more on Erik's influence.

"What do you like about Erik?"  

FROM UNCLE BOB

 It has been a long time since I last saw Erik so I am not sure what he is like today.  But, one of his strengths is that he is (most of the time anyway) in a good mood, ready to joke around and tease.  

 One time when we were at Mamie's, he and I were out in the car and he started with, "Uncle Bob you are my favorite uncle."  We talked about that for a few minutes before he said,  "Oh Uncle Bob, I sure am hungry for some good old Memphis barbecue. I told him I was as well,  "I tell you what Mr. Moneybags, why don't you take me out to lunch?  I'll drive us there and you pay." ( He had been bragging about how much money he had.) "No, Uncle Bob, Mamie wants you to take me for barbecue.  I'm not supposed to pay for you."  This went on for about 10 minutes before I gave in and took him to get barbecue.  As we ate, he let me know how much he was enjoying it, and on the way out he said, "You and Uncle Ed are my favorite uncles!"  

FROM UNCLE ED

   His sweet and gentle nature...he is very sharp and has had a great memory..I always love to tease him because he takes it so well...He has a good heart.. He is an inspiration to me because I never see or hear him complain..He has a great attitude and is an example for others to follow.

FROM MY HUSBAND, MIKE 

I like that Erik is kind to people.  He's rarely cross with people, and then it's usually when it's provoked.  I like Erik because he prays for me, and I believe that God listens to him.   Erik is a hard worker who focuses on his tasks, and that's an amazing quality.  He takes initiative to express appreciation, and that's a tender thing to see in him.  Erik enjoys people, whether they be familiar friends or strangers. 

I met Erik when we were both in our young 20's and I was dating his sweet sister.  I knew by marrying Liz that Erik would play an important role in the rest of our lives together.  Being with Erik teaches me to slow down, not to be in such a rush, and to enjoy people. Having Erik as a brother in-law has also challenged me to be less self-centered and to think of others' needs.  In Erik, God has given me a constant reminder that if you extend kindness to "one the least of these, you have done it unto me."  When I read about God's defense of the weak and His calling to us to defend the weak, I know God is thinking about Erik (among many others). 

 anything else to add?

It's fun to see Erik laugh.  Yes it is!

nnnnn

"I was slightly brain damaged at birth, and I want people like me to see that they shouldn't let a disability get in the way. I want to raise awareness - I want to turn my disability into ability." - Susan Boyle

Erik - more stories

A few weeks ago I sent a question to some of our family members asking "What do you like about Erik?"  I received the response below from Rachel, who married our step-brother, Chris.   She's known Erik a long time and her beautiful answer was a little trip down memory lane.  Thank you Rachel.

"What do you like about Erik?"

I love Erik because he has such a sweet, gentle child-like nature.  I don't think he has a mean bone in his body. He always has a beautiful smile on his face.  I remember when I first started dating Chris...Erik liked Bernadette! (Erik's long-time girlfriend)  EVERY time I would see him he would pull out his wallet and show me a picture of Bernadette and I got to hear stories about her.  He made ME feel important because he was sharing with me.  Chris, Ashley and I had so many good laughs and good times with Erik.  

I also remember when he lived with that lady for a while....there was the coke money saga.  Erik would spend his weekly money on diet coke and he wasn't supposed to. I remember your dad would give him envelopes with his weekly money in it.  I can't tell you how MANY I would hear your dad on the phone with Erik in the middle of the week and he was out of money.  Remember when the lady he was living with said Erik wasn't changing his underwear? That was a whole ordeal! (well, unfortunately we're still dealing with this one)  CUTE stories!

But, the best one of all is when my dad had surgery at Baylor (hospital where Erik worked.  Read about it here).  My mom and I were in the waiting room and Erik frequented the hallway near the waiting room.  He was like a celebrity!  SO many people knew him and you could tell they thought so highly of him.  I bet I heard 30-40 "hello Erik's!"  I wanted to tell the whole world that he was family.  

Erik is just a one of a kind person.  Even Lexie (our dad's dog) finds gentleness and something special in Erik.  She chooses Erik's lap over most others.  The last time I saw Erik at Christmas, most times Lexi was curled up in Erik's lap!  

