My Tribute to Erik

shared at Erik's memorial service:

Erik Barret tribute -- December 29, 2012

By Liz Sobolik

First of all, all our family are touched by your presence here as we remember Erik Barret and what a unique person he was, and such a precious part of our family.

 He was our parent’s first born child. Erik with a “k, which is the Norwegian spelling, and also the name of a Viking king.  Born in 1960 my parents were advised to put him in an institution, told that he’d never really be able to achieve much. They never considered that option, brought him home, and enjoyed Erik who turned out to be the happiest baby.  You know that those with Down syndrome possess an extra chromosome and I wonder if that little extra makes them such gentle people to be around.

Growing up, Erik was just a normal part of our lives.  He loved to tease.  I used to put my hair up in pink foam rollers at night (a lot) and Dad would call me Ruth Buzzi (an old TV character).  Well, Erik loved tiptoe-ing over to me and whispering “Ruth Buuuu-zzi” cracking up when I’d yell “stop!”  Of course, telling him to stop only egged him on.

He loved to sing and play guitar.  It didn’t matter that he didn’t know how read music or sing the words with the correct rhythm, he did it with all his heart.  Our cousin Ashley wrote a few days ago:

He loved music and would sing Elvis and Glen Campbell songs any chance he could get. My fondest memory of him was his version of Glen Campbell’s "Little Green Apples" sung very loudly while strumming his guitar

That’s so true. He performed at talent shows as Elvis or George Strait and belted out songs. He danced at weddings like a pro.  He relished good food.  Mom took him to Disneyworld for his 40^th birthday and I tagged along.  He pointed to the scariest possible ride and said “Hey, let’s go”. Oh my goodness. If there was a dog in the room, the dog would seek Erik out because the best lovin’ any dog could get would be got right there.

When I became engaged, Erik really bonded with Mike. The first time that the 3 of us went to lunch was to Grandy’s in Irving.  Mike wanted to chat and get to know him but Erik had chicken fried steak and gravy and a hot roll sitting in front of him.  So, he calmly said to Mike, “Eat now, talk later”.  It must not have worked very well because he then looked for another way to get us to let him eat in peace.  He said “Mike, look at Liz, Liz, look at Mike!”

Erik was also thoughtful to the ladies or “yadies” as he said.  He’d hold the door open for us saying “Yadies first” smiling, with his arm extended like you were royalty.  One woman who worked with Erik in his group home in Brownwood told me that Erik would watch for her every morning just so he could hold the door open for her when she arrived.

Erik never met a stranger. He was the best welcome committee you could want.  A new family would move into the neighborhood in Irving and he’d ride his bike over and introduce himself.  His choir performed at a large religious convention at he’d go right up to important people and shake all their hands just enjoying meeting them.  He’d say “Hi, I Erik”.   Speaking of that, he loved calling his friends and family after work.  He was living in Irving or in Brownwood, he’d call with his little stutter, “Hi dis is Erik, How you been doin?”  Sometimes he’d call and inform me “Liz, it gonna rain” … or sometime in October, “ Liz, my birthday --- iz comin - April 23”.  Making sure we didn’t miss it.  Or he’d call and tell me something that someone wanted him to do that he didn’t want to do (usually involving something not very pleasant) and he’d end the comments with “I don’t like that!”  Despite his handicap, he defined himself, had his own mind and made his wishes clear.  But the calls I’ll remember most from him were, twice a year, to tell us that we’d better remember that daylight savings was coming.  There should have been a national role that Erik could have filled for “Daylight Savings Time Enforcer”.  He told everyone about it, every day multiple times a day, concerned they would miss it and their watches would be wrong.  Erik loved his watch, especially knowing it had the correct time. 

His watch also played a huge role in him being such a model employee in the Irving hospital, dependable, conscientious and extremely punctual for 27 years.  

When his work day was done, he’d go home get his favorite cold soda, sit in his recliner, let out a huge, contented sigh, happy to rest after such a physically demanding workday.  He was on his feet all day at the hospital collecting linens from every floor, lifting large bags and pushing heavy carts.  All that probably kept him so healthy.

