family and about the end of his life.   I didn't feel alone any more.  I would like to post this beautiful tribute on my blog.  Look for it in the next few weeks--it might be just what you needed.
I hope you're all having a wonderful summer.