December 26, 2012


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.

December 23, 2012

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.

December 4, 2012

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.

November 25, 2012

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.

November 24, 2012

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.

November 12, 2012

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.  

November 8, 2012

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 23rd and Mamie’s is the 24th.  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.

October 31, 2012

Welcome change

After several days of Erik being withdrawn, struggling with pain or fatigue, today was a welcome change.

When I went to see him at lunch he was eating well and seemed comfortable.

When I sat with him in the hallway afterward he was calm, alert, looked at me and smiled a bit.  This was precious.  You miss eye contact when it's rare.

His leg didn't seem to be bothering him as much and he wasn't as tired.  In fact, he was awake most of the morning, I was told, and was still awake when I left.

He pointed to various people as they walked by.
He noticed some balloons down the hall and pointed to them.
Erik said "Hi!" to a nurse at the nurses's station.  I'm jealous.

But the BEST thing that happened was...we were sitting in the hall visiting with some ladies and FOUR therapy dogs dressed in little costumes came to see us.
A little smile from Erik.  This collie was all dressed up as a fairy.
So sweet.
This one kept kissing Erik's hand.
I loved watching Erik tilt his head to look at this face as he stroked her.
What a blessing they were!

Erik's glasses were dirty so I went to clean them and came back drying them with a towel our sister gave him.  It's embroidered with a football and his name.  He seemed to like holding it and showing it to people.  I'm grateful that he seemed a little more like himself today and was more aware of the world around him.  Rejoicing.  :)

October 19, 2012

MORE Pajama Drama?

One of the nurse aides in Erik's wing is B.  She's a joyful, fun person.   She saw me this morning as I was heading to his room.  She smiled and told me that Erik has been "pushing her buttons."  She will get him ready for bed, dressing him in the hospital gown they regularly use and wouldn't you know, Erik really doesn't seem to appreciate this bedtime attire.   B walks by his room and sees him sitting up, signaling with his index finger "come here!" She'll go in, find that he's taken off his hospital gown and rolled it up into a ball.  She puts it back on him, talking to him nicely about how he needs to leave it on.  But I ask you, does he?

I have Erik's old, threadbare blue pj's folded in my laundry room right now.  Sometimes I see them and remember what a power struggle we had with them.  And I think, "Well, I guess he's forgotten all about these pj's."   Well, now I wonder.   

Did I ever tell you what Erik would do with pj's when he was little?  He loved his pj's so much he would roll them up and stuff them under his pillow when he got dressed in the morning.  Then at night, he'd get them out and wear them to bed.  My mom never caught on that they weren't showing up in the wash.   Until one day a horrible smell permeated his room and they were discovered under the pillow.   Erik was upset to see them promptly going in the wash because they had become so soft and he liked them just as they were.

You may remember how particular Erik is about pajamas.  (If not, visit this post or this one

Another nurse told me today how she found Erik sitting up Indian style in his bed.  He's not tried to get out of bed by himself, thank goodness - I don't think he'd make it on his own.  When he's awake and alone in his room he clearly makes his presence known.   Sometimes he lets out a strange wail or yell "Hey!" as someone walks by.  The other women in the hall tell me they've gotten used to it and it doesn't bother them.  I sure hope it doesn't.   Another nurse aide walked by Erik today as we were sitting in the hall.  She leaned down close to him, curled her finger around his finger, kissed his head and sang, "Erik, my Erik, my Erik and me!"  She said that's their little song. I love that. I love it that Erik is receiving such sweet care in spite of his little protests.

