Isn't it great that we are always learning and there is always more we can learn? Some of the things I've learned this week, in no particular order, are:
It was so great to have Elke here and to get her perspective and reaction to seeing Mike. She had not seen him since the accident, but kept up-to-date via CaringBridge and then this blog. The situation was harder and he was worse or maybe less coherent than she expected. Face-to-face is worth a thousand words.
ID - Intellectual Disability - definition according to aaidd.org: "...is a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18." (obviously, we don't qualify)
MH - Mental Health illness - generally refers to conditions such as depression, schizophrenia, bipolar disorder, etc. Brain Injury is not included under these serious medical illnesses. Seems that most of these can be managed with medication and therapy or some type of treatment. That is not always the case with BI and I would assume is not always the case with all of these disorders either, but..??
"The Medicaid home and community based waivers are programs offered to eligible individuals who require assistance with activities of daily living and/or supportive services and would prefer to live in their own home or the community rather than in a facility setting." Right now Mike is in a "community" type setting, but there are no waivers for BI in Virginia to help with that type of living arrangement. Even the waivers for MH & ID that are available have very long waiting lists, as in years and years.
Medical advancements are keeping people alive, but there are just not enough resources to provide help and/or residential services for all who need it. We can't expect the government to be able to handle this load completely, but we can have a voice and hope for some change and assistance.
There is a whole community of people struggling along the best they can in an attempt to take care of their loved ones. I went to a meeting today along with about 100 other people who want our voices heard about what the needs are in our difficult situations. Virginia is beginning the process to revamp the waiver system and so these meetings are being held throughout the state.
The following is a link to a very sobering, but informative article: residential-treatment-traumatic-brain-injury-victims Mike may have to go to a nursing home type facility, if we can find one to take him, and it may not be a long-term fix. (You'll understand after you read the above article.)
I really needed my counselor, Tanya, today. To be honest, when I first started seeing her a couple of months ago, I wasn't sure that I really needed counseling and she wasn't sure how to help me either. However, we decided that she would be a safe person for me to talk with and share anything and God knew that the time would come when I really needed her advice and Godly counsel. Today was that day and all the sessions before had given her the background she needed to help me. She made a good point, since I am trusting God to use us in this adventure for His glory, maybe there are unsaved people in various facilities that need to see God's love through Mike and I and our witness of Him. My fear of Mike being moved from pillar to post, can be used of God. Trust Him and be His witness.
God's Word is new every morning. I believe I've wrestled with God lately and was in turmoil. I praise God for a Billy Graham devotional that I get on my phone. Last night it was late when I read it, but it was what I needed - Imagine that! The title was "Standing Firm" - sound familiar? It reminded me that men like Daniel and Moses were tempted or tested by worldly ease, but they refused to forsake their godly heritage. "...history has been replete with the lives of men who have put God and His way of life above all else. Prayer - Help me to stand by faith in You when I am tempted, almighty God."
For the first time last night, I had actually thought it would be so much easier to follow the lawyers advice and divorce Mike, but of course, I would have more turmoil if I did that. So it was a fleeting thought that was quickly dismissed after reading Dr. Graham's devotional. Then this morning I re-read 2 Corinthians 6. Yesterday morning I could not focus on it. This morning it was gold. Here are some of my notes: Stay strong in salvation, don't be a stumbling block. Show that no matter what, Jesus is more important, God's way is the best even through the long list that Paul writes - hardships, beatings, imprisonment, hard work, sleepless nights, purity, understanding, patience, ........sorrowful, yet always rejoicing. Live life wide open. Not holding back. Don't bind yourself to an unbeliever - you will not be able to agree for "we are the temple of the living God. As God has said: 'I will live with them and walk among them and I will be their God, and they will be my people'." Be separate! Be different from the world! Jesus is crying out for us to do so!
Tuesday, October 8, 2013
Saturday, October 5, 2013
Caboose park photos
On a cheerier note. Here are some of the photos taken by my cousin Keleigh at Caboose Park where we celebrated Mike's birthday, back in August. If you are in the Blacksburg/Christiansburg, VA area, look her up, she has a great eye and fun props for official photo sessions - facebook/keleigh photography. Thanks Keleigh for fitting us in and working with these wild grains of Rice!
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| We are family! |
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| Mike enjoyed climbing on the caboose. |
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| Happy Birthday, Mike! |
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| He just can't help himself, if there's something to climb. |
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| Love this one! Best smiles ever! |
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| So great to have lots of family support and love. Maggie, Jenney, Sam, Mark |
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| Brothers - Mike & Mark |
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| G'ma and the newlyweds. |
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| Well....they can't all be serious. |
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| April baby! |
Letting Go of Control......Again
OK, grab a cup of coffee or a snack or come back later. This is a long one. I recorded this on my phone the night of the hearing for Guardianship, September 18, but have just gotten around to transcribing it. I may have told most of this before, but I don't think I have ever shared the whole story of that afternoon on April 25, 2012.
