January 16, 2012

This In-Between Time

Dear everyone,  Hello!  First of all I wanted to say that I was thrilled to see the recent comments on this blog from Jenn and Diane. They shared a bit of their story of having an adult sibling with Down syndrome (the very people I hoped to find through this blog!).  I rejoiced in meeting another person who "gets it", as Jenn said.  How I wish I could have long talks with both of you.

Secondly, it has been an intense few weeks.  I wrote in this post about needing to find another home for Erik and that has been my primary focus.  I'm happy to say we have a new home for him all lined up and even have a move-in date on the calendar.  In less than 2 weeks he'll be living a short drive away in an assisted living facility where he'll get hands-on care, activities, new friends and, of course, more time with moi

Now that the decision is made and the papers are signed the days are full of writing lists, purchasing what he'll need for his room, organizing the move, communicating with family members and the staff at Aldersgate, acquiring legal forms, and ... resting.

I feel a bit out of sync, wondering what's ahead, not really knowing what to write at present.  This makes me think of last February when I (very) tentatively began writing about my brother.  Recording the story of Erik has been so helpful for me --- it has allowed me to lift memories about Erik out of my heart 'n mind and send them to ... whoever's out there.   That anyone reads this amazes me and fills me with gratitude. 

Thank you for your prayers for Erik.  Please continue to pray for his adjustment as the move approaches, you lovely friends

January 5, 2012

What mental handicap?

Over Erik's life he's managed to surprise us countless times with things we just didn't expect.  It's fun to think back on these memories now when we're missing the old Erik.    Let me tell you a few unexpected things he has said.

"I think he's got it!"
Many years ago our dad took Erik to get a hearing test.   Erik was set up with large headphones attached to machines.  The technician said "Erik, repeat into the microphone after me."  He'd say a simple word like "window".  And Erik seriously repeated, "window".  This continued with other easy words while dad observed.  Then the technician stopped to adjust the machines and Erik, all of a sudden, got a gleam in his eye and slowly said into microphone, "The Rain in Spain Stays Mainly in the Plain!"   Well that got a round of laughter in the lab.

"Call me cultured"
On another occasion, many years later, Erik was visiting our mom in Colorado.  They were in Breckenridge walking around downtown, enjoying the shops.  They entered a shop with some classical music playing, and before mom and the saleslady knew it Erik nonchalantly said, "Oh! Beethoven."  Well, would you believe it, it WAS Beethoven's symphony playing.   Now, how did Erik know that?  I'd expect him to recognize Elvis, Johnny Cash or a few other artists, but Beethoven?

"Breckenridge needs me"
Well, later that same day after impressing the women with his cultural refinement Erik was feeling pretty good about Breckenridge.  So, as they were walking around, he declared to Mom, "I think I'll retire here!"  Mom laughed and agreed it was a pretty good place to do that.  So Erik found a realtor's office, went inside, and told the realtor he wanted to buy a retirement home.   She played along with Erik and that ended up being a great visit to Colorado for him and for Mom.

 "A man who knows what he wants"
On another trip to Colorado Mom and Erik were visiting a town near her house for breakfast.   They sat down, opened their menus and mom started to read the items to help Erik choose his breakfast.  Erik interrupted her with a decided,  "I'll have the Eggs New Orleans."   Okay, mom was, again, amazed.  We always knew Erik was not a strong reader but when it came to reading the TV Guide or a restaurant menu we needn't have worried about him at all.

There are so many more stories like this I could write. What a blessing to have a someone like him in our family.

Last November it was wonderful to see Erik explode with laughter after he bopped Mike's face with the paper football which he did many times, I might add.

January 1, 2012

Time to Alter Course

If our lives were a ship, this past week has been a lesson in the practice of changing direction or altering course.  We moved aside all other plans and began the journey into unknown territory.

Last Tuesday night our family came to the realization that Erik can no longer stay in his current group home; he has digressed beyond the type of care they are normally able to offer.   This news is difficult on many fronts, of course.  1)Erik loves where he lives and they love him so that's going to be hard.  2)Erik's sliding further and further into needing constant care, even for the simplest things, and we grieve that.  and 3) not knowing for sure what Erik's needs will be 3-6-9-12 months from now is frustrating.  I want to know exactly what he'll be facing because I like having a plan.

So step one of venturing into the unknown was to start visiting places close to us where Erik could live and be cared for well. We've seen several. This decision is, as I've heard so many say, difficult, emotional, overpowering and draining.  I'm usually fine whenever I'm making decisions for myself. But when you're responsible for someone else large decisions like this can feel so much heavier.  One thing I know, steering this ship cannot be done alone.  I'm so grateful to have the help of others throughout the search process.  His current group home is willing to work with him until we can find the perfect fit for him here in our area, which is a comfort.

All this leaves us with many questions, most with no answers yet.   But the destination right now is:  find a good place for Erik and move him sometime in the near future.   We are praying for the Lord's guidance and I know He will answer.  I would love your prayers for Erik.  

2012 will be an important year, I'm expecting, in our lives.   I confess, I'm feeling quite inadequate.  But I read recently that my emptiness and God's abundance are a perfect match. That the Prince of Peace longs to pour Himself into my neediness. Ok, Lord, start pouring, we need You!