Thankful

Meghan, Tim's Care Coordinator, called me and left a message on our voice mail today.  I had spoke with her this morning regarding Tim's possible move to Rush.  The move is on hold!!!!  She said PT is going to reevaluate him on Tuesday.  If he's doing well walking, he will be staying at his home in Newark for now.  Praying that he walks well. :)

Confused

So on Tuesday while I was at work, Renee from DDSO called.  She left a message on my voice mail about moving Tim to a house in Rush... because he isn't walking well (she says), and it's a dire emergency to move him at this time.  There are a few problems I have with this.  The house is NOT a home.  It looks uncared for and uninviting from the outside, just a dull place in the middle of nowhere.

The inside leave much to be desired as well.  It's large, echoey, and cold, and I don't mean just the temperature, but the whole look.  To top it off, I was told by someone that the residents there are low functioning.  My brother is not.  Of course, my sisters and I are against the move, but it's being forced.  I was on speaker phone Wednesday morning with Renee, Kim, and Wes King, all trying to persuade me of how badly Tim needs this "for his own safety".  BUT every time we see him he's walking great, and I told them this.  It was to no avail though, as I was once again told that he trips over the thresh hold, can not do the stairs easily, and shuffles his feet, causing someone to need to walk with him at all times.  I ended up in tears, and decided to pop in on Tim for a visit later that afternoon.  When I got there, he was having a fit as Erin was putting a Depends on him so that he could go for a ride with me...I have them do this because he has wet my car seat on a few occasions.  She hadn't told him I was coming because I had failed to say exactly when I was going to be there, and she didn't want to overly excite him.  When he saw me, he instantly settled, grabbed my hand, and we were off!  He had no trouble walking, in fact he practically ran down the front steps, his hand in mine.  Once again I was failing to see his difficulty walking, and the emergency to move him out of the home he has known for 20 years, aside from a 3 year stint in a house across the street when he was put on a med that suddenly took away his ability to walk on his own.  "Is he on a new medication?", I had asked at the time.  "Nope, nothing new", I was told.  Very shortly after he was moved his ability to walk suddenly came back.  When I inquired as to why he had lost his ability to walk and then regained it as if nothing had ever happened, I was told, "We took him off of the new medication".  But I thought he wasn't on a new med?  We had been lied to.  They moved him back into his home 3 years later when an opening became available, but a few short months later he "tripped over the leg of a chair" and walked with a limp after hurting his lag when he fell.  Since that time they have said his walking has gotten worse and worse....although we don't see a problem at all.  I have been told he has "Athritis in his spine" and "He has a drug induced Parkinson like disorder that's only going to get worse". "He's not on any new meds", we are told once again.  I did talk to Tim about the whole situation as we drove down the country roads through Yates County.  I told him that we don't think the Rush house is a good move for him, and he told me he doesn't want to move.  Upon our return back to his home, he took off for the bathroom (unassisted) to remove his Depend, and came back to the kitchen (unassisted) to usher me toward the door.  He did not shuffle his feet or seem unsteady.  I'm thinking they want to move him to make room for someone else.  We are praying that God allows him to stay where he is until something opens up with Heritage homes.  I wish they would return my calls.

This is us a couple of weeks ago on our visit.  I love him,

Pondering...

After hearing he had a bad day the day before, yesterday I went to see my brother.  He had a purple, swollen ear from hitting himself, bruised cartilage, they said.  He excitedly took my hand and we walked out to the car together.  I hadn't even had a chance to sign him out yet.  As we walked out to the car I asked him what was bothering him, but got no response.  I'm used to it. That's normal for him, he's autistic. We got in the car, and he ate the treats I brought for him...a banana, some peanut butter pretzel bites, and Oreo thins.  As I drove along the country roads, we listened to a CD of my dad playing his guitar and harmonica.  Tim cried off and on, which means I did too.  At the end of our ride we stopped at Wendy's to get a small chocolate Frosty.  As usual, he ate it at warp speed.  After he's finished I usually take him home, but I had brought my tablet to see if I could get him to "talk" to me on it. (I haven't done that in a long time because he doesn't usually do anything with it) I asked him what was wrong as I handed him the tablet.  He looked at the screen and swirled his finger around on it, without actually pushing the separate letters, and handed it back to me.  Fully expecting there to be nothing legible on the screen, I read, "home".  I told him what it said and asked him if it was a mistake or if he meant to say that, after all, I had no idea you could write something that way, but I tried it afterwards and found out I learned something new!  He looked me in the eye and said, "Home".  He wanted me to take him home... or so I thought.  Maybe he did, but my sister said that maybe home is what's bothering him.  I was so sure he didn't want to tell me and just wanted me to take him home (and maybe that is the case), but now I need to go back and find out what he meant.  They want to move him to a new home because he's not walking great these days, so maybe he's tired of hearing about it, or dreading it (he was abused at the last one) or something.  In any case, he talked to me, and that is something I always treasure.