Control......such a simple looking word, easy to say, easy to spell, but oh so hard to handle correctly. I should have learned this already, but it comes around every so often...letting go of control. Obviously I'm a slow learner in this department. However, before I go into the new "control" lesson, let me back up.
Before Mike's accident, he really wanted to return to the mission field, but to me something just didn't seem right. Mike was not happy in his job and it seemed the motivation was wrong, even though he assured me that wasn't it. That he really felt called to be a missionary again or that he was never "uncalled". The only reason we returned to the states was because of me. I wanted to come back. I wanted our children to be able to know their extended family. So this time, I tried very hard not to be controlling. To let it go and trust God to lead. The first thing was to sell our house and it sold so quickly, that it seemed God was freeing us to go on the mission field. Even still, we moved into that tiny apartment in Fayetteville and Mike searched through many different mission agencies and nothing seemed to fit.
At that time, I reconnected with a former neighbor/friend who was going through a hard time. We shared our concerns and began praying together. She was fasting for the problem in her life, and so I was encouraged to fast for Mike's and my future. Something just didn't seem right with Mike, he would have these strange moments where he didn't recognize people he knew well, and moments when he would space out for a few seconds. I expressed my concern, but he said he was fine. While I was trying to be supportive in the search for mission work, things just weren't coming together for a mission spot where we both could be used and it felt like we were trying to make something happen before it was time.
The day of his accident, I was fasting and praying. I had just come home from the store and he was getting ready to go out and run. I asked him what he'd like me to fix him for supper and he asked why I wasn't eating. I told him and he looked bothered by that and said "You're not going to eat all day?" I said "No, I want to fast and pray about our future, but if it bothers you I will eat with you." He said "No, I'll get something when I'm ready." I said "OK. I'm going to put these groceries away and go for a walk," then he left for his usual afternoon run. That was the last conversation that I had with the Mike that I knew. In a matter of probably 15 minutes our life, as we knew it, came to an end. He walked out the door and did his stretches. (I couldn't see him, but he'd been doing this for all 28 years of our marriage so I knew it by heart) - stretch, run, sit-ups, push-ups. I put away the groceries, put on my walking shoes, and went out to walk.
I got to the back of the apartment complex when I received the call that Mike had been involved in an accident. When the realization hit that Mike was running, not driving, I started to run. For some reason I ran to the office thinking the manager told me the police were there, but the office was locked. Then I looked and saw flashing lights down the road and I knew it was bad. I took off running again. The maintenance man saw me and came and picked me up with the golf cart. I got to the scene of the accident and I saw the ambulance as I looked for the person in charge. The apartment manager pointed out the police officer and I went to him and said "I'm his wife." Immediately, the very distraught woman that he was talking with turned to me and said hysterically "I am so sorry! There was nothing I could do!" I have no idea what I said to her. The policeman asked basic questions and told me Mike was already in the ambulance and it was ready to go. I could follow as soon as I finished answering his questions. I am so thankful that God spared me from seeing Mike on the road all broken and bleeding. Honestly, in my mind all I see is the golf cart, the people on the side of the road, and an ambulance. I saw, I think, a small white pick-up truck, but I never looked at the front of it. I never noticed glass, blood, or anything on the road. I believe God protected me from having those images in my mind which would be hard to erase.
I got myself together and drove to the hospital. At that moment I never thought about calling anyone to go with me. I still did not know how bad it was and since Mike has had several minor accidents in the past, I was just thinking he'd be fine again. No one had told me anything about his condition yet and I had not seen the truck hood. A woman at the scene had told me he was moving, so she thought he would be alright. I called Pastor Tony on my way to the hospital and tried to reach another friend. The first person I saw at the hospital was one of the police officers. He arrived with a bag that had Mike's torn and bloody shoes in it. Then I was called to a small room where various people and doctors came in and spoke with me and I was basically clueless to what they were really trying to tell me. That my husband was in very critical condition. Nothing was really registering. They told me he was being prepped for surgery on his legs and I could come see him for a brief moment. I got back there and saw his clothes on the floor that had been cut off of him, they had tried to clean up the blood and they had him covered except his face. His face was perfect - not a scratch. He looked pale, but good; however, I didn't see what was under the sheet. I didn't ask to, and I'm sure they didn't want me to. It was all very quick and they whisked him away to surgery. He had lost a lot of blood they said. Did I want his clothes? No. In order to get him to surgery, as soon as possible, and before getting all of his personal information, he had been given the code name "Code Trauma Horseradish". Seemed like a bit of humor a midst all the crisis, and yet I forgot it when I later tried to get a status update. Thankfully, the nurse knew to ask if he had a code name and found him right away.
