Last post. What blogging has meant to me.

I had many scary thoughts when I contemplated starting a blog about sweet Erik.  Mostly, "no, I can't write," ... "ug, I don't want to be that transparent," ... "what on earth would I say?"

Nevertheless, I really wanted to find others out there who were sharing the same experience.   "Where are blogs with aging Downs adults?" I wondered.   "Are the parents/siblings of these individuals not computer people or are they working so hard to care for their loved one they're just exhausted?" Over the 25 months I've been blogging there have been a handful of people in the same circumstance who have reached back to me for which I'm thankful.

Now, looking back, I'm so happy I wrote.  This blog gave Erik a voice.  It helped us include others in his life, especially family members and friends who loved Erik but didn't live nearby.  It has given me a priceless journal of the last 2 years of his life.  I enjoyed sharing all the funny things he did.  Friends who hadn't met him got to know him through reading.  From this blog, people from many countries around the world read about him.  This boggles my mind.    

As I wind down this last chapter of "Hi, this is Erik," I thought I'd list my favorite blogposts and why.  But as I spent time reviewing all the posts it became real hard for me to choose favorites.  I loved revisiting the posts where Erik was having a good day and was determined to shower me with sweetness. The memories they bring back are the sweetest in the world.  And the ones where he'd wordlessly communicate something--precious.  And I loved telling you about his interesting life, expecially how much he loved food, laughing, teasing and singing.  His simple sweetness was real and writing about it became a privelege for me.   

I thank you for reading.  For commenting.  For praying.  And going through this journey with us.  Your comments encouraged me in ways I could never express.  You helped me not feel so isolated.   I wish I could give each of you a hug.


Reader, if you have a family member with some kind of disability, I'm sure there are many who would love to know what your days are like.  I know I would.  We need each other.

And because I will always love seeing the beauty of someone like Erik living his life to the fullest, I wanted to share this link to the story of a young man who has taken what he does best and makes other's lives richer.

So, that's all for now. Thanks and much love from me.

A few more thoughts. Epilogue #3

Over the past weeks I've been learning and reading about other's experiences with Down syndrome. 
 I watched a documentary about a Downs couple called Monica and David.  From it I'm more convinced that families with special needs are as varied as all families.  And those who care for them have to do what works for them, even though it may be different from what others might do in their shoes.   I also read a wonderful book about a family, the mother of which wrote about her pregnancy and expecting a Down syndrome child.  It spoke to me so beautifully.  It's called Expecting Adam, an exceptional story of God's plan for this young family and their son.  

It reminded me of a few years ago when I was seeking reassurance that God was there for those like Erik.  I know the Bible fairly well and know the verses of God's promises of care for the weak and Jesus seeking out the forgotten.  But on that day I was wishing there was a verse, illuminated in divine, yellow light, just for Erik and me. I was probably feeling weary and worried.  I started looking for commentary from religious sources and stumbled upon something from The Vatican on handicapped children.  Even though I'm not Catholic, it encouraged me.  It said:  "It is impossible to even entertain the hypothesis that God might have been "mistaken" when He created handicapped children.  On the contrary, we must say that God loves them personally and that these children, thus conformed to the suffering Christ, are the object of His special tenderness."   I felt better and wrote it in my journal.  And later, God did give me those special verses.

Since we're on the topic of God's involvement:  over Erik's life, we commented often to each other that Erik had protecting guardian angels around him.  I think of the countless times he had to walk back and forth to the bus-stop when it was dark outside or the weather was bad, when he'd take the bus all by himself to the mall on his days off to go to the movies or he'd fly by himself to visit our mom in Colorado -- he was always under God's watchful eye.  About 6 or 7 years ago, when Erik was living alone at his condo, he invited a total stranger he met at a bus stop to come home with him to hang out.   Erik, gregarious person that he was, wanted a new friend.  This man, we surmised, looked around Erik's condo, discovered he didn't have anything of monetary value and just left.  But that could have ended differently.  God's special tenderness and protection was at work that day, as it is for you and me.

Erik used to sit on the front porch of his group home waiting for us to arrive.  "Hey, are you so happy?" he'd ask.

A bit more to come.  Love to you.

What now? Epilogue #2

Over the past years, I found comfort in writing about Erik's day-to-day life,  about "Erik and me" -- a little team.  Now that he's gone  I don't really like writing only about myself but I figure there may be other readers out there who have lost "special" family members too.   So I'll try to share my thoughts a little more.  

 Since late Demember, I've swung between two feelings.  