Reminded how much God loves me this morning... Nathan and Bethany singing

1	The love of God is greater far   Than tongue or pen can ever tell. It goes beyond the highest star   And reaches to the lowest hell. The guilty pair, bowed down with care,   God gave His Son to win; His erring child He reconciled   And pardoned from his sin.
	O love of God, how rich and pure!   How measureless and strong! It shall forevermore endure—     The saints’ and angels’ song.
2	When hoary time shall pass away,   And earthly thrones and kingdoms fall; When men who here refuse to pray,   On rocks and hills and mountains call; God’s love, so sure, shall still endure,   All measureless and strong; Redeeming grace to Adam’s race—   The saints’ and angels’ song.
3	Could we with ink the ocean fill,   And were the skies of parchment made; Were every stalk on earth a quill,   And every man a scribe by trade; To write the love of God above   Would drain the ocean dry; Nor could the scroll contain the whole,   Though stretched from sky to sky.

God Knows You and Calls You by Name

By Rick Warren

“When Jesus came by, he looked up at Zacchaeus and called him by name! ‘Zacchaeus!’ he said” (Luke 19:5 TLB).

All of Zacchaeus’ life, he’d been ridiculed and rejected, first for his appearance and then for his sinful life. But Jesus did more than just look at him. By calling Zacchaeus by name, Jesus showed that he knew him. Imagine the shock Zacchaeus must have felt! How did Jesus know his name?

God not only knows where you are, he also knows who you are. He knows what you’re going through, why you’re going through it, and how you feel about it. He knows you better than you know yourself. He cares about you personally.

The name Zacchaeus means “pure one.” That’s the last thing that comes to mind when you think of a corrupt government official. He was anything but pure. And yet Jesus, calling Zacchaeus by name, was saying, “Hey, pure one, I’m coming to your house today.” Jesus was affirming what he saw in Zacchaeus, not what Zacchaeus was.

You may be afraid to get close to Jesus because you think he’s going to scold you for all the things you’ve done wrong. But Jesus wants to affirm you. He wants to let you know how much he loves you.

“Can a mother forget her nursing child? Can she feel no love for the child she has borne? But even if that were possible, I would not forget you! See, I have written your name on the palms of my hands” (Isaiah 49:15-16 NLT).

When Jesus died on the cross and stretched out his arms and the soldiers put nails through his hands, your name was engraved there. When you get to Heaven, there will be no scars on anyone except Jesus. He’s going to have those scars for eternity to remind us how much he loves us, a way to say, “Do you think I could forget you? Not a chance! This is how much you matter to me.”

Being Christ

"We exist to be little Christ's, Not Little Ladder Climbers, Not Little Control Freaks, Not Little Convenience Dwellers.  Simply little giving Christ's.  Not ever in a way that's divine, but simply, always, and in every way, disciples.
The term "Christian" means exactly that- little Christ."  -Ann Voscamp


Lord, I am failing.  Please help me to be You to those I come in contact with every day.  Help me to love like You, be patient like You, give like You, be gentle like You, be kind like You, be joyfull in all things, and... to LOVE like You.  I know I already said that, but... thank you.  -Rachel

May my hands be Christ's

"There's more than a thousand ways for Christ to have hands in a busted world so the brokenhearted can find a deeper kind of whole." - Ann Voscamp

Lord, may my hands be yours.  Give me your heart and help me to see others the way you do.  Lead me and guide me where you want me to go.