More on Erik’s teasing:  Whenever he and Mike would ride around in the car Erik was at his best.  Without fail, he would say “Hey Mike, you missed yor turn!”  Or he’d start with his brand of knock-knock jokes.  Such as:  “Mike, Knock knock!”  “Who’s there?”  “Hair”.  “Hair who?” “You have hair on your head” then he’d sit back, so proud of his wit.  Or they’d be riding around in the car and Mike would clown around with Star Wars movie lines.  Soon after, Erik started to say “Mike I am yor father” and laugh as Mike would respond ”NOOOO!”  

We will never forget:  Erik had a history of becoming attached to his pajamas.  I bought him a blue plaid pair about 6 years ago.  I will forever regret that I didn’t buy 3 pair of them because they developed holes in the bottom.  So I wanted to replace them. Erik was aghast.  But I bought new ones (not blue plaid), I hemmed them, put them in his guest room when he was visiting our house. He saw them, brought them back to me in the kitchen with a look in his eyes like “are you kidding me?”  “Erik these are your new pajamas and they are going to be wonderful, no holes!”  He went into the room, locked the door, hid the new ones in the bottom of a closet, changed into the hole-y blue plaid ones and came back out so happy with himself.  I tried and tried over the years but didn’t win that battle.

So as you can tell, Erik developed marketable skills, a sense of humor, and a responsible nature.   When he began showing signs of Alzheimer’s he retired from his job at Irving hospital and moved to a group home in central Texas where he continued to work part time.  Then he declined more and a year ago we began the process of moving him back to this area to be closer to family.  As a result, the past 12 months have been so special to me.  I was able to spend lots of time with him.  In his assisted living home he continued to tease me.  He’d point to the corner to direct my attention over there and then try to take something of mine and hide it or tickle my arm or anything he could - to get me.  We’d hit a balloon back and forth and he’d try his best to hit it right into my face, that always got him in stitches.  Precious memories.  All the older ladies loved him, I mean lavished love on him.   I saw him once walk up to a group of them wearing a new hat -- they all went crazy over-- and he ate it up he then did this: (point to his cheek for a kiss)  He was irresistible to them.

There are countless reasons we loved having Erik in our lives.  Many ways God used him to change me.  God used him to help me to slow down in my fast-paced life, develop patience and bear with someone who needed to be listened to and accepted.  God used him to model childlike faith.  For years whenever we’d be talking and he heard that I or someone else was sick or sad he’d say without fail. “Aw, I pray for you” “I pray for them”.   Or he’d call and say “Yiz I prayed for you”  Such love. It was so precious to watch and hear Erik sing hymns to the Lord.  There is one CD of hymns we sang to for 5 months as I drove him to work and back when he lived with us in 2006.   In the past couple of years I think singing hymns meant even more to him because his eyes would fill with tears as he sang them.  In Brownwood he sang at his home church with such love and feeling that he was invited up to the front of the church to help lead the singing every Sunday.

When Erik lost his ability to speak about 4 years ago he still found ways to show himself to us.  He’d point or give a high five or use hand motions.  One of my favorite memories during the past 4 difficult months he spent in the nursing home as he kept declining was:  one day I was sitting on a bench and he was next to me in his wheelchair. I was trying to find a way to connect with him and it was getting harder and harder to do so.   He must have noticed my hand just sticking out, and he slapped it like he was giving me a high-five.  I looked at him and for a brief instant saw the old teasing Erik smiling back at me.  The last words we heard him speak were “Hi, Mike” when Mike and I walked into his room about a month ago.  He said them like it was no big deal, but it meant a lot to us.

There’s a Bible verse in 1 Corinthians that says:  The eye cannot say to the hand, I don’t need you and the head cannot say to the feet, I don’t need you.  On the contrary, those parts of the body that seem to be weaker are indispensable.   As I look at that verse in regards to Erik: even though he was mentally - and later physically - weak, in God’s eyes he was indispensable.  We all had to learn to care and love in a more significant way than we would have without knowing him.  What a true blessing from God he was.