I had no control there. None whatsoever and yet, all of a sudden I had all of the control in making decisions for Mike. I was his Power of Attorney, his wife, and he was totally incapacitated. He would be drugged to be kept calm and to help with the shock and pain. Everything seemed to go so slow that night, the accident happened around 4:00 pm. He went into surgery as soon as they had him stable. His lower legs were badly broken and they were open wounds which had to be dealt with quickly. Our church family from West Fayetteville was wonderful. They came in droves. It was a Wednesday night so they were at church when they heard and many came. The first to arrive was our dear friend, Ryan. He left the church as soon as he heard. What a comfort to have him there and he stayed the entire time, even following me home after midnight to be sure I got into the apartment safely. The surgery took a long time since Mike's legs were so badly broken and the skin torn apart. They had to get the bleeding stopped, the bones somewhat set, and the skin closed. External fixators where installed - big old metal things with bolts into his legs to hold them still and the bones together. We were waiting to hear that he was in a room and I could go see him, when our friends, David & Judy, popped into the waiting room and told us they had seen him! No one had come to tell me, but they had just arrived, asked about him, and been taken to his room. He looked rough - tubes all over his pale face and body attached to various machines which were beeping and flashing. There was absolutely nothing I could do to fix him. This was no fender bender.
And now I have all kinds of control that I don't even want. Today (Sept. 18) I was put under a court order to be Mike's legal guardian and conservator. I don't want all of this control and yet it is thrown in my lap. I have been reading in Job, again God's perfect timing.
*****************************************
Control......such a simple looking word, easy to say, easy to spell, but oh so hard to handle correctly. I should have learned this already, but it comes around every so often...letting go of control. Obviously I'm a slow learner in this department. However, before I go into the new "control" lesson, let me back up.
Before Mike's accident, he really wanted to return to the mission field, but to me something just didn't seem right. Mike was not happy in his job and it seemed the motivation was wrong, even though he assured me that wasn't it. That he really felt called to be a missionary again or that he was never "uncalled". The only reason we returned to the states was because of me. I wanted to come back. I wanted our children to be able to know their extended family. So this time, I tried very hard not to be controlling. To let it go and trust God to lead. The first thing was to sell our house and it sold so quickly, that it seemed God was freeing us to go on the mission field. Even still, we moved into that tiny apartment in Fayetteville and Mike searched through many different mission agencies and nothing seemed to fit.
At that time, I reconnected with a former neighbor/friend who was going through a hard time. We shared our concerns and began praying together. She was fasting for the problem in her life, and so I was encouraged to fast for Mike's and my future. Something just didn't seem right with Mike, he would have these strange moments where he didn't recognize people he knew well, and moments when he would space out for a few seconds. I expressed my concern, but he said he was fine. While I was trying to be supportive in the search for mission work, things just weren't coming together for a mission spot where we both could be used and it felt like we were trying to make something happen before it was time.
The day of his accident, I was fasting and praying. I had just come home from the store and he was getting ready to go out and run. I asked him what he'd like me to fix him for supper and he asked why I wasn't eating. I told him and he looked bothered by that and said "You're not going to eat all day?" I said "No, I want to fast and pray about our future, but if it bothers you I will eat with you." He said "No, I'll get something when I'm ready." I said "OK. I'm going to put these groceries away and go for a walk," then he left for his usual afternoon run. That was the last conversation that I had with the Mike that I knew. In a matter of probably 15 minutes our life, as we knew it, came to an end. He walked out the door and did his stretches. (I couldn't see him, but he'd been doing this for all 28 years of our marriage so I knew it by heart) - stretch, run, sit-ups, push-ups. I put away the groceries, put on my walking shoes, and went out to walk.
I got to the back of the apartment complex when I received the call that Mike had been involved in an accident. When the realization hit that Mike was running, not driving, I started to run. For some reason I ran to the office thinking the manager told me the police were there, but the office was locked. Then I looked and saw flashing lights down the road and I knew it was bad. I took off running again. The maintenance man saw me and came and picked me up with the golf cart. I got to the scene of the accident and I saw the ambulance as I looked for the person in charge. The apartment manager pointed out the police officer and I went to him and said "I'm his wife." Immediately, the very distraught woman that he was talking with turned to me and said hysterically "I am so sorry! There was nothing I could do!" I have no idea what I said to her. The policeman asked basic questions and told me Mike was already in the ambulance and it was ready to go. I could follow as soon as I finished answering his questions. I am so thankful that God spared me from seeing Mike on the road all broken and bleeding. Honestly, in my mind all I see is the golf cart, the people on the side of the road, and an ambulance. I saw, I think, a small white pick-up truck, but I never looked at the front of it. I never noticed glass, blood, or anything on the road. I believe God protected me from having those images in my mind which would be hard to erase.