October 14, 2012

My Rock

I think Erik's feeling a bit better lately.  A week ago I wouldn't have said that.  The leg with the blood clot was swelling up bigger every day.   I didn't like it and I'm sure he didn't either!  I went to feed him lunch last Tuesday.  He was very agitated, upset and NOT hungry.  And so unlike Erik, he screamed at me at the top of his lungs over and over as I tried to feed him.  It made me cry.  Just felt helpless and confused.   But his nurse came in and I was able to urge her to look into the swollen leg issue.   She did and that's why I think he's better. Two days later I went to feed him lunch again. I didn't try to engage him in conversation, I just sat and helped him eat.  It went better, maybe because his food is being mechanically ground now so it's easier to swallow, I really don't know.  Here he is that day before lunch arrived.

He even smiled and laughed later on.  Wow.  My husband and I saw him on Friday; he was alert, seemed more at ease and engaging more with the people around him.

I just never know what each day will bring; I tease Erik all the time -- that he's just a mystery and that life with him is a roller coaster.  This afternoon he was snoozing away in his bed, looking so restful.   

The past 6 weeks have been some of the hardest we've had.  But I'm grateful for the things I've learned and that Erik is ok and that our mom will arrive tomorrow to see him.

Not long ago I was worrying constantly about sweet E.  I knew I needed to trust the Lord and I'd try -- but find myself worrying again.   Then I think the Lord gave me an idea.  I needed to latch onto a character quality of God for the week.   Whenever I'd get overwhelmed or worried, I'd remind myself of that truth about God.  The first week I picked His Power.  Last week it was His compassion.  This week it's His faithfulness.   This has been a Great Rock for me to stand on.   Also one day I read a devotional and it spoke to me so much about God's ever-present care that I wrote it down, taped it up, took a pic for my phone so I could see it all over the place.  Now you can see it too.

October 7, 2012

Accept today

Before now I hadn't spent lots of time in the company of those who were feeble or real advanced in age.  Erik is only one year older than me but that's how I'd categorize him today.  Before his 3 seizures he wasn't bounding with energy; but he did swim in our pool only last July.  And we'd often throw the football back and forth in his room.  We teased each other and laugh a lot and sing.  That now seem so unattainable.  I'm missing those times. 

Erik today is very centered on sitting in his chair, holding his Cowboy hat (or football) in his hand, napping, taking his meds, trying to eat and sort of stroking his left leg which, I believe, bothers him often.  He's not in rehab anymore, but moved to the 24 hr nursing care wing.  When I'm there, I'm not sure he's able to connect me with any memories.  But I want to see him anyway, hold his hand, help him in any way I can.  It's hard to know what to do to brighten his day.  I've been playing some of his favorite songs on my phone but now even that doesn't seem to register with him.   I'm learning to accept whatever today gives and that's ok, but not always easy.

This stage of his life is not headed towards recovery.  But Erik continues to amaze me.  The Lord uses him to teach me about compassion and simplicity.  Those who work with him in Long Term Nursing Care every day humble me and fill me with gratitude.  Erik has been loved everywhere he's lived and that's still the case now.  I think certain nurses and helpers get special smiles from him.

Erik really likes this football
I caught him napping this past week with his soft Cowboy blanket.  He was sleeping so well.
If you think of it, please pray for Erik's leg, that the blood clot would be resolved, he'd not be in pain and for him to eat better.   Thank you.

To end on a happier note, let me share pictures of this dude, living life to the full.

Erik dressed as Elvis for a talent show.  I think he sang Blue Suede Shoes. He won first place!  How could he not?
another talent show, Erik giving it his all.
Colorado fishing and Erik hooked a good one.
 Love, Liz

October 1, 2012

What's going on in rehab?

Happy October, everyone.
Erik's days have been filled with therapists, nurses, visits from family, eating and sleeping.  Sometimes it seems like he does more sleeping than anything else.  One day his weight was needed for some new medicines so he was weighed on a sling scale.  (He's pretty wobbly to stand.)   The machine hoisted him up over his bed and slung him like a big fish.

He's been so tired.  Often I'll find him slumped over in his chair after a meal or during a meal, sound asleep.

One day last week his therapist was getting him ready to go for a walk.  In the hall outside his room, she strapped a belt around his waist to grab onto in case he fell.