Now....

It's been difficult to know what to write on Erik's blog.  

We had a wonderful memorial service for Erik.  It was so uplifting and there was a lot of laughter.   I was so honored to stand up and speak about Erik along with my sister and brother.   I usually hate speaking in public.  But on this day, it was such a privilege to speak about him -- because I was overflowing with gratitude, gratitude that he was my brother.  My son and my sister's son played their guitars, leading us in hymns.  We had an informal sharing time when people stood up and shared memories of Erik.  Seeing and visiting with family and friends who attended was one of the biggest gifts I've ever received.   

Now comes remembering, grieving, adjusting to change and resting. 
  
Erik has been such a huge part of my life for so many years.  I've really never had to go through this kind of loss.  I will miss him.  When I drive around our little town, the roads used to lead to him.  Our garage is full of his things, many Dallas Cowboy things.  

But the thought of Erik in heaven, healed from all mental disability, completely made whole, experiencing life and joy in abundance -- fills me with such wonderful peace - deep, deep down.  It's hard to verbalize because I'm not sure we have adequate words on earth to describe what I think Erik's experiencing at this moment, but I know it's good.  And, because of my faith in Jesus, I know that I will see him again.

Soon, I will post my tribute to Erik and my sister, Becky's tribute to him.  As I wrote mine, I almost began with this but ended up deleting it because of length:   Sibling relationships are so strong.   I read a book recently about how a person's first memory was important because it held some kind of special meaning into that person's life.  I'm not sure if that's true but as I was reading the book I started considering what my first memory was.  I thought it was something regarding kindergarten.  But a few days later another early memory arose,  and it involved Erik.  Our parents had taken us to a church, one that we had only started attending and we had to drive a long way to get there.  Erik and I were placed in the same Sunday school room.  While there, 2 other boys started speaking unkindly to Erik because he looked different.  And I didn't like that.  So I remember giving them a piece of my mind.  That was so unlike me - to stand up to bullies like that.  But even at a young age I guess protecting Erik was built-in, no matter the cost.

Thank you for reading and taking an interest in our amazing brother.

Erik

We received a call a bit before 5am that Erik passed into the presence of Jesus.   He's free from the struggle, free from pain, experiencing joy like never before.  We will miss him.

Darkness and Light

For many weeks now it hasn't been easy to write a post about Erik.  He isn't doing well.  Difficult, hard decisions to make.  He has been receiving hospice care for a week now.  I don't wish to go into all the details here, right now.   Our mom arrived today to spend the holiday with us and she got to see him, which was so good. 

I am standing firm, trusting God's sovereignty in everything.  Pray with us for precious Erik.  Ask the Lord to comfort him and cover him with his loving presence.  

Thank you and Merry Christmas.  There is always reason to praise and thank our God, even when things are hard.

The light (our Savior) shines in the darkness (our broken, sin-cursed world), and the darkness has not suppressed it.  John 1:5  

The Light is triumphant every time.  And that comforts me.

Sweet Brother of Mine.

Yesterday while Christmas shopping I received a phone call from the head nurse at Erik's facility.  She told me Erik's weight is remaining a concern despite recent efforts to boost it.  Not good.  I stopped by to see Erik on my way home.  (Earlier that morning when I saw him he was sacked out in bed, sleeping in his crazy way: one eye halfway open.)   This time he was in the dining room waiting for dinner and brightened up when he saw me.  Did he recognize me?  His mouth looked dry so I got him some juice, which he downed.

The head nurse walked by and we were able to talk.  She decided to consult with his doctor, who happened to be nearby, about Erik's weight.   Before that, she brought a magic cup and an Ensure shake.  Erik promptly downed those, too.  I fetched another Ensure and down it went as well.  This was good! Erik was on a roll, 800 calories.

