December 14, 2011

no happy camper, Elvis and hugs

A Joyous Merry Christmas to all of you from Erik and me.

I was in the middle of baking today and suddenly felt like talking to Erik.  Called up the group home and Shirley, one of his supervisors, answered.   I asked how Erik was. She said he's been ok -- up until last night.  For some reason something bothered him in the night and he got upset and it disturbed his sleep. Made me sad. She said he sometimes has these angry episodes at work.  Shirley's his work supervisor and she said you always know when he's upset.  He'll throw things on the ground, clearly not a happy camper.  It doesn't take a long time to talk Erik back to his old self but it's frustrating because no-one really knows what set him off.   I thanked her for helping Erik so well when he's agitated.  Then Shirley told me that she had a special spot in her heart for Erik.   Lord, thank you for sweet Shirley.   

She said sometimes when they're working (assembling plumbing parts) the music will be on and Erik will sing along. But, one time Elvis' Teddy Bear song came on, and.... Oh, she said, he belted it out - singing and twisting his hips.  I wish I could have seen that. Erik has always loved Elvis. Right about then, Erik appeared in her office.  His ears had perked up as he heard her talking to me about him from the next room. so funny.  So I got to visit with him.  He's happy about Christmas coming.

I've learned from Erik's past few visits that being away from the group home is harder and harder for him.  I think many of the residents who live there are the same, they're eager to get back.  When Erik was here over Thanksgiving he appeared very sad. I asked him if he missed Aldersgate and he nodded.  I told him he was going back real soon which made him visibly happier.  

 Returning Erik after his break, my hubby and I unpacked his case in his room, spoke to the weekend houseparent on duty.  We stepped outdoors to go see what was happening at the other house.   Outside in the other yard we saw Penny and Roxanne (2 residents) walking the dog.  Well, Erik started RUNNING over to Penny with his arms outstretched wide, and Penny smiled real big and RAN over to Erik with a huge was like watching a scene from a movie!  (note: Erik never runs anywhere; his normal speed is slo-o-o-w)  Penny hugged us real hard and told me, "I watch out for him, I always make sure he's ok".  Oh Lord, thank you also for Penny, the "Little Mama" of the group home.  Delight to our hearts.

Erik and Penny, taken in '08.

November 30, 2011

The Pajama Showdown.

Five years ago Erik lived with us for a while.  During that time I noticed he needed new pajamas so I bought him a pair at Target.  Here he is, happily wearing them for the first time.

Erik has really become uber-attached to these pj's.  They are all he wants to sleep in summer or winter.   The inevitable has happened.  They're getting worn out.  The bottom part of the pants (the part he sits on) are wearing thin.   Erik has not been aware of this and really doesn't care. He's not jumping up and down to retire this pair because we've tried.   Last week when he was visiting us I saw how bad the bottoms were and decided that I just had to try again.  I went shopping hoping to find a set, a pair of matching tops and bottoms because that would be similar to the beloved set.  No luck.  So I bought a new pair of striped pants, ones he could wear with the current button-down top.  I knew they weren't a perfect match order for Erik to like them they'd have to be exactly like the ones he had and there's no way I'd find exact replicas.

I brought the new pants home and put them on his bed.  He found them later, took them in his hand, came to me in the kitchen and... just looked at me and looked at the pants.   Me: "Oh Erik, those are your NEW pj bottoms."  He wasn't smiling.  I took them back to his room and friends came over so we got busy.  Later after friends left I mentioned to my husband that I bought Erik some new pj pants.  Erik was listening and after a bit he got up and walked to his room.   We heard the door close.   Hubby and I wondered what he was up to.  I had a suspicion, and it wasn't that he was joyfully trying on the new pants, which, by the way, I had spent an hour hemming!   He emerged wearing: yes, you guessed it, his old trusty pj's.   I guess he thought if they were on his body they weren't goin' anywhere.   oh boy.