Another visit with Tim

Yesterday I picked up Martha and we drove out to Newark for another visit with Tim.  He, like always, was happy to see us and eager to go out for a ride.  He seemed more there today, and when we got in the car I wanted to listen to Dad play his guitar and harmonica on CD for us.  It's like having a little piece of him on our visit, so I said, "Let's find Dad!"  As soon as I said that he looked right at me... probably thought I was a bit crazy.  Along the ride he looked at me and smiled just like he used to.  I love his smile and told him so.  Martha and I chatted on the ride, asking Tim a few questions along the way, but he didn't respond.  I noticed he had a small gash with a fading bruise above his left eye and couldn't help but wonder if he's being treated well... after all, he was being abused by a caretaker (who has been fired) not too long ago, and there is an investigation that is still incomplete.  When we dropped him off at his home he gave me a nice, sweet, tight (but not too tight) hug.  He hasn't given me one like that since our dad died.  Martha had gone to sign him back in, and I felt bad that she missed out.  He's usually in a hurry to get to the bathroom and isn't always so generous with his hugs, but you never know when he'll have a special surprise hug for you... you just never know.

Michael's haircut

He wouldn't pose for a photo, but Michael got his hair cut today.  He went to the barber for the 1st time since he was about 8 (he usually either buzzes it with the clippers or Flowbees it.  That's the haircutting machine that hooks up to a vacuum cleaner.) He had grown his hair so long, and he has so much of it that it was just too much.  He said he wanted to do something a little different with it.  He told the barber to leave it longer on the top.  He reminds me so much of my dad with this haircut.  Now when he pushes his food around on his plate while he's talking over dinner tonight, he will remind me even more of my dad than ever. :)

Taking a Break

I am taking a much needed break from facebook (even though I really don't want to) to get my priorities straight.  I found it to be taking up way too much of my time.  I'm really not sure when I'll go back to it.  I've ordered a great book, The Broken Way, by Ann Voscamp, and am looking forward to it coming in the mail soon.  I even vacuumed, did 2 loads of laundry, washed, dried and put away dishes, and cleaned out the fridge before I left for work this morning.  It's amazing what I can get done when I'm not scanning through facebook all the time. :)

Visits with Tim

On Christmas Eve Martha and I took a drive out to Newark to visit Tim.  Martha baked him an apple pie for Christmas and brought it for him to share with some at his home.  He was thrilled.  We had a nice ride and he seemed more alert today... less drugs, I'm sure of it.  When we got back to his place after our ride, he even posed for a picture with Martha and I, and with a smile on his face!

Yesterday I went to see him alone because Jim and Michele were visiting from Minnesota.  I told Tim that, and that Martha loved him and would come the next time.  He seemed a little zombie like when I picked him up, although he was happy to see me, as usual.   His shoe laces were all untied and I was afraid he might trip on them so I tied them for him.  He quickly ate his goodies, as usual, some baby carrots, wheat thins, and a few small store bought cookies.  I got my face in his in the car (at a stoplight) for some forced eye contact, and he looked at me with warm eyes and smiled.

Out For a Drive

10/28/16: So today I had a meeting reguarding my brother Tim.  About 10 people, caretakers, social worker, psychologist, nurse...  I wanted to address the fact that for the past year or so Tim has pretty much been a zombie and doesn't react to us.  In fact, the last time we had seen him he actually turned away several times when Martha and I tried to look at him.  Pretty much what I heard these people tell me in relation to my concern was that Tim is happy, he smiles, he has eye contact with them...  I was told that I don't see this probably because he is due for his next med ("happy pill") at 4:00, and we come at 2:30, meaning it's pretty much worn off.  Gimme a break!  They said that maybe Martha and I should come earlier, picking him up from Program.  I told them that he used to respond to us, and I passed around pictures of him happy and responsive, and a picture of him in a zombie like state.  Not sure I got anywhere with the meeting, but at least they know how I feel.  I ended up losing it and crying.  Hate it when I do that.