Then 2 medical technicians appeared to take Erik to his room.  They were sent to insert an IV.  So we went.  I stayed to help Erik "be brave."  But it was really me who needed courage, don't like IV's.  After 2 tries they got it. Erik is such a champ, I can't even begin to tell you. Well, after that, a sweet nurse, Joy, came in to take blood.  More poking with needles. Erik knows Joy, she's taken his blood before. She told me that whenever she's working with him, he holds her hand as she's taking his sample. And he did last night too. So sweet.

after all the tests were done.

Erik was remaining alert and smiling more.  I loved it.  I asked that his dinner be brought into his room because he never got his tray in the dining room.  It came and I helped him eat a bit.  We listened to some Glen Campbell and Kenny Rogers.  I was hoping it would trigger some memories in him of the songs he loved to sing.  Sometime during that time, Erik reached out to take my hand and hold it.  He hasn't done that in a long time either.  I was just thanking the Lord for His goodness.

I decided to try a picture of the 2 of us and asked Erik to smile and he did!

So, Erik's going to receive some fluids and we'll see how he's doing.   He's getting such good care and seems - at least lately - to not be in as much pain. I'm hoping today he'll eat like a little pig.  

:)  Blessings to you from Erik and me.

What the Eyes Can't See

Today I asked my husband, Mike, to write his perspective on caring for Erik.  Here is his post:

Since I've never written a blogpost post before, I'll ask you to allow me to place on the table my apprehensions about writing.  One of my apprehensions is that my writing style is not as conversational and engaging as Liz's.  Liz is casual and joyous while I tend to be a little more formal and serious, but that's ok if you know that up front. My greater apprehension is the topic that Liz has asked me to write about.  We visited Erik today and had a fairly deep discussion afterwards about our thoughts and feelings concerning him, and she wanted me to write about it. So this blogpost may be heavier than normal.  But she's asked me to write, so here I am.  Just consider yourself forewarned.

Today's visit with Erik was a mix of the mysterious, the miraculous, and the mundane.  Erik was sitting on his bed when we walked into his room, legs crossed and upper body bent completely forward as he seemed captivated with something microscopic in the deepest fibers of his blanket. What he sees in his blanket is a mystery to me. Is he fascinated with the blanket's design pattern?  Did he become obsessed with a piece of lint?  Or is something else happening that is completely incomprehensible to me?  I have no clue, but I'll lay odds on the Door Number 3.

He must have heard our footsteps because he straightened up from his blanket, met eyes with me and said, "Hi, Mike."  In case you didn't know, "Hi Mike" is the miraculous part -- he had not said my name in months. I should be grateful for this rare moment of awareness, cognition and verbal-ness, but I admit that his greeting primarily stirred in me a desire to hear and see more. He did manage to smile at me a couple of times during the remainder of our visit, but that was it. I am grateful for this, but I want more than this.

The remainder of our visit proceeded like most others. We fed him a snack. We watched him examine his blanket.  I rubbed his back.  Liz rubbed lotion on his hands. We said kind things to him.  He shrieked a couple of times, presumably from pain that came and went quickly.  After a time, we said our goodbyes and left.  Liz's eyes were red and filling with tears.  I wanted to "fix everything" but felt clueless.

Liz and I talked about our visit during the drive home. We prayed for Erik when got home. And we prayed about our questions concerning the mysterious, the miraculous, and the mundane of Erik's life.  It's a mystery to me, for example, why Erik has to go through such a thick mental fog in the sunset of his life. We believe in a God who can perform miracles, and I sometimes wonder why He has not brought healing and wholeness to Erik. And I wonder why Erik must continue to endure the monotony of a life where the most fascinating thing about it is his blanket. These are my questions, so to be fair, I should say that Liz's faith is much more straightforward than mine. She tends to take the Lord at "face value" and simply believe. I believe in the end, but often have to travel a labyrinth of questions before settling down and trusting God.