I took him to his room and we had a talk.  "Erik, I know you love these pajamas, but there are holes in the back of them."  Erik (aghast) "Where?"   I touched the holes.  He could feel my fingers, I know he could.  I took his own fingers and showed him where the holes were.  I said the new pants would be just great, and he could wear the old top with them and it would be so-o-o-o nice.   He crossed his arms and glared at me.  Then he shook his head at me, unblinking.  Erik's verbal ability is limited but he needed no words to get his message across.

ok.  what to do.  We both went back to the living room where hubby was.  He asked how it was going and I said quietly that we were going to have some issues.  Erik was silent, and tension was present.   Then he got up, went to his room. We heard one door close, then another door close.  We waited a bit and hubby went to check on him.  Then I heard hubby say, "Erik unlock these doors right now."  He promptly opened the doors (thank goodness) came back to the living room, all content and cordial and even gave me a thumbs-up, like all was A-ok.  Hmmmm.

We sat there a while, continuing to watch a Toy Story movie, and suddenly, I knew.  He had done something with the dreaded new pj bottoms!    I whispered my suspicion to hubby and after a bit he went to look for them.  He found them, alright, hidden in the back of the closet.  So, that's why Erik was flashing me the thumb's up.  He took care of the problem and thought "no more ugly, new, bad bottoms for me!"

Hubby took them and put them in our room and the next day when I packed Erik up I put them in his suitcase to take back to the group home.  We chose not to fight this battle with Erik.  In the scheme of life it's a little thing.  But as his family we want him to look well-cared-for and as well-groomed as possible.  Worn-out pj bottoms don't do that.

Erik is resisting change with a vengeance and who can blame him?  A person who suffers with Alzheimer's needs regularity.  I bet at this moment he's happily wearing the old pj's and doesn't care at all about the holes.   I only wish I'd bought a spare pair of those pj's that day in Target 5 years ago.

When I unpacked his suitcase back at the group home, I hung the new pants on the hanger right next to the old ones.  I wonder what he's done with them.
Erik still happily wearing them this past summer.

November 8, 2011

the power of an encouraging heart

Today I ran across an email one of my friends sent me 4 years ago.  She found a story
about a Down syndrome boy named Johnny who worked in a grocery store.

my friend's email that day said:

Thought you might enjoy this.  Made me think of Erik.

You can make a difference~ no matter who you are or where you are!

click HERE and be inspired.

October 24, 2011

Chivalry still lives.

I was reminded today by one of the house moms at Erik's group home how much Erik blesses others by being polite, especially to the ladies.   House mom Barbara told me that Erik watches for her to arrive at the home every morning just so he can jump up and hold the door open for her.  So sweet.  Isn't she blessed?  It reminds me of the countless times Erik has done that for me and every other lady he's around.   Many times over the years when we were about to dish up our food or go into a building Erik would say, "Yadies first" (L sounds were hard for him).  He would extend his arm and smile, urging the ladies to proceed as if he had all the time in the world and wanted you to feel special.  He's a gentleman and enjoys being one, even today with his faculties fading.  That just makes me happy.

October 13, 2011

Best laid plans

     It's that time of year again, when our family plans Erik's holiday visits. His group home closes during the holidays so we go get him and bring him to family -- in either Dallas or Houston. This year our family in Dallas will have Erik's company at Thanksgiving and my sister and brother in Houston will have him at Christmas.  Erik's already looking forward to it, he loves holiday time.   
     Last year the holidays were a blur, a very crazy blur. Erik was in Dallas for Thanksgiving. We had a wonderful Thanksgiving meal at our Dad's. Erik hung out with us all but I noticed that he wasn't glued to the Dallas Cowboy game as in the past. I'm sad he can't follow the game like he used to. He was very quiet and detached.
     And then Christmas came around and we were planning to take Erik with us to San Antonio to spend the holiday with my husband's family.  Erik had never been there so I was a little concerned the unfamiliarity of the surroundings might be hard for him but everyone in the family assured me they'd help him feel welcome and ok.  During the nights, Mike and I were going to stay with Erik at a hotel near my in-laws.  We had it all worked out.  Then, the day before we were to leave for San Antonio, our son came down with a really bad stomach bug, really bad. (earlier that day he had gone to a cajun place and eaten alligator. Yep he really did. We later discovered it wasn't that that caused his bug. But he learned that he'll never eat it again)  We were up with him most of the night. Erik was sleeping in our son's room on a mattress on the floor so we put our miserable, sick son in our daughter's room, and the rest of us played musical beds so, hopefully, no one else would get sick.  Ugh, please, no one else get sick.  We (I) do not do well with digestive issues.   
     So, we were wondering if we should even go on our trip.  Then my dad and stepmom did a wonderful thing.  After hearing what we were going through, they said they would come pick up Erik, keep him with them and take him back to the group home after Christmas. Wow.  I will forever be grateful to them for volunteering to do that. 
     We did make it to San Antonio and we made it to the Christmas Eve service.  After a while our son started to feel more like himself and then...our daughter caught a respiratory cold that wiped her out, and then... in the wee hours of Christmas Eve my husband came down with the symptoms of that horrible stomach bug, and it attacked with a vengeance.   If we had had Erik with us in our hotel room that night and all the following day I don't know what we'd have done.  If Erik had caught that bug...I shudder to think. It was a divine provision that he was back in Dallas.  My hubby and I spent all of Christmas Day in that hotel room, trying to make it through the day.  I didn't catch the bug (thank you, Lord) and when we finally all got together again at my in-law's house we were a very bedraggled bunch.   Christmas Day in hotels is very lonely and quiet, especially when family and festivity is 10 minutes away.   
     I'm learning to accept what the Lord brings. We make our plans but ultimately His purpose prevails. Aren't there 2 verses in Proverbs about that very thing?  Yes, Proverbs 16:9 and 19:21. He's in control.  When I trust Him things work out better.  So, I'm already telling Him I'm trusting what he brings this holiday season.  I'm trusting that Erik will have a good time.  
     And I would love to have holidays with NO you-know-what.