This makes me smile. Erik does have a way with animals.  Erik and dogs seem to communicate love and acceptance to each other without words.  

And, oh my, Erik and his sodas - tread carefully, that's dangerous territory.   He'd finish work and that would be his reward.  He'd day "Dad told me - drink diet!" then he'd pat his belly and say, "cuz, you know".

through Erik's eyes

Our Aunt Diane recently shared this memory of my brother with me:

I always loved Erik -- and have so many memories of him playing the guitar at Mamie's and singing "Little Green Apples".  I will never forget the lesson he taught me when our families met at the beach one summer. He and I would go out shell hunting and he would come back with every shell he found -- whether it was broken or not -- he treasured every one.  By the end of the week his washed shells covered the railings of the deck!  I have told that story many times because I think we all need to be able to see beauty like that -- even in the "broken" things of life.

beauty in the broken things.

siblings in the 60's

We grew up in the 60's.  

Shag carpet and paneling were in the living room. Our mom had a crazy beehive hairdo.  Our parents listened to Herb Alpert and Frank Sinatra. In the above picture Becky and I are wearing dresses made by our dear grandmother Mamie.  Erik's holding our puppy, Hopi.  I'm guessing it was Easter Sunday and my mom must have been expecting our younger brother.

Same room, younger brother has arrived.  We're sitting on that long, white couch that seemed as large as a boat to me. 


I love these 2 pictures.  They make me think of much simpler times.   They also cause me to ask...what would our family have been like if Erik hadn't had his handicap? 


What would it have been like for us to have an older brother who filled the role of an older brother?  Would he have been bossy...or protective over us?  Would he have resembled our mom or our dad more in his personality?  What would he have pursued as a career?


Because of our situation there was a time when Erik and I were at the exact same developmental stage. Then I passed him up. I assumed the role of first born even though I was born 2nd.  So later on, I babysat endlessly, I had to be responsible but I got to be the bossy one.  (Watch out.)   


If Erik hadn't had his handicap I'm sure that today I would not be managing his legal, financial, medical or travel affairs.  If he hadn't had his handicap he might be a husband and a daddy today.  He wouldn't have needed to trust every cashier he's ever done business with -- that they are taking the correct amount of money from him and giving him the correct change back.


These 4 kids on the couch are grown up.  The baby brother is now an airline pilot and daddy, younger sister is now an involved wife and mom of 3, I'm now a wife and mom of 2...and Erik is Erik.  We love him just as he is and wouldn't change a thing about him being our brother.  His life has been amazing.  My heavenly Father is sovereign; He makes no mistakes and I'm glad to know that and trust Him.

Down syndrome - a look back

I wish I could remember more of Erik from our childhood.  He was 16 months old when I arrived.   Even though we were so close in age, I recall more about my little sister than I do about him - probably because we shared a room and got into arguments.  Even though I don't remember arguing with Erik when we were growing up but I suppose it might have happened.  

So, seeking help, I recently I sent a questionnaire to many of our family members asking for their thoughts and memories about Erik.  One of the questions I included was:

 "What were your memories of Erik when he was a baby or a little boy?"  

I received this from our mom:  When Erik was born I had to grow up and I felt a sense of responsibility that I may not have had otherwise. And it gave me a deeper feeling for other peoples difficulties. As a baby Erik was very good, he almost never cried. He was so undemanding and easy to care for. He learned to walk when he was a year and a half. Then - he was so cute!!  As a little boy he was very sweet. I can not remember him giving us any trouble ever.

Erik was such a cute, happy guy!

more responses: 

From our Uncle Ed:  I will never forget that smile...Also I loved to watch him dig into his food...man was he focused!

and from our Uncle Bob:  I learned so much from Erik.  He loves so fully and is so faithful.  It took me a while to see that he came to our family to teach us about people who are different.  He added not only his love but also his spirit of fun!  And I think all of us were his favorites!  When he was born I was so shocked and sad to learn that he had down's.  I was afraid at first because I had never been around someone like him, and I think I assumed he would not become a real family member in the sense of contributing much to our lives.  But when be became an Elvis fan, his personality spilled out all over us.  His knew how to have fun, and soon it was so obvious that he has an enormous love for those around him.  Of course, there have been many difficult decisions to make about what kind of expectations are reasonable, but he taught us patiently that he could do more than we ever imagined.  And he has adapted to each change in his life with an uncommon patience. 