I got myself together and drove to the hospital. At that moment I never thought about calling anyone to go with me. I still did not know how bad it was and since Mike has had several minor accidents in the past, I was just thinking he'd be fine again. No one had told me anything about his condition yet and I had not seen the truck hood. A woman at the scene had told me he was moving, so she thought he would be alright. I called Pastor Tony on my way to the hospital and tried to reach another friend. The first person I saw at the hospital was one of the police officers. He arrived with a bag that had Mike's torn and bloody shoes in it. Then I was called to a small room where various people and doctors came in and spoke with me and I was basically clueless to what they were really trying to tell me. That my husband was in very critical condition. Nothing was really registering. They told me he was being prepped for surgery on his legs and I could come see him for a brief moment. I got back there and saw his clothes on the floor that had been cut off of him, they had tried to clean up the blood and they had him covered except his face. His face was perfect - not a scratch. He looked pale, but good; however, I didn't see what was under the sheet. I didn't ask to, and I'm sure they didn't want me to. It was all very quick and they whisked him away to surgery. He had lost a lot of blood they said. Did I want his clothes? No. In order to get him to surgery, as soon as possible, and before getting all of his personal information, he had been given the code name "Code Trauma Horseradish". Seemed like a bit of humor a midst all the crisis, and yet I forgot it when I later tried to get a status update. Thankfully, the nurse knew to ask if he had a code name and found him right away.
I had no control there. None whatsoever and yet, all of a sudden I had all of the control in making decisions for Mike. I was his Power of Attorney, his wife, and he was totally incapacitated. He would be drugged to be kept calm and to help with the shock and pain. Everything seemed to go so slow that night, the accident happened around 4:00 pm. He went into surgery as soon as they had him stable. His lower legs were badly broken and they were open wounds which had to be dealt with quickly. Our church family from West Fayetteville was wonderful. They came in droves. It was a Wednesday night so they were at church when they heard and many came. The first to arrive was our dear friend, Ryan. He left the church as soon as he heard. What a comfort to have him there and he stayed the entire time, even following me home after midnight to be sure I got into the apartment safely. The surgery took a long time since Mike's legs were so badly broken and the skin torn apart. They had to get the bleeding stopped, the bones somewhat set, and the skin closed. External fixators where installed - big old metal things with bolts into his legs to hold them still and the bones together. We were waiting to hear that he was in a room and I could go see him, when our friends, David & Judy, popped into the waiting room and told us they had seen him! No one had come to tell me, but they had just arrived, asked about him, and been taken to his room. He looked rough - tubes all over his pale face and body attached to various machines which were beeping and flashing. There was absolutely nothing I could do to fix him. This was no fender bender.
And now I have all kinds of control that I don't even want. Today (Sept. 18) I was put under a court order to be Mike's legal guardian and conservator. I don't want all of this control and yet it is thrown in my lap. I have been reading in Job, again God's perfect timing.
Job 12:10-25 says:
In his hand is the life of every creature and the breath of all mankind.
Does not the ear test words as the tongue tastes food?
Is not wisdom found among the aged? Does not long life bring understanding?
To God belong wisdom and power; counsel and understanding are his.
What he tears down cannot be rebuilt; the man he imprisons cannot be released.
If he holds back the waters, there is drought; if he lets them loose, they devastate the land.
To him belong strength and victory; both deceived and deceiver are his.
He leads counselors away stripped and makes fools of judges.
He takes off the shackles put on by kings and ties a loincloth around their waist.
He leads priests away stripped and overthrows men long established.
He silences the lips of trusted advisers and takes away the discernment of elders.
He pours contempt on nobles and disarms the mighty.
He reveals the deep things of darkness and brings deep shadows into the light.
He makes nations great, and destroys them; he enlarges nations, and disperses them.
He deprives the leaders of the earth of their reason;
he sends them wandering through a trackless waste.
They grope in darkness with no light; he makes them stagger like drunkards.
God is in control. What I didn't know that first night was that Mike had brain injury and it would turn our world upside down, topsy-turvy, inside-out and be devastating in so many ways and it still continues. This is almost 17 months post-accident and it's not over yet. When reading Job, it dawned on me, I am not in control at all, I cannot change or heal Mike. What is exactly wrong with him and how long he'll be this way is only known to God. I have guardianship, because Mike is mostly like a small child. Is this all due to the TBI or prior-dementia? Only God knows. He seems to be getting worse or at best, stuck where he is. Most with brain injury have a slow recovery, but he seems to be stuck or going backwards. I'm still trying to come to grips with this hard reality. I cannot fix Mike or even take care of him anymore. It is more than I can handle.