She asked me to try and get him to stand up.

I didn't have any luck.  But his therapist did.

Time to rest after all that walking.  Erik's having no problem with this part of rehab.

Last Friday I was hanging out with Erik in the hall near the nurses station and a woman came over and said, "We need Erik for a glamour shot!"   

Here's how he looked. He smiled at her as she took the picture.  So cute.  It was good to see him starting to sit more upright.   Before he was slumping over a lot.  I think he's not in pain as much now, which helps everything.

After the photo shoot, it was time for a walk.  Erik did well.  
I was told today that this morning he walked around the building using a walker for the first time.  They said he strolled around with a huge grin on his face the whole time.  love that.
Quick update:  His picc line has been taken out after 2 weeks of receiving those strong antibiotics.  He is being treated for a blood clot in his leg.  He has developed an upper respiratory infection and is having breathing treatments for that.   Seizures appear to be under control.  He's still not eating well and will not feed himself an entire meal, maybe only a few bites.  His weight is being monitored closely.  Our sister came last week and helped out, which was so wonderful.  All in all, he seems to be stabilizing in some areas, which gives us relief.   This week he will be moved to a semi-private room so he'll get a roommate.   I so appreciate your prayers for Erik and for me, that he would adjust well to all the changes he's experiencing.  And that I would have wisdom in balancing my care for him and in all decisions.

All for now, love from Erik and me.   

September 17, 2012

Good Things

Well, what can I write today about our Erik?  There is much for me to be thankful for.

-- Erik has been moved to a private room.  The staff in the new hallway has taken to Erik well, I think they liked him right away.

-- he's still receiving the strong antibiotics via his PICC line twice a day and the meds seem to be getting the job done.  Only has TWO more doses to go.  
here's Erik last week, receiving his meds, in his new VIP private room. :)
-- Over the past weekend, Erik's PICC line entry site somehow became agitated and it got all bloody.   He got new bandages and dressings and endured it like a champ.

--  Erik was shaved today and I didn't have to do it.  Someone did it while I was home for lunch and he looks great.  Whew.

--  We haven't noticed any new seizures. 

--  Before church yesterday I was blessed enormously by a woman who's a patient in the rehab.  I first saw her last week when Erik was residing in the other hallway.  She was sitting in a wheelchair, just being still.  Her face was bruised everywhere and there was a large swollen goose-egg on her forehead where she had fallen, truly heart-wrenching.   Yesterday as I was wheeling Erik around the building I heard a woman quoting Bible verses out loud, purely for her own benefit -  promises from God.  It was her, the same lady, her bruises still there but much less visible.  I was amazed, kept walking but then doubled back and went over to her, leaned down asked her to tell me her verses.  She proceeded to quote verse after verse: of God's faithfulness to answer when we ask Him, of believing and of His goodness.  I'll never forget that. 

-- Another wonderful thing happened this morning.  I got there later than I wished due to some workers in our home. On arriving I noticed Erik wasn't in his room, so I looked in the therapy gym and he was there.  He was at a bike machine, but his therapist immediately, excitedly pointed to another therapist nearby and declared that I HAD to go see her video of Erik.  I was eager because clearly something good had happened.  I went over and she showed me a short video of Erik WALKING around the halls!!!  Not just a few steps but a long walk. He was going going going! Wow! They video'd it for me since I missed it.  Oh~yes!  With his helpers at each side, Erik walked around 2 and half hallways, got tired, sat down and made those therapist's day.  And ours.  Erik hasn't really walked upright since before Labor Day.   Let's hope for more mornings like this for him.
here he is (sorry, I know it's blurry):