11/4/2016: Today I went to visit Tim alone because Martha had some other obligations.  He seemed maybe slightly less zombie like, although he was grinding his teeth when I picked him up and did it off and on through our whole visit, only stopping when I put my hand gently under his jaw and asked him to please stop.  I told him that he would be very sad when his teeth were all ground away and he could no longer eat apples and things that he likes, and that would make me sad too.  He ate the cut up apple and the peanuts and 5th Ave bar I brought him, but never looked my way and never smiled like he used to do up until last year.  I stroked the back of his hair and told him about why Martha wasn't there, and that she loved him and would probably be there next time.  I also told him that I would be going on a cruise and wouldn't see him for 3 weeks because of it.  I told him Hannah had a baby boy, asked him if he remembered Mom singing a certain couple of songs she used to sing him all the time (which I then sang), and we listened to Dad play his guitar and harmonica.  We got the standard chocolate frosty, which Tim downed in less than a minute, while I tried to keep his shirt clean by wiping all his messy drips.  I called Robyn (one of his caretakers) when I got home because she had mentioned something about Tim maybe being unhappy when he went out with us because maybe "his knees hurt" getting in and out of the car.  I told her that he doesn't act unhappy, but rather it's his complete lack of emotion that concerns us.  I told her if I waved my hand frantically in front of his face, I don't even think he'd blink.  It's almost like he's had a lobotomy.  I told her it's really heartbreaking to see him in this state.  She said she understood.  We'll see if things change at all.  I love him.  Sad he got a life like he did... but I know even he has blessings to count.

I Wanna Live it Well...

Live It Well

Switchfoot

Yeah
(I wanna live it well)
Yeah, yeah
(I wanna live it well)
Yeah

Take the burden from my arms
Take the anchors off my lungs
Take me broken and make me one
Break the silence and make it a song

Life is short; I wanna live it well
One life, one story to tell
Life is short; I wanna live it well
And you're the one I'm living for
Awaken all my soul
Every breath that you take is a miracle
Life is short; I wanna live it well, yeah

I wanna sing with all my heart a lifelong song
Even if some notes come out right and some come out wrong
'Cause I can't take none of that through the door
Yeah, I'm living for more than just a funeral
I wanna burn brighter than the dawn

Life is short; I wanna live it well
One life, one story to tell
Life is short; I wanna live it well
And…

The One

The day is dark and I can't see
The path I'm on or what's in front of me
But I will stand on this I know
You will never let me go

For the one who holds tomorrow
Holds me in His hand
And I will not fear the future
I'll trust the Great I Am

His love is deep, His love is wide
A fountain flowing like a crimson tide
My stains were scarlet, but this I know
They've been washed as white as snow

For the one who holds tomorrow
Holds me in His hand
And I will not fear the future
I'll trust the Great I Am
Who has been and always will be
Reigning on His throne
For the One who holds me in His hand
Is the One who holds it all

Though the world shall fade away
And the sky may even fall
You are strong enough to save
You're the one who holds
Every heart that is afraid
You hear our desperate call
You are strong enough to save
You're the One who holds it all
You hold it all
You hold it all

For the one who holds tomorrow
Holds me in His hand
And I will not fear the future
I'll trust the Great I Am
Who has been and always will be
Reigning on His throne
For the One who holds me in His hand
Is the One who holds it all
You're the One who holds it all
You're the One who holds it all

Streams in the Desert

I was crushed...so much so that I despaired even of life, but that was to make me rely not on myself, but on the God who raises the dead" (2 Cor. 1:8, 9).

"Pressed out of measure and pressed to all length;
Pressed so intensely it seems, beyond strength;
Pressed in the body and pressed in the soul,
Pressed in the mind till the dark surges roll.
Pressure by foes, and a pressure from friends.
Pressure on pressure, till life nearly ends.

"Pressed into knowing no helper but God;
Pressed into loving the staff and the rod.
Pressed into liberty where nothing clings;
Pressed into faith for impossible things.
Pressed into living a life in the Lord,
Pressed into living a Christ-life outpoured."

Petra, It is Finished

"They searched His face for anger;
For vengeance in His stare;
Instead of eyes that burned with hate
a look of love was there."
(Petra -- It is Finished)

Oh, Lord, make me more like you every day.

Prayer: by Max Lucado

How hard can it be? I have friends who excel in prayer. They inhale heaven and exhale God. They would rather pray than sleep. I sleep when I should pray. They belong to the PGA: Prayer Giants Association.

Not me. I’m a card-carrying member of the PWA: Prayer Wimps Anonymous.

Hello, my name is Max. I’m a recovering prayer wimp.