We have needed perspective through this caregiving experience, and as Christians we have looked to the Lord for what we have lacked.  He has provided perspective in abundance.  Far more than Erik's fascination with his blanket, life itself is mysterious -- who of us can say we understand it?  Liz and I are trusting the Maker of heaven and earth with the mysteries of Erik's life and health as we care for him.  As for miracles, there is no greater miracle than resurrection.  Liz and I are trusting that Erik's complete healing will come when Erik sees Jesus face to face.  And what of this mundane fog that Erik experiences each day?  Liz and I are trusting that our unseen Father in heaven is doing good through Erik's life in ways we cannot know.  I look around and see the compassion stirred in others because of Erik and know that the prompting of love is the work of God, even if Erik is unaware of how deeply the Lord is working through him.

To some, these thoughts of trusting God will seem like wishful thinking.  For me, they are like the very breath I need to live.  Without this simple trust, I would lack the capacity to love well, and what love I do have could grow cold in the blizzard of Erik's struggles.  Without this simple trust, I would just continue to have questions for which no immediate answers would satisfy.  I'm learning that, at least sometimes, trust is better than answers. Especially when trusting means I've found myself in the arms of our Father who knows us and cares. "See, I have engraved you on the palms of my hands; your walls are ever before me." (Isaiah 49:16).  I think that God thinks about Erik all the time and that Erik's name is engraved on His hands, so to speak.  I think that God thinks that way about all of us.

So I end this blogpost with no easy answers about Erik. No "happily ever afters" or a nicely tied bow.  Instead, Liz and I continue to hope in our unseen God and to believe that He is good, even when our eyes make us question what is happening.  And that is enough.

Mr. Erik - latest news

Happy Holidays!

I know I've not shared much lately about Erik. There have continued to be good days and not-so-good days. Some days he often cries out in pain. And his appetite is hit and miss. Below, he had to receive fluids via IV and his hand was wrapped up.  I could tell the tubes confused him. He seemed to find a little comfort in holding onto his soft neck pillow. 

Another day I found him in the lunchroom, totally sacked out because of some strong pain medicine. This was the day I found him holding a teddy bear beneath the table. Erik never woke up to eat.

Here he is - awake, more alert, shortly before Turkey Day. 

Then, I found Erik one day sitting Indian style on his bed, leaning over onto his crossed legs and falling asleep.  I got his neck pillow and teddy bear and propped up his head so at least he'd get some support. How can he sleep bent over like that? He just does.

Thanksgiving Day we had a large group of family at our house.  Sadly, Erik wasn't able to join us. After our meal, sister Becky, niece Sarah, and stepmom Carol went to check on Erik. Sarah so sweetly helped him in the dining room.

And while they were waiting for his food, Erik held her hand.

More hand-holding with Sarah. I think Uncle Erik is enjoying his niece a lot.

Sarah hopes to be a nurse one day. She'll be a good one.  Erik is greatly on our minds this holiday and in our prayers.

Warmest holiday greetings to your family from Erik and me.

Fatten him up!

The main concern with Erik's heath right now is his weight.  He's been losing steadily since he entered the skilled nursing facility at the beginning of September.   For a long time he wasn't in the mood to eat or he fell asleep while eating.   His meals were changed to mechanical soft, enriched with extra calories and he started getting an appetite stimulator.  We saw no change; so the dose was increased and now I think it's working.  Erik's eating, with vigor. 

When I visit I try to supplement his diet with a Magic Cup or a Mighty Shake.   These contain lots of calories and nutrition in a small package.  And Erik likes them.  

And he's holding it himself, another good sign.

Yesterday he ate a Magic Cup AND a Mighty Shake in one sitting.  600 calories.  

What else could I bring him that would taste good?  Wendy's Frosty?  Any ideas?  Gotta fatten this sweet guy up.  

