April 27, 2011

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.

April 25, 2011

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 20, 2011

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

April 10, 2011

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.

April 6, 2011

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.