Then today (18th) my sister-in-law, Jenney, called and told me something the Lord spoke to Mark or an impression that Mark had while in prayer. I've been praying that the Lord would provide a facility for Mike close to me so that I could be more involved with him; however, I think that was all to make me feel better. What was impressed on Mark was the importance of having Mike in the best possible place for him, whether that is close to any family or not. So much of the time he doesn't know what is going on, he doesn't understand, doesn't recognize me. I'm not discounting that God can still get him out of this prison of his mind. I believe that God can, but may not choose to because he has a greater glory and purpose in mind. This is very hard and I still have days like today when I just feel it is too hard, emotionally it is too much and I cry out to God to do something! Bring about some change, please! The guilt of going on with life while he is trapped in his mind and unable to take care of himself at all while tucked away in some facility can overwhelm. Yes, I have legal control, and yet no control. I cannot change Mike in any way, shape, or form. I never have been able to and never will be able to. He is in God's hands! God alone has control! Maybe that is the lesson that I need to learn, so that anything that changes with Mike, all the glory is God's. All of it. ALL OF IT! I cannot take credit for anything in Mike's life and how it might change from now on or how it has been, or will be. Mike is in God's hands.
Kim shared something in Sunday School from a movie about babies coming into the world with hands clenched - they are grasping, needing and wanting everything for themselves. Then when people die their hands are open, they finally learn to let go.
Lord, help me to open my hands to you now. To let go and trust that you will do what is best for Mike, in your time. You will be there for Mike, you are who he always needs. Please find the best place for Mike, Lord, wherever that is, and help me to say goodbye to control. I love you, Lord Jesus. Please give me your peace. Amen.
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Being so totally human, I often lose my focus and have to be reset. Focusing on the problem is like being rolled by an ocean wave, caught in the tide, unable to breathe. Focusing on my Lord, even in the midst of doing what I have to as Mike's guardian/advocate, brings clarity and determination and peace. Turn your eyes upon Jesus. The things of earth will get dimmer. Such a great message in song. Thank you for praying and walking along side of us on our adventure with God.
Saturday, September 28, 2013
Who’s the Giant?
Last Monday, our good friend, Elke, from Canada arrived to
spend several days with me. It is such a joy to have her here. Mike and I first
met Elke and her husband, Gert, in Palau so we have a fairly long history
together. Being missionaries on small islands in the Pacific tends to closely
connect the foreigners (aliens). We actually had to register as aliens while
living there. Doesn’t that sound funny? We’ve enjoyed visits to Canada and they
have visited us in the states throughout the years. Elke has jumped right in
and helped with whatever is going on. We’ve painted the front of the rusted
refrigerator, made home-made ice-cream for the church lawn supper which is
tonight, planted flowers, hung clothes on the line, and even started
scraping/power washing the barn, etc. With my nephew, T.R.’s, wedding coming up
in mid-October, there is lots to do.
Wednesday evening, Elke, Silvia, and I enjoyed eating out
and just talking together. Thursday morning, Silvia put out a wonderful breakfast which we leisurely enjoyed together. I called NR and was told Mike was having a fantastic morning. The staff said he woke
up happy, smiling, and laughing. Somehow he got stuck on saying “I’m the giant.”
Tina would jump in front of him and say “Who’s the giant?” and Mike would
smile, chuckle, and say “I’m the giant.” He thought it was funny also, when I
would stomp toward him saying “Fe, Fi, Fo, Fum.” We spent several hours with
him and he was like that the whole time. We really were interacting with him as
if he was a child, but that is what made him laugh, and it was a joy to see. We
walked, went to the park and tossed the football around a lot. I was trying to
help Elke with her throwing technique and at one point said “Am I teaching her
all wrong, Mike?” and he smiled and said “Yes.”
When I asked him to teach her, all that would come out was “I like
football” which is what he had been repeating previously. Is hard to know if he
was thinking something else and that’s all that would come out, but he did not
seemed distressed in any way. I was going to try to give Elke a break from
tossing with him, but at that point he only wanted to throw to her. He still throws a beautiful spiral and
usually catches the ball if not thrown too hard. Later, at the park, I acted
like a center, and told Mike to do the count. He did, ending in "hike". One time, instead of
throwing the ball to anyone, he came slowly over to me, got real close, and said
“You go out.” How fun – a huddle! Elke noted that the more we played, the more
stable he seemed on his feet. Now he was
turning from me to her to throw or catch. Mike enjoyed swinging, went down one slide, and then
was ready to go back and rest. What a delightful time with him.
On Wednesday, we left at 5:45 a.m. in order to meet Mike and
the NR staff at the neuro-surgeon’s office in Roanoke. On Sunday night, Mike
fell and hit his head, leaving a laceration just above his right eye on the
brow. Sunday night he was taken to the emergency room and received a few
stitches and staples. He seemed fine otherwise, so he returned to NR where they
checked him every 3-4 hours to be sure he was alright. On Monday, Mike had an
appointment to have his right pinkie finger x-rayed due to swelling. The
previous Friday, Dr. McCrady had written an order for a CT scan. He felt that
the CT scan would show whether Mike had normal-pressure hydrocephalus and he
did not want to put Mike through sedation and the possibility that he would
have to spend a night in the hospital in order to get an MRI. While at the
pinkie appointment, the nurse noticed the order for the CT. Since Mike was
being very cooperative, approval was given to go ahead with the scan right then
also. The pinkie x-ray revealed no break.