The Beauty of Letters

Hello, everyone.  I hope this finds you well and enjoying this wonderful season.  I got to open a time capsule last week!  First, some background:  In the mid-80's when Erik was about 22 years old he resided in Dallas in a group home.  He lived with two or three other young men who had Down syndrome. They were cared for by houseparents and they all became very close to each other.  Erik still worked at the hospital in Irving during this time and, if I'm not mistaken, he took buses to and from work. Back then, he was a wiz at bus schedules; and TV guide schedules for that matter.

 During this time - in 1983-84 - Mike and I were engaged.  We were separated from one another; he in College Station, me in Irving. I wrote him pages and paaaages of letters. Long distance phone calls cost an arm and a leg back then.  Well, last week I didn't feel well; so while resting one afternoon I decided to dig into the bulging box of letters.   Along with the pining of love and telling Mike how much I missed him, I found several references to Erik. Oh my goodness, what sweet memories. Many which I'd totally forgotten.  I treasure these little stories even more today since Erik and I spend lots of time together but his Alzheimer's robs us of the gift of conversation. Would you like to read some of my treasures? 

I talked to Erik a little while ago and asked him to pray for you.  He said he would.  He said, “I miss Mike”  I said “So do I".  I told him you were coming Easter and he quickly reminded me of his birthday and that he wants a present. 

Saturday night we’re celebrating Mamie’s and Erik’s birthdays.  Erik’s birthday is the 23^rd and Mamie’s is the 24^th.  I know what I’m going to get Erik – yesterday when we drove to Ennis he said he needed a portable fan.  (at first I thought he said “van” and I screamed “Erik I can’t afford a van!”)  

Last night (Sat) it rained so hard for a long time there were tornado warnings all over our area.  Marble size (and bigger) hail fell on our house and I was in the den and it came down the chimney.  Erik and I were the only ones home and he was talking to Bernadette for HOURS and then he went into the kitchen and I heard him saying something, I don’t know what.  But I asked him WHO was he talking to?  A couple of minutes later he informed me he was talking to God.

Erik and I are having fun. He always does little things for me.  He LOVES to scare me!  I don’t know why.  Yesterday I picked him up from work and there were Christmas carols on the radio and he sang his heart out to me, It was great.  But when I sing for him it’s “Wiz, don’t sing!!"... Erik just opened a Christmas present from a close friend, Old Spice!

Today Erik and I went shopping at my favorite mall in Dallas, North Park.  I got to exchange some clothes.  Erik was so patient, he had to wait for me often ... I’ve got to stop writing and go to sleep.  I’m getting up early this week to take Erik to work and sing to him.  He’ll love it, I’m sure!

I talked to Erik on the phone and he asked how you were... and told me he prayed to God for me.

Erik told me on the phone yesterday, “Liz, I sure miss ya”

It was so funny – yesterday Erik and I were together and I told him I would be scared and lonely if he wouldn’t stay with me when our parents were gone and Erik said “Liz, Rolfe is there!”  I said, “But I need you too”.  He said, “Oh, all right.”  (I really have no memory of who Rolfe is, I think it was a stuffed animal)

Last night Erik called me and we had fun talking.  He wants me to bake him some chocolate chip cookies.  I want to do it but I don’t want to eat them so you may be getting some from me in the next 2 weeks.  How’s that?

When I was a little, little girl, and lived in or old house in Irving one day Erik and I somehow wandered out of our house and went next door.  I don’t know how we managed but we got into their backyard and went over to their pool.  (yes, very scary, we didn’t know how to swim and nobody knew we were there)  Well, Dad was in our backyard and happened to look across the fence and saw Erik and I.  He screamed because we were squatting on the edge of the pool looking intently into the deep end.  We had both thrown our shoes and socks in the deep end!!! Dad rushed over and got us.

I just gave the short letter you wrote to Erik to him and he read it almost all by himself!

Oh, I visited Erik today.  Mike, he has a beard and a mustache!!  I HOPE it’s gone by the time you come but I fear that it won’t be.

Ah, the beauty of letters. Especially revisiting them after almost 30 years.  I'm so thankful for my brother.  Blessings to you today.

Psalm 139:16  All the days ordained for me were written in your book before one of them came to be.