October 5, 2011

"Has Down syndrome hurt us?"

Hi again, friends.  I'm still here.  I know, it's been a while since I've
posted anything.   Everything's fine and Erik's fine.  I've just been 
wondering what to include on this blog that I haven't already written.
I've kind of run out of "Erik stories" ... for now.   
Then today I saw this article so beautifully expressed by Amy Julia 
Becker, mom of a 5 yr-old daughter w/ Ds.  I love her description 
of recounting the stories of her children's birth, and deciding to tell
Penny more about the day she came into her life.    
She is 'right on' in her view of the cultural attitudes associated with families
like hers. She asks the hard questions:  Is a life with Down syndrome a life
worth living?  Is the burden such a life places on a family and society
too great?
Honest and inspiring, so I share it with you.

October 3, 2011, 1:10 PM

Has Down Syndrome Hurt Us?

Of the growing genre of eloquent parents describing what it takes to raise a child with a disability, Amy Julia Becker is one of the best. She has writtenoften for Motherlode, about how Down Syndrome means life for Penny is different, and exactly the same.
She recently published a memoir of her family’s tale, called “A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny.” To commemorate the moment I asked her to write here for me one last time, about the question every parent asks in one form or an other at the start of the journey.
By Amy Julia Becker

When a car trip gets too long, when they are stalling before bedtime, on a rainy day, my kids ask me to tell them the story “’bout when I was born.” They can recount many of the details: that William’s head was very big (they giggle every time I explain that the obstetrician had to vacuum him out) and that we had to wait and wait and wait for Marilee and that for all three of them I got medicine to make me feel better when we went to the hospital. They know that their dad and I spent three hours getting Penny’s nursery ready before I called the doctor. But for a while, when I told Penny’s story, I left out one crucial detail. I didn’t tell her what happened two hours after she was born, when a nurse called my husband out of the room and he returned with wet eyes and a sentence I couldn’t comprehend: “They think Penny has Down syndrome.”
Earlier this year Penny and I were alone as I retold the story again, and I decided it was time to let her know that the day of her birth hadn’t been all rejoicing and ecstasy. I got to the end of the familiar narrative and I added, “After you were born, I was scared, because the doctors told us you had Down syndrome.”
She cocked her head to the side. “Why you were scared, Mom?”
“I was scared because I thought Down syndrome would hurt you,” I said. I paused, knowing I had only told part of the truth. “And because I thought it would hurt me.”
“Oh.” Penny blinked her eyes the way she does when she’s thinking hard about something.
My thoughts moved back to the wave of fear and sadness and anger that had engulfed me in the hospital, the darkness that lifted only when Penny was in my arms, when I stopped worrying about the years ahead and instead gazed at her pudgy round cheeks and waited for her deep blue eyes to flicker open and believed for just a moment that everything would be O.K.
And, five years later, everything is O.K. My fears about Penny’s condition were largely unfounded. She hasn’t suffered major health complications and it has not been difficult to love her. I can even say that I’m grateful to have a child with Down syndrome because through her I have learned to value more of my fellow human beings than I might have if I had given birth only to “typical” children.