-- Erik's future has been so uncertain to us in these past few weeks, much mental anguish going on in our minds.  But after his therapy this morning we were in his room while he was getting his IV meds and the nurse from his assisted living facility walked in.  Wonderful to see her!  She told me how much everyone missed him and that they all want him back.   She helped me to not be so worried about where he'll be when he leaves the rehab, shared with me with options that are available right in current assisted living facility and I felt better.   She also told me about a woman who lives there who lives down the hall from Erik. A woman I really don't know at all, she doesn't leave her room much.  But she has really taken a liking to Erik, it seems.  She would DOTE on him, I was told today.  She'd help him at mealtimes, making sure he had all he needed.  Ah, so sweet, and I never knew.  Well, since Erik's not been there for over 2 weeks this woman is missing him so much she's sitting IN his chair at meals with 3 old men -- who are not the cleanest of eaters.  Well, we need to get Erik back there so his adopted mom can give him ALL her love.

still to work on:  Erik's not having the best appetite.  We think he's losing some weight.  Some meals he's interested in food and others he just wants to sleep through, even when bribed with chocolate ice cream.  

All for now.  Thank you again for your care for Erik. We know many of you are praying and we value that so greatly.

September 12, 2012


I last left you when Erik was getting adjusted to life in the Rehab nursing facility.  He's been there 5 days and it's a busy, focused place.   Some impressions:

Wheelchairs.  I wish they could recline like Lazy Boy chairs.  Erik would like to nap.

Therapists.   They are sweet people.  Sweet Sweet Sweet.  They want you to improve and patiently nurture you to try.  They are becoming dear friends.

Nurses.  They have been our comforters and friends too.

Doctors.  They appear and help and get things done.

Favorite hats:  Erik was a little out of sorts until I brought his Dallas Cowboy hat to him.  He holds it and looks at it most of the day and it makes him happier.

Rehab Residents:  Those who need healing are all around us.   Whether their wounds are visible or not. 

Location:  Having Erik 5 minutes away from our house is a God-send.

My Heavenly Father:  The One on Whom I lean all day long.  We need Him.

When Erik first entered the rehab I wasn't sure I liked it at all.  It was so busy but no one was helping us learn the ropes.  I know now that there were many people being checked in that day and only so many people to go around.   After a few days there I've seen how Erik is being cared for my opinion has changed.  A speech therapist helps him eat his meals.  An occupational therapist does too.  A physical therapist helps his muscles work.   Even when Erik's in pain, they find a way to help him progress.  And he was in pain yesterday.   A skin infection developed an abscess on it.  That's not good.  I was in Erik's room when a new doctor came in, looked at it and made things happen.  Erik needed stronger antibiotics and quick.   A PICC IV was put in his arm, threaded close to his heart and medicine administered.  He'll continue to get it for 7 days.  This morning when I saw him I already noticed improvement.  Praise the Lord.   

He is reluctant to feed himself.  He gets tired. Or can't remember how. It's sad.  But that's a goal to work on.  He's having a hard time holding his head up.  Heads are heavy, especially when you're tired.   Many people there spend their days in wheelchairs, like Erik.  I understand now why they look so tired.  They are working hard just to be sitting and their body healing.  When I see other elderly people using walkers to get around, I find myself thinking, "Wow, that person's so strong!!".

Erik is becoming a sweetheart to the staff.  Sometimes when they walk by you can hear him say "Hi!"  He smiled at me more today than in the past 5 days. That was a treasure to me.  