(More family feedback to come.)


Some down syndrome babies begin their lives with a host of added handicaps.  They might not gain weight or feed well; or they might have heart trouble or get sick easily.   I'm grateful God spared my parents from those issues.   
They already had a lot to handle with Erik,
then me (who battled a difficult childhood disease),
our sister (who was perpetually active and loud when she was little) 
and our youngest brother ("the baby" who was so adorable we couldn't stand it)


I'd love to know if any of you have memories of babies/toddlers with Ds you might like to share.

With Erik, some things never change.

We went to see Erik over the weekend for his birthday.  It was a good day not only because we saw him - but unbeknownst to us - our sister Becky and her husband Tad decided to go see Erik too and we arrived at Aldersgate Enrichment Center about the same time.  Wasn't that neat?


In the past, whenever we would go visit Erik he would be waiting on the front porch for hours before we arrived.  We'd drive up and see him sitting there, smiling and waving. 


This time I didn't tell him we were coming because I thought it would confuse him.     So when we arrived he wasn't sitting on the porch.  We found him inside on the couch with the resident dog Samson.  


He's still slowing down and conversation is a challenge but I found myself thankful for the little ways in which Erik has not changed.

We arrived, he got up off the couch, came over, hugged us and ... yes, he was wearing his Cowboy cap and had a soda in his hand. Not surprising at all.

We walked to his room, in the other group home...

... and there, Erik sat amidst all his Dallas Cowboy finery and proceeded to ask many times "How's Dad?"   "How's Brian?"  That's Erik's M.O...find out how people are doin'.

Later another classic Erik moment (which was repeated several times) - he took out his wallet (notice the brand) and showed us the money that was inside.  The residents had just returned from getting their paychecks cashed and the wallet was pretty full of ones.   It's so funny, Erik does this in such a serious way, like he's letting you in on a secret.  Often times we'll be in the middle of something and with no warning, out comes his wallet and he's flashing his cash - or showing you whatever else is in there. Oh my goodness, our Uncle Ed loved it when Erik did this.  He called Erik "the King" and Uncle Ed would suddenly develop "the shorts" and he'd implore Erik to slip him some cash.   Erik was wise to his tricks and never obliged.  

It was lunchtime and we asked Erik if he was hungry.  Well, that's like asking a fish if he's wet.   So off we went to get some birthday bar-b-q.  Erik ate his food with the speed of teenager who hadn't eaten in days.   Becky had to tell him several times to slow down.   We don't know where he puts all his food.   But another typical Erik moment -- he showed us his watch, which he's very attached to.  It is a cool watch, keeps time with the Atomic Clock somewhere, so it is supposed to be the exact time.  If you ever need the very exact time, Erik will show it to you gladly.  But be warned, next to Erik's fancy-pants watch yours will suddenly appear inferior and sad.

Back at the group home Erik another thing that hasn't changed - Erik's love of animals.   They adore him too. This is Samson getting some good Erik attention.

Erik didn't tease, smile or laugh like he used to but his sweetness and gentleness are still evident.

One of my favorite things of the day was to see Erik and house-dad Pat interact.  Pat had a brother who had Down syndrome, so he and Erik are good buddies.  
Among other things, Pat told us that that at their last picnic Erik scarfed down 4 hotdogs.  oh my. 

April 23, Erik turns 51. Woo-hoo!

This Saturday Erik turns 51. I'm amazed that it's already been a year since he hit the half century mark. Last year many of us surprised him with a huge party.  It was very special to love him like that - and to see the love his group home friends bestowed on him.  Sweet doesn't even begin to describe it. 