But I haven’t told Penny that the general cultural perception of Down syndrome continues to hurt us all. The hurt comes in two forms. One, the well-meaning but simplistic pronouncement that people with Down syndrome are “sweet and loving angels.” This attitude dehumanizes individuals with Down syndrome by assuming they can’t and don’t experience the full range of human emotions and needs. A similar hurt comes in the statement I heard all too often when Penny was first born, “God only gives very special parents such special children.” Down syndrome became a litmus test for my parenting skills, but I was well aware that I didn’t know anything more or have any greater capacity to love my child than the woman who gave birth in the room next to mine.
The other way that cultural attitudes toward Down syndrome hurt us is through the assumption that individuals with Down syndrome and their families would be better off not living at all. At this moment, most women who give birth to a child with Down syndrome do not know about their child’s extra chromosome until he or she is born. Only 2 percent of all women seek a definitive diagnosis of Down syndrome or other chromosomal abnormalities through amniocentesis or chorionic villa sampling during pregnancy. But of the women who receive that definitive diagnosis, the vast majority (90 percent) choose to terminate their pregnancies.
Recent advances in prenatal testing include a non-invasive blood test for all pregnant women with 98 percent accuracy in diagnosing Down syndrome in the ninth week of pregnancy. It’s not the test that bothers me, nor the desire to prepare well for the birth of babies. What bothers me, and what hurts our family, is the perception, often reinforced by doctors, that a life with Down syndrome is not a life worth living, or that the burden such a child places upon a family and society is simply too great.
Penny starts kindergarten this fall. She will be learning to read and play and paint and use the computer and express her feelings alongside her typically developing peers. She will help me out around the house by “folding” laundry, by setting the table, by making her little sister giggle as I prepare a meal. She’ll frustrate me when she refuses to go to the potty by herself or when she yells at William or when she whines about not getting her way. We’ll snuggle on the couch and she’ll sound out words on flashcards, with a flush of excitement rising to her cheeks when she figures one out and says, “I can do this, Mom!”
In that moment a few months back, when I finally added Down syndrome to Penny’s birth story, I took her chin in my hand so I could look into her eyes, now a sparkling green with a dark blue outline. I said, “But Down syndrome didn’t hurt you. And it didn’t hurt us. So we didn’t need to be scared anymore.”
“So then you were happy?”
I reached out my arms and gave her a big hug. “I couldn’t be more happy that you are my daughter.”

August 23, 2011

Down Syndrome fact or fiction?

Several months ago I came across a few "myths" related to Down syndrome.   I thought I'd weigh in.

1.  Fact:  Children with Down syndrome are only born to older parents?    This was not true in my parent's case as Erik was the first of 4 children and they were very young when he was born in 1960.  I know many cases where parents who were in their 20's and 30's have had children born with Downs.
Fiction: 80% of children with Down syndrome are born to women younger than 35. However, the likelihood of having a child with Down syndrome does increase with the age of the mother.

2.  Fact:  Children with Down syndrome are always happy?  Erik was a very happy baby, my mother says, and for the most part he remained a happy person.  But he had his bad days too like all of us.
Fiction: People with Down syndrome have the same feelings and moods as everyone else.

3.  Fact:  People with Down syndrome cannot form relationships?  Erik was more than able to make friends and enjoy people.  He loved people from the moment he met them and wanted to spend time with them.   He was always inviting people he had just met to his condo to watch football and have a coke.   Today he shakes hands with everyone he meets and is a sociable guy despite his aging mind and body.
Fiction: People with Down syndrome are perfectly capable of forming all types of relationships with people they encounter in their lives, be it friendship, love or dislike.