September 9, 2012

A Labor Day I won't forget

I have meant to write for a long time but there has been no time.  One week ago, (as I was told) Erik was sitting in his dining room around lunch time and it seemed he started feeling strange.  He rose up from the chair as if he was going to stand and then fell, full force, face-down and started to have a 30 second grand mal seizure.   A little background:  This was his 3rd seizure in 5 weeks.  It followed one 8 days previous where he, again, fell on his face and possibly fractured his nose.  All three seizures have necessitated trips to the Emergency Room.  Cat Scans were done each time with no problems found to his neck or skull.  Since these seizures began I'd started noticing that Erik wasn't mentally as present.  Eating became confusing for him.  Walking began to be a chore.  It has been hard to know if Erik's in pain except by visual clues.  If you ask him "Erik, do you hurt anywhere?" he always answers "no" or won't answer at all.  As you can imagine, our desire to get to a neurologist was high.  I had 2 different appointments for him lined up - with 2 different neurologists, trying to find one who could see him the soonest.   Then came the strong seizure the day before Labor Day.  The next morning all he would do was sleep deeply.  We could hardly rouse him.   Something just wasn't right, he had no interest in food.   So we drove him to the ER to see if there was any chance a neurologist could see him.  Thankfully they admitted him and he was seen the next day.

Here is a picture of him that first day in his hospital room.   His head was very scraped by his fall and he had tubes and noises all around his hospital bed.  He put up with it all amazingly.  Better than I would have, for sure.  He was in a special bed that was filled with air constantly -- so the noise was like sitting next to an engine in an airplane.

The following day he was given an EEG in his room.  The technician had to attach a ton of sensors on his head, face and chest.  Erik was supposed to lie still and not move his head.  If only he'd been sleepy during this test!   He moved his head quite a bit but they still got the readings.  Results came back normal.  The neurologist had already decided that Erik needed anti-seizure meds, just as we hoped.  The initial dosage made him extremely drowsy so the dose was lowered and we're now watching to see how he does on it.   
So then it seemed like weeks passed, but really it was just 5 days/nights in the hospital, waiting and watching.  We were blessed with exceptional nurses and staff.  Family took turns staying with him all day and night, except for the last night...we knew by then that he'd be cared for very well and he was.  Finally it was time to be transferred to a rehab nursing facility that happened to be near my home.  Erik got to ride on a stretcher in an ambulance. 

sitting up after laying in bed for 5 days feels good.
We're so eager for therapy to begin so Erik can hopefully regain his strength.   He seemed to lose so much of himself after each seizure.  Erik fed himself a little bit while in the hospital but mostly we had to feed him.  Also, he seemed so weak.
First day at the Rehab center,  getting settled in.
That night dinner was brought to his room and he made me so happy by taking the ham and cheese sandwich and actually lifting it to his mouth and biting it.  Hadn't seen him do that in so long.  Erik entered the rehab on a Friday afternoon and sadly, the therapy won't begin until Monday so we spent the weekend of checking on him, trying to make him comfortable.  I feel like I'm not succeeding at that very well.   He's usually sitting in a wheelchair when he's not napping in his bed.  Tonight my daughter and I tried to shave him.  We will never be able to earn a living shaving men's faces.  We ran out of shaving cream so he ended up with patches of skin and patches of whiskers everywhere--oh my goodness.   
save me from my sister's shaving

I hope you can't tell what a terrible job I did, but I know Erik forgave me.
A male care-giver came to the rescue and took care of the mess we made.  He finished the job for us but I forgot to take a picture of his whisker-free face.  You'll have to take my word. 

Ahhhh, deep breath.  Rehab starts tomorrow.  Please pray Erik responds well and his body and mind heals, for good rest and that we know what to do to give him the best quality of life going forward.  So many friends and family have kept Erik in their prayers.   How can we thank you enough?  The Lord keeps reminding me of His love for Erik, of His constant protection and provision.  Erik is his child and He is his Good Shepherd.  Thank you for reading and caring for my sweet brother.

August 24, 2012

Erik's imprint

 I've mentioned before that Erik worked for 27 years at a hospital in our hometown.  When he started to show signs of confusion we knew his well-earned retirement was approaching.  So we made plans for that next phase of his life, which I've written also written about.   But I've never shared with you the newspaper article the Dallas Morning News ran on the occasion of Erik's amazing retirement party back in 2007.  I've gotta remedy that right now.