The CT scan ruled out hydrocephalus, but did show a small
amount of blood in the subarachnoid space at the spot where Mike had hit his
head the previous evening. The radiologist or doctor who read the scan did not
think it was significant, but Dr. McCrady wanted to be sure; therefore the
appointment with the neuro-surgeon, Dr. Frasier, on Wednesday. Dr. Frasier
confirmed that it was insignificant and quite normal for the type of injury
Mike had received from his fall on Sunday. I tried to ask the doctor some other
questions and see if he would read the scan to me, but he was rather blunt and
only wanted to deal with the reason Mike was there. At least I have all of the
scans/MRIs on disk now and hope to get an appointment with Tracey’s friend to
read them to me. Everyone who has
reviewed the scans has mentioned the atrophy (shrinkage) in Mike’s frontal
lobe. This means, at least in part, that there is a loss of neurons and the
connections between them. (You’ll have to Google it for more details.)
Mike was very calm Wednesday morning at the doctor’s office.
After the appointment, we all returned to NR, minus the calmness. Mike was
quite agitated the rest of the morning. We figured he was probably tired since
he had to be up and out so early. I tried to help him eat something, and he ate
a little, but couldn’t be still and was in the grabbing mode. Dr. Rooker, the psychiatrist, came by and I
was able to talk with him briefly. He said Mike’s case is a bit unusual in that
nothing in particular seems to make a lasting difference. After thinking it
over, the next day Srdj, RN, told me that Dr. Rooker decided to taper off the
Klonopin and start Depakote. Depakote was tried about a year ago, but Mike was
on so many medications at the time that we could not tell if it helped or made
things worse or was interacting with something else. It is mainly used for
seizures, but also for manic episodes or bi-polar disorders. It takes a few
weeks to get into the system.
Elke and I left soon after, in hopes that Mike would settle
down and rest. We had planned to return
later, but he stayed much the same the rest of the day so we did not return. We
walked around downtown Blacksburg, ate lunch, went shopping for some things for
Mike, and then went to Silvia’s and worked on making a photo album for Mike.
The Speech Therapist wanted photos with names on the back to use in working
with his memory.
Wednesday evening, Elke, Silvia, and I enjoyed eating out
and just talking together. Thursday morning, Silvia put out a wonderful breakfast which we leisurely enjoyed together. I called NR and was told Mike was having a fantastic morning. The staff said he woke
up happy, smiling, and laughing. Somehow he got stuck on saying “I’m the giant.”
Tina would jump in front of him and say “Who’s the giant?” and Mike would
smile, chuckle, and say “I’m the giant.” He thought it was funny also, when I
would stomp toward him saying “Fe, Fi, Fo, Fum.” We spent several hours with
him and he was like that the whole time. We really were interacting with him as
if he was a child, but that is what made him laugh, and it was a joy to see. We
walked, went to the park and tossed the football around a lot. I was trying to
help Elke with her throwing technique and at one point said “Am I teaching her
all wrong, Mike?” and he smiled and said “Yes.”
When I asked him to teach her, all that would come out was “I like
football” which is what he had been repeating previously. Is hard to know if he
was thinking something else and that’s all that would come out, but he did not
seemed distressed in any way. I was going to try to give Elke a break from
tossing with him, but at that point he only wanted to throw to her. He still throws a beautiful spiral and
usually catches the ball if not thrown too hard. Later, at the park, I acted
like a center, and told Mike to do the count. He did, ending in "hike". One time, instead of
throwing the ball to anyone, he came slowly over to me, got real close, and said
“You go out.” How fun – a huddle! Elke noted that the more we played, the more
stable he seemed on his feet. Now he was
turning from me to her to throw or catch. Mike enjoyed swinging, went down one slide, and then
was ready to go back and rest. What a delightful time with him. 
I just started 2 Corinthians this week and want to leave you
with the following verses:
2 Cor. 1:10 & 11
He has delivered us from such a deadly peril, and he will deliver us. On him
we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our
behalf for the gracious favor granted us
in answer to the prayers of many.”
You are all such an important part of this continuing
adventure in our lives. Without the prayers of many, I know this would be so
much harder. Thank you for your perseverance in prayers and love to us. It
means so very much.
Saturday, September 21, 2013
MRI and Our Father's Love
The second time they tried to have an MRI done, Mike was given Xanax. After one dose, he was not calm enough to be still so they gave him another dose and waited before trying the MRI. He remained still for 4 minutes, but that was it. That facility is not able to sedate him so a new order must be written by the doctor for a different hospital about 1 hour away from NR. Mike was to see Dr. McCrady yesterday, so I hope he wrote the order. Dr. McCrady doesn't think Mike shows enough symptoms to have normal-pressure hydrocephalus. The psychiatrist, Dr. Rooker, would like to be sure and so would I; therefore, I am being persistent in requesting that it be done.