#1:  what now? 
I'm a "task-fulfiller".  I was so accustomed to tending to Erik's care and managing his days.   Walking into his room, wondering how I'd find him.  Going to see him on Sunday after church and drop off his laundry.   Buying toiletries, new items of clothes, bringing him Cokes for his little refrigerator.  Taking care of his insurance, doing his taxes, arranging medical appointments for him.  Calling his care-givers. My sister and I pre-planning his funeral.  Full days, that stretched me.  Days are different now.  It's taken a few months for me to develop rhthym with new tasks.

feeling #2.   lay it down.
I felt like I have been carrying an invisible box around for a long time.  In it was all my concern, worry, and care for Erik's present and his future.  Now it's time to put the box down.  And it's ok to put it down.  And it's good to breathe without the worry.   And it's ok to move on to the things I put on back burners.   I'm a little lighter inside without the concern I carried.   And peace is there, a feeling of "I carried the box around the best I could."  And Erik is rejoicing in heaven.  I try to imagine it.  But it's so beyond our imagination.  Fun to try though.  I bet he's SINGING!

I've had 2 dreams about Erik.  The night we found out Erik passed away I dreamed a vivid dream that he was lost and I was desperately, frantically searching for him.   A few days later I dreamed he became alive again and he was still struggling with all his health challenges and I had to ramp up and start all the work of tending to him again.  I'm waiting for more dreams about him.  I hope they come.



Thoughts on Loss/End of life:

I went to get a Subway sandwich today where Erik and I had gone.  I'm in stores where I routinely bought things for him.  There have been memories of Erik all over my little community. I drive by his 2 residences and can see the windows of the room where he lived and struggled.  Sadness would come. When I drive by and see those windows, I have to turn to the Lord.  What a comfort to know Him at times like these, reach out to Him from the depths.   And He understands.
I know He understands because of what He whispered to my heart one second after I recerived the news that Erik was gone.  Two words kept repeating over and over in my mind:  "Unspeakable Joy...unspeakable joy, unspeakable joy..."  It was 4:30 a.m. and I had to wake up mom, call my sister and everyone else, but those words were there over and over.  It was a message from God to me of the state of Erik's spirit at that very moment, present with the Lord at last!  God is helping me turn sadness to thanksgiving.

Erik became like another of my children.   A child who was a grown up.  Someone we hadn't had a real conversation with in over 4 years.  And someone who became more like an infant at the end.  Couldn't feed himself, bathe himself and - near the end - couldn't sing anymore.   You can't help but learn something when you watch someone you love lose those things one by one.  I think I learned to be more grateful.  When Erik began to refuse food and liquid - and eventually medicine - we knew his time was short.  His body was getting itself ready for his final journey.  Hard decisions were made during those days.  In the last few weeks, keeping him comfortable ruled out.   I had benefitted much by reading a book called Final Gifts.  It's written by hospice nurses to educate about the end of life.  I've had time to reflect on the dying process.  Our bodies are made to receive nourishment.  When we're at the end of life we don't need that nourishment any longer and we shut down. As a Christian, we're made to need nourishment from God in His Word.  We die when we don't take that in.  God used Erik to show this to me in a real way.


more coming.  thanks for reading.  Love from me.

Hi again! Epilogue #1

Hi again!

I received this facebook message from a friend a couple of weeks ago. She has a sweet teenage son with downs.

Hey Liz! I haven't seen many posts from you. Just wondering how you're doing and dealing with Erik being gone. Still praying for you! I don't know if I told you or not, but his funeral was so great. I've never laughed so much at a funeral!


I responded:

Your note touched me so much--that you'd write to check on me. Thank you.

I am doing fine. Of course experiencing feelings of missing Erik, wishing I could see him. But immediately find comfort in knowing where he is. But doing fine. I'm new to this kind of grieving, and assume it will take time. I'm still tying up loose ends with his medical bills and I have lots of his things to go through in the garage when the weather gets warmer.

I've been wondering what to do with his blog now. Mike suggested I write one more post, like an "epilogue". I'm open to that idea but just haven't acutally done it. I think I'm sad to end the blog.

I love what you said about his funeral. I agree, the laughter we shared that day was such a dear, sweet blessing to all our family. I loved laughing about him and the thing is -- there were so many more stories we could have shared that would have lead to more laughter. Wasn't it wonderful to laugh at a funeral?

How's C doing?  Hug him tight for me.

She wrote back:

I think a final post would be great. I still think about Erik and you a lot. We are doing okay. C is doing great. Every kid in his high school got new ipads. He loves taking pictures and videos of himself on it. I'm planning on downloading some apps that will help him. A friend of mine who works for the Bureau of Education and Research sent me a thick book full of apps for special needs kids. C just got done with basketball and is going to try soccer for the first time. He's playing for a team in Coppell. He's gone to one practice and their first game is Saturday! His school's "Grand Ball" is coming up in March, which is like a special needs prom. He is so excited for that. He dances all night. I'm sure I'll be posting some pictures from that. Take care!

So, encouraged by her and others, I'm back.  Even though I haven't written here since December, this place was never far from my mind.  I just needed time and space to experience "life now".  

And I didn't really know what to say.  

And I am sad to end this blog.

After reflecting, I decided - I will write more.  Just a bit.  I have more to say about individuals who are like Erik and my friend's son.  And how God uses them so beautifully.  

So, ok.  This can be Part 1 of The Epilogue.  :)  Thank you for reading.   Love to you all.

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.