4.  Fact:  People with Down syndrome cannot have children?  Don't know much about this subject, I have to admit.  Our family never considered Erik having a relationship involving marriage or anything along those lines.  But he definitely had a capacity to love.
Fiction: Women with Down syndrome can and have had children. It has been recorded that two men with Down syndrome have become fathers. The information about fertility in people with Down syndrome is very outdated and based on research in institutions where men and women with intellectual disabilities were kept apart.
5.  Fact:  All people with Down syndrome will eventually develop Alzheimer’s disease (dementia)?  This fact has proven true with our sweet Erik.   He is 51 now but probably operates like someone 20+ years older.   His body and mind has now aged beyond our parents.  I confess I often wonder what the near future holds for him.  This promotes gratitude for the simple things, which is always good.  Like hearing his voice on the phone or seeing him smile and laugh real hard about something.
Fiction: Although many people with Down syndrome do develop dementia in their later years, this is by no means inevitable. Research indicates that the incidence of dementia in people with Down syndrome is similar to that of the general population only that it occurs 20-30 years earlier.

When Erik was born in the 60's medical care and knowledge about this handicap was so far behind our present day.  Erik's life is such a success story.  Those who have babies with Downs now will have the benefit of advanced care and tons more support from online communities and educators.  I anticipate we'll see those with Down syndrome accomplish things we never could never imagine.  One thing for sure, they forever influence those with whom they share their lives.

here read about Erik's influence on others.
here read about Erik's job at the hospital.

August 21, 2011

Sweet welcome for Erik

 Erik's smile and sweetness blesses everyone.

As I mentioned before, a few weeks ago Erik visited our house for the weekend.   Originally, he was going to return to his group home on Monday.  But due to a sudden death in my husband's family we had to change our plans; so our son and daughter ended up driving Erik back to Brownwood on Sunday evening.  Erik enjoyed being at our house but it was clear to us that he was happy to be returning to his friends.

Before his visit I had come across some old photos of Erik with friends and an awesome one with Erik dressed as Elvis receiving 1st prize at a talent show.  My daughter said he looked at those pictures over and over on the way home.  Maybe they triggered some memories for him.

When they pulled into Aldersgate Enrichment Center.  Erik, all of a sudden, was a man on a mission.   He didn't want to even take his stuff to his room, he wanted to put it down inside the door and go.   My kids persuaded him to at least take his things to his room which he grudgingly did but... after that, he charged out of the house, right over to the other group home where he knew things were happening!   He walked in, threw his hands up in the air with a huge smile - and, oh my goodness, I know if he could have he would have yelled out "Hey! Here I am!!!"

The response he got was "Erik!! you're back! we missed you, come have an ICE CREAM FLOAT!!!!"   His friends immediately started joking with him, poking each other.   They have lots of inside jokes there.  They talked about how Erik likes to "put people in jail."  He holds the door handle so they can't leave their room, all the time smiling and laughing.  (hmm, now I know why he tried to do that to my husband Saturday night.)  Penny started asking Erik,  "Erik, how many girlfriends do you have?"  Erik held up 2 fingers.  Penny is one of those 2.

Pat, who I've mentioned before in this post, told our kids he didn't know Erik would be gone that weekend and was worried about him.  Pat has become such a treasure to Erik, as are all the house moms and dads.  He helps him shave (yay!) and works with him to help him talk more.  Pat says to him "You know, if you're gonna be my friend, you've got to talk."  He is so patient with Erik because sometimes he can only get out one or two words.   Pat also remarked again about Erik's legendary appetite. (we are not surprised)  Pat said one time they were all in a restaurant and one of the residents went to the restroom and while he was in there Pat saw Erik take his plate and finish it off, then finish off his own steak, then have dessert!  He's just an eating MA-chine leaving people shaking their head in amazement.

Pat also shared how Erik gets to sing on Sunday at church.  Erik tried to tell us about that but he couldn't get out anything other than "I-I-I sing".  But from what Pat said it sounds like Erik goes up to the front during worship time and sings most Sundays. I would love to see this. Pat says it's such a beautiful sight he often finds himself crying.

What a heartwarming return for Erik!  My heart swells in gratitude that he lives in such a loving place.   In case you're interested, here's a link to the group home where Erik lives and works in the Packaging Department. (you can see his picture on that link)  I've said it before and I'll say it again, those with mental challenges often excel in loving others and that's clear in this unique community at Aldersgate.

August 6, 2011

Erik's visit -- singing, swimming, laughing

Well, Erik visited last weekend and I'm pleased to say everything went pretty well.  My son and I picked him up in Brownwood and as soon as he got into the car he started smiling from ear to ear.    He settled in for the 3 hr trip.  We put some music on and he sang, clapped, tapped his hand on his legs ...  and pointed (the cute thing he likes to do when he sings - like he's an entertainer pointing toward his audience).