I'm sad because this year he hasn't been reminding me of his birthday. I know he would if he could because he always started months beforehand and made sure we knew it was coming.  I'd always ask him what he wanted and he'd say "Surprise me."   


But on Saturday we're hoping to go see him in person and celebrate. Probably in a slower, simpler way than we used to, but that's ok.  Until then, here are some pictures of Erik and his by-gone birthdays...

this was taken at our Dad and Stepmom's. They pull out all the stops for him.

at our house years ago.    Erik's face is so priceless --- I love his expression -- soaking up the birthday love. Our brother Scott is close by to make sure he leaves no candles behind.  Looks like it was a baseball party that year.

clapping, cheering~ He got them all.  He looks so young here.  haha, so does Scott!

now it's time to wear the Birthday-King crown our daughter made for him and -of course- tease the brother.  

Happy Birthday to my sweet brother Erik.  

I will give thanks to You for I am fearfully and wonderfully made;  Wonderful are Your works,  my soul knows it very well.  Psalm 139:14

Down syndrome & paper football never gets old.

Erik has always liked games.  With 4 kids in the house it made for the perfect number to play.   Years ago, whenever we'd bring out a board game he'd join in.  We'd give him lots of help since the rules were tricky for him at times - but he liked being in the thick of it.   He'd not get angry or mad if he didn't win, he just enjoyed himself.   He liked Go Fish and Old Maid.  In his older years it was Uno.  

But when Mike came along (my hubby) he introduced Erik to a new game:  paper football.   Thus began the Mike and Erik paper football rivalry.  

There is no offseason.   

Supplies: a piece of paper and a flat table and dramatic background music.  

Paper is folded into a triangle football shape, sometimes decorated with a blue star - representing a certain Pro-football franchise.  

I, the devoted sister, cheer for Erik --- every time.

The following videos were taken when Erik lived with us in 2006.  He would have been 46.  Previously he'd been living alone, but had started declining.   Watching these is bittersweet for me.  Even though he was aging - compared to today - Erik looks active, healthy, interactive and smiling.  Oh my goodness, when he smiles at the camera it pulls at my heart -  there's the Erik I remember!

In these brief videos the competition was over and they were just goofing around, shooting the football at each other trying to aim for the other's nose. (it's a guy thing, I guess)  

I guarantee next time Mike and Erik are together, the football's comin' out again.

Erik's Band of Brothers (in-Law)

I need help in this life!  

However, my nature is to be self-sufficient. Since taking over more of Erik's care, I've had to remind myself a lot that IT'S OK to need and ask for help.  Thank the Lord, help is graciously provided.

Big Mike & Erik bowling.  He's telling Erik to go easy on 'im.

I can't write about Erik without mentioning two men in our family. First, my husband—"Big Mike"— as Erik calls him. When we were dating in college, Mike wasn't scared away by a special need family member; it made him more interested in me. Mike has a huge, compassionate heart, and lots of love to give. NOTE TO SELF: Don't let that kind of guy get away!


Mike has cared for Erik these past 26 years in so many ways; I could never list them all. He's listened to him; taken him bowling, to movies, out to eat, to visit friends.  He's driven him back and forth from Brownwood to Dallas; kidded around with him and been there for whatever he needed. One of the games they play every time they're together is paper football. Erik often beats Mike, which makes Erik quite happy. (top secret: Mike lets him win) I'll post a video soon of one of those games.


Second, Erik is blessed to have another brother-in-law who also fits this description — my sister's husband, Tad.   He cares for Erik with genuine love and sacrificially considers his needs. Tad and my sister often have Erik visit their family ranch, where Erik loves riding the go-carts with Tad.

Fearless.  Erik's probably wishing he could drive.

I like this picture of Erik and Tad, especially Erik's huge excited smile.  And don't they look "cool"? (One of Erik's favorite words.)


My words aren't doing justice to the gratefulness I feel towards Mike and Tad. Probably the thing that means the most to me is that they truly share with us in our duties and concerns for Erik. With him growing older and more frail, this is a huge help to my sister and me.   
Erik would definitely award them the GOLD medal for 

Brother Awesome-ness.