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SPECIAL COVERAGE: The power of prayer: For America's future

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It’s true. I doze off when I pray. My thoughts zig, then zag, then zig again. If attention deficit disorder applies to prayer, I am afflicted. When I pray, I think of a thousand things I need to do, and I forget the one thing I set out to do: pray.

Sure. We all pray some

But wouldn’t we like to pray More? Better?

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SPECIAL COVERAGE: The power of prayer: Enhance your life

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Prayer is not a privilege for the pious, not the art of a chosen few. Prayer is simply a heartfelt conversation between God and his child. My friend, he wants to talk with you. Even now, as you read these words, he taps at the door. Open it. Welcome him in. Let the conversation begin.

Prayer really is that simple. Resist the urge to complicate it. Don’t take pride in well-crafted prayers. Don’t apologize for incoherent prayers. No games. No cover-ups. Just be honest honest to God. Tell him everything that’s on your heart. Your worries, your fears, your unfixable fixes.

But here’s the thing about prayer. If it depends on how I pray, I’m sunk. But if the power of prayer depends on the One who hears the prayer, then I have hope.

And if the power of prayer comes from the One who hears it, then I don’t have to be timid.

You heard me right. Our prayers shouldn’t be bashful or half-hearted. They should be bold.

Boldness in prayer is an uncomfortable thought for many. We think of speaking softly to God, humbling ourselves before God, or having a chat with God but agonizing before God? Storming heaven with prayers? Wrestling with God? Isn’t such prayer irreverent? Presumptuous?

It would be had God not invited us to pray as such. “So let us come boldly to the very throne of God and stay there to receive his mercy and to find grace to help us in our times of need” (Hebrews 4:16 tlb).

So how do we go from prayer wimps to audacious prayers like that?

We start by consulting God in everything. Always. Immediately. Quickly. Live with one ear toward heaven. Keep the line open to God.

I saw a piece of his heart...

 He laughed when he saw this picture of himself.

              He was still laughing from the previous picture when I showed him this one.

 I showed him this picture and asked him if he remembered having dinners at Grandma and Grandpa's ever.  He looked at it and said, "I remember that."  I thought it was nice that he answered because he doesn't usually respond back to me, although one of the workers, Robin, told me when I picked him up, that he had been talking more.

Then I showed him this one.  There was a stack of pictures, and we were looking at several.  At one point I looked over at him to see him silently crying, but quite hard.  Big tears streaming down his cheeks.  I apologized for upsetting him and told him sometimes it can be hard looking at pictures with so many people who are no longer with us anymore, and told him that we will see them again some day, but I'm really not sure why he was crying.  I saw raw emotion and felt like I saw a piece of his heart, but I can only guess why he was crying.  He pulled himself together and I rubbed his hand and told him how much I love him, but by then I was teary too.  I checked on him when I got home and the girl who answered the phone said he seemed happy and had just downed a cup of coffee.

Yesterday I went to visit Tim alone because Martha had to babysit Josh and Jake, and Priscilla had a job interview.  When I arrived he was sitting at the dining room table and had just finished coloring a large picture, with markers.  One of the workers (I forget her name) saw me and said, "I want to know who taught Tim to color so nice, and who taught him to say his prayers?"  She said he prays every night.  I told her that our parents always prayed with all of us and I'm sure that's where he got it.  It made my heart do a little dance.  My autistic brother prays!  I wished my parents could have heard that!  What a blessing it is to know that my brother knows the importance of prayer and does it daily!  We went out for our drive and I explained to him why I was there alone and told him that the next time it would be more than just me visiting.  We listened to a CD of  Dad playing his guitar and harmonica, he ate the goodies I brought him and I talked to him about how strange it was to see Mom's hands on the ends of my arms (my hands look just like hers to me).  He gave me some sweet looks along the way... I love him.  I took a blurry selfie of us upon our return to his house....

Sinuses and Painting

Well, I'm loving the warmer temperatures we've been having, but evidently my sinuses don't.  I am struggling to get rid of a sinus infection without having to take antibiotics.  I really hope I get to enjoy spring...
On another note, my husband doesn't want to go shopping with me today.  I'm thinking about painting the boy's bathroom and getting them a new shower curtain.  They have told me that their shower curtain is somewhat juvenile.  The colors on it are pastel and they've had it for many years, so I think it's probably past time to change it, and today is suposed to be rainy. Off I go. I'll report back later with some before and after pics.