On my return trip from Ohio, I stopped in Blacksburg to spend time with Mike on Sept. 12 & 13. He was having fairly good days. We tossed the football together and took a walk. When he headed to supper, I just slipped out the side door and went to Silvia's. It was such a pleasant night. My cousin, Todd, came over and grilled hamburgers and we sat on the deck. I really enjoyed just sitting and talking with Todd and Silvia. It felt so normal and the conversation was light and easy. Friday morning Mike was agitated and wouldn't eat his breakfast. I had brought him home-made zucchini bread and was able to encourage him to sit and wait while it was cut and brought to him. He is so impatient about everything. His food has to be cut in small pieces and given to him little by little or else he gorges and chokes. After that, he went for a ride with the LST while I grabbed his razor and football, went to Wendy's for burgers, and met them at the park. He had calmed down by that time. (often a ride does that) We walked to a shelter and I asked him to eat slowly, giving him the entire hamburger. I was so proud of him as he did eat slowly. He also conversed with me a little. Asking for more french fries, or what was in the bag, etc. I asked if he would like to shave after lunch and received a "yes". He shaved himself a little and then allowed me to finish shaving and even trim his mustache & hair. Mike was always meticulous about his personal appearance and it is hard to see him so scruffy. He just won't do it on his own and won't let anyone else help him either. The NR staff tries, but it is very difficult to shave a moving target. This was the first time he let me do it since he's been at NR. I asked him to try to shave every morning after his shower and he said he would, but we've had that conversation before.
After enjoying the park for a while, he wanted to go shopping. He needed a few things from the grocery store and did well while we were there except repeating over and over that he didn't need toothpaste. He and the LST headed back to NR and I headed back to the farm. Departures are just easier if I don't say anything about leaving.
Back at the farm, I'm trying to get into a routine. After time with the Lord and breakfast, I am spending 2-3 hours in my room making phone calls, searching the internet, e-mailing, paying bills, filling out papers, etc. I'd much rather be out working in the yard, but I have to research and make plans for the long-term. I've never enjoyed research and am tired of dealing with all of this, but it's not going away. I figured if I spend a few hours a day it won't overwhelm me and I'll chip away at the process. Had a real breakthrough yesterday when I found my old budget sheets from 2009-2011. I needed some information from these in applying for Medicaid. That was a huge weight off of my mind. I celebrated by spending the afternoon pulling up old flowers and weeds and planting pansies and mums! Daddy always has some project going that I can usually help with in some way, I help Coley feed the calves occasionally, and help Mom with housework and meals some also. Some way or other, the rest of the day gets filled up with no problem.
We had the Guardian hearing on Wednesday, but I'll save that for another post. I've had some things on my mind and so that night I made a recording on my phone. It's 22 minutes long so I'll try to condense it when I write it here.
I want to leave you with the lyrics to "How Deep the Father's Love for Us" written by Stuart Townend - Wonderful words and a beautiful melody that has been running through my head for several days.
http://www.youtube.com/watch?v=YV2zMZ-nZ7k Listen to the song.
http://www.youtube.com/watch?v=BdVQNyQmdM4 The story behind the writing of this song.
On my return trip from Ohio, I stopped in Blacksburg to spend time with Mike on Sept. 12 & 13. He was having fairly good days. We tossed the football together and took a walk. When he headed to supper, I just slipped out the side door and went to Silvia's. It was such a pleasant night. My cousin, Todd, came over and grilled hamburgers and we sat on the deck. I really enjoyed just sitting and talking with Todd and Silvia. It felt so normal and the conversation was light and easy. Friday morning Mike was agitated and wouldn't eat his breakfast. I had brought him home-made zucchini bread and was able to encourage him to sit and wait while it was cut and brought to him. He is so impatient about everything. His food has to be cut in small pieces and given to him little by little or else he gorges and chokes. After that, he went for a ride with the LST while I grabbed his razor and football, went to Wendy's for burgers, and met them at the park. He had calmed down by that time. (often a ride does that) We walked to a shelter and I asked him to eat slowly, giving him the entire hamburger. I was so proud of him as he did eat slowly. He also conversed with me a little. Asking for more french fries, or what was in the bag, etc. I asked if he would like to shave after lunch and received a "yes". He shaved himself a little and then allowed me to finish shaving and even trim his mustache & hair. Mike was always meticulous about his personal appearance and it is hard to see him so scruffy. He just won't do it on his own and won't let anyone else help him either. The NR staff tries, but it is very difficult to shave a moving target. This was the first time he let me do it since he's been at NR. I asked him to try to shave every morning after his shower and he said he would, but we've had that conversation before.