 A reporter wrote the following about Erik:

Saying goodbye and good job
-- After 27 years on the job, hospital worker is showered with gifts and respect.
  While his father saved lives, Erik Barret touched lives.  They worked at the same hospital, the father as a pediatrician and the son as a utility technician.
  Mr. Barret spent 27 years at Baylor Medical Center at Irving.  He rarely missed a day.  He loved his job,  And he always wore a smile.
  Now, he's moving on.
  "When I retired about three years ago, Erik told me he thought that maybe he should retire, too," said Dr. Walter Barret, who was on staff at Baylor Irving and Children's Medical Center in Dallas for 43 years.  "It's just the time for him to leave."
  His eldest son is only 46 - an age that's young for retirement, but a milestone for someone with Down syndrome, a genetic disorder that causes varying degrees of mental retardation and physical problems. 
  "When he was diagnosed, the doctors asked if we wanted to put him away,"  Dr. Barret said.  "Not much was done back then for children with Down syndrome."
  But he stayed with his parents and quietly shattered stereotypes.
  Mr. Barret learned vocational skills at Helping Hands in Irving, which is now Our Children's Center.  He ran track and became a good bowler.  He graduated from Notre Dame School in Dallas.
  And for more than a quarter of a century, he's been a dedicated employee.  His tenure at the hospital surpasses most staffers in his department.
  When his supervisor wanted to give him a break during his last week on the job, Mr. Barret was offended.
  "He didn't want anyone helping him," said Al Gibbs, director of Environmental Services. 
  In his blue uniform shirt, Mr. Barret beams with pride.
  "Erik is such a success story," said his father.  "Where many people just meet their potential, he has exceeded his."
  Mr. Barret's co-workers wholeheartedly agree.
  Doctors, nurses, administrators and staffers stopped by his retirement party last week to say goodbye.
  Hospital chef Ed Perrotta prepared a wide array of dishes for more than 200 guests.  Bags of M&M's and Skittles served as centerpieces.
  Mr. Gibbs presented gifts to his wide-eyed employee.  A big Dallas Cowboy fan, Mr. Barret received a basket of team goodies and a stereo unit and headphones.
  Even the city pitched in to honor Mr. Barret.  Mayor Herbert Gears sent a proclamation stating that Jan 31, 2007, was Erik Barret day in Irving.
  The guest of honor didn't blush as his friends applauded loudly.  He just grinned.
  Many guests were teary-eyed as they hugged Mr. Barret goodbye.  They wished him well and said he will be missed.
  "Some people leave an imprint that will never be replaced,"  Baylor Irving chief Jim Thaxton said.  "Erik is one of those people."
  "I love him a lot," said Sharon Martinez,  Mr. Barret's favorite nurse.  "He loves to sneak up on me and tease me.  Once he leaves, it will be hard.  He always smiled and waved at me."
  "I'm so proud of Erik," Mr. Gibbs said.  "He has such a strong commitment to the hospital. and he's very versatile."
  "I sometimes mop and clean the stairs," Mr. Barret said.
  The oldest of four, Mr. Barret was born in Memphis, Tenn., but came to Texas with his father's job. When he started at the hospital, he lived in a group home in Dallas.  For the past two years he's lived behind the hospital.
  "He loves being independent," Dr. Barret said. "He can manage everything but money."
 Now it's time for a change.  Mr. Barret will move to a group home on 160 acres in Brownwood, where he will still be able to work.
  While sad to leave his Baylor family, Mr. Barret says he is excited about his future.
 "I'm going to the country," he said.  "I'm going to have new friends."

I know I'm a proud sister, but wasn't that wonderful?  God's blessings abound.

Today when I was in Erik's room he pointed to this article (hanging on his wall) and looked at me, wanting me to comment on it.  I said, "Yes, Erik, that's YOU in the newspaper article.  You worked at the hospital."   He points to this article almost every single time I visit him.  I'll bet he shows it to everyone else who comes in too. 
Thanks for reading and have a wonderful week.

Erik doing a great job at the hospital.