Smilin' and singin'
 On the trip home while driving through a small town I saw a billboard for Altzheimer's awareness.  There was a picture of an elderly person on the billboard with these words:  

 I know what I want to say but just can't find the words to say it.  

That's sums up Erik's world, he tries to get the words out and sometimes succeeds, even if it's just one word.  Most times he tries and gives up but we tell him it's ok.

Erik adjusted well to our new house.  We were able to get him in the pool and he ended up really loving it.  We had such fun with him there.  I'm so grateful.  We had family and friends over to see him and that made it even better.

keepin' cool.

Erik laughed, kidded and, of course, enjoyed his meals.   Oh, it was great to see him throw his head back and laugh real hard.

He did the same old "Erik" things, wanted to show off his watch and the contents of his wallet numerous times.   He kept talking about singing so we put on some hymns and Erik sang along.  He sang with such sincerity and tears in his eyes, it really was a "holy moment".   You know it's interesting, he doesn't have the same hesitation singing that he has with speaking.

What's in your wallet?  Erik will be happy to show you what's in his.

I learned some things while Erik was here.  

1.  Don't ask him to make a decision or to choose.  Just make it for him.  Too many choices - his brain can't process them.

2.  It's going to take a while for him to do personal things - longer than usual.  My husband helped him shave, brush his teeth, and get dressed.

3.  It's a really good thing he agreed to wear disposable underwear at night.

4.  Erik doesn't sleep through the night anymore.

5.  Adjusting to change isn't as easy as it used to be.
I would guess that most of these are normal old-age related issues, right?

6.  And last, but not least, Erik loves his group home.  He mentioned some of his friends there the 2nd day he was here.  I asked if he missed them and nodded.  As much as he loved being with us in his old hometown, he loved returning to his friends. (more about that in a future post)  That fact gives me such comfort.   Being a long-distance care-er is hard enough but knowing he's so happy where he lives is a blessing to his family.

I guess all who see a loved-one lose their mental abilities through Altzheimers grieve at the loss of communication.  We're grateful that he's not belligerent, angry or hard to be around.  But we miss the old Erik who could converse in depth, tease even more, and tell you ALL you needed to know about the TV schedule or the bus route or the weather report -- areas in which he was the expert.

If any readers are experiencing life with an aging Down syndrome adult I'd love to hear about your experience.  I hope your summer is going great.

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.

June 22, 2011

Neighbors, old and new

neighbors old
I just returned from a funeral that left me grateful and awe-struck by a life well-lived. I feel blessed because I was privileged to know this person who touched Erik life -- and thus, mine too.

Bonnie Ewing passed away last Sunday after a difficult bout with cancer.  She and her husband, Mort, were Erik's neighbors during the time he lived in the condo near the hospital and that's how we came to meet them.

I knew from the few times I was around her that Bonnie was a kind, fun, friendly woman. After hearing her son and her pastor speak of her today I learned she was also a serving, caring, encouraging, welcoming, tough, and devoted woman.

What an example she is to me. She loved well right up to the end of her 85 years.

When Erik lived next door to her she helped him when he needed it. I'm sure she came to his rescue in more ways than we know.  Sometimes Erik's garage door wouldn't get closed and Bonnie would watch out for that. Whenever Erik couldn't unlock his front door he'd head over to Bonnie's and call dad or me. When Erik visits this area he always wanted to stop by their house and say Hi -- and Bonnie and Mort were always so happy to see him. 

You know how when we move somewhere we wonder: who will we meet in this new place? We didn't know sweet Bonnie would be next door when Mom bought the condo for Erik. It was one of those delightful blessings.  Proverbs 31 was read at Bonnie's funeral.  One verse stuck out to me:  She opens her hand to the poor, yes she reaches out her filled hands to the needy. v.20

neighbors new
Two weeks ago our family moved into a new house. I've not written in quite a while because the move was so much work.  And ugh, the Texas heat really wiped us out.   

But then, after a few days of unpacking, I was humbled and struck by God's hand in our move -- our neighbor came over to say hi.  Sitting on our couch were his sons:  identical twin 14 year old boys with Down syndrome.   We didn't know this when we bought this house but our Sovereign God did...and I'm so amazed at His leading. I hope so much that they will be my friends and I can be theirs...and that one day Erik can meet them!!!