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| Shaving at the park. |
Back at the farm, I'm trying to get into a routine. After time with the Lord and breakfast, I am spending 2-3 hours in my room making phone calls, searching the internet, e-mailing, paying bills, filling out papers, etc. I'd much rather be out working in the yard, but I have to research and make plans for the long-term. I've never enjoyed research and am tired of dealing with all of this, but it's not going away. I figured if I spend a few hours a day it won't overwhelm me and I'll chip away at the process. Had a real breakthrough yesterday when I found my old budget sheets from 2009-2011. I needed some information from these in applying for Medicaid. That was a huge weight off of my mind. I celebrated by spending the afternoon pulling up old flowers and weeds and planting pansies and mums! Daddy always has some project going that I can usually help with in some way, I help Coley feed the calves occasionally, and help Mom with housework and meals some also. Some way or other, the rest of the day gets filled up with no problem.
We had the Guardian hearing on Wednesday, but I'll save that for another post. I've had some things on my mind and so that night I made a recording on my phone. It's 22 minutes long so I'll try to condense it when I write it here.
I want to leave you with the lyrics to "How Deep the Father's Love for Us" written by Stuart Townend - Wonderful words and a beautiful melody that has been running through my head for several days.
| Lyrics: |
How deep the Father's love for us,
How vast beyond all measure
That He should give His only Son
To make a wretch His treasure
How great the pain of searing loss,
The Father turns His face away
As wounds which mar the chosen One,
Bring many sons to glory
Behold the Man upon a cross,
My sin upon His shoulders
Ashamed I hear my mocking voice,
Call out among the scoffers
It was my sin that left Him there
Until it was accomplished
His dying breath has brought me life
I know that it is finished
I will not boast in anything
No gifts, no power, no wisdom
But I will boast in Jesus Christ
His death and resurrection
Why should I gain from His reward?
I cannot give an answer
But this I know with all my heart
His wounds have paid my ransom
(REPEAT)
|
http://www.youtube.com/watch?v=BdVQNyQmdM4 The story behind the writing of this song.
Monday, September 9, 2013
Mike's Birthday
Mike's birthday was August 26. On August 31, Mike's Mom, his brother's family (Mark, Jenney, Maggie, Sam), Keegan, Amy and I all met in Blacksburg at the municipal park (aka Caboose Park) to celebrate Mike. Two of the staff members at Neuro-Restorative brought Mike out to the park once we were all set up. At first Mike just walked around in the shelter not saying anything. I fixed him a plate of food and eventually he sat down, but the answer to every question was "no". He would push his plate away, but if we put food on his fork he would open his mouth and eat it. After eating, the group went over to the caboose and swings. He enjoyed getting up on the caboose, turning the brake wheel, and saying "woo, woo". While cute, it is also heartbreaking because at 57 years old he is so child-like. Later he got on a large plastic chair swing and they said he had a huge smile on his face. I had gone back to the pavilion so missed that. Even though he never called anyone by name, it was obvious that he enjoyed the day. Whether it was because we seemed familiar or just because it was outside with lots of people, we'll never know.
When asked if he was ready to open gifts, he said "no". We waited a while and then tried again - "no". So I opened them and gave them to him. Hugh and Tracey sent him a pair of shorts that are OSU colors and he wanted to immediately put them on, so we just pulled them up over his other shorts. Mom R. gave him an OSU t-shirt and socks and I threw in a VT football - I mean he is in Blacksburg after all! Mark & Jenney gave him a bag of paper, pens, markers, etc. and he received fun cards. Later, my cousin, Keleigh, who is a photographer on the side, came to take some pictures for us. About that time, it started to thunder and the clouds were rolling in. We were able to get some photos, but Mike was becoming increasingly concerned about the approaching storm and wanted to leave. So the staff and Mike headed back to NR, we took a few more pictures, and then packed up our picnic. Mark and family headed back to Ohio and the rest of us headed to our hotel. These are my amateur pics, will post the professional ones when I get them.
When asked if he was ready to open gifts, he said "no". We waited a while and then tried again - "no". So I opened them and gave them to him. Hugh and Tracey sent him a pair of shorts that are OSU colors and he wanted to immediately put them on, so we just pulled them up over his other shorts. Mom R. gave him an OSU t-shirt and socks and I threw in a VT football - I mean he is in Blacksburg after all! Mark & Jenney gave him a bag of paper, pens, markers, etc. and he received fun cards. Later, my cousin, Keleigh, who is a photographer on the side, came to take some pictures for us. About that time, it started to thunder and the clouds were rolling in. We were able to get some photos, but Mike was becoming increasingly concerned about the approaching storm and wanted to leave. So the staff and Mike headed back to NR, we took a few more pictures, and then packed up our picnic. Mark and family headed back to Ohio and the rest of us headed to our hotel. These are my amateur pics, will post the professional ones when I get them.
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| Mike really enjoyed the caboose at the park. Woo! Woo! |
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| Mom R. and Amy enjoying the day. |
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| Mike with his new OSU-colors shorts on and tossing his new VT football with Keegan. |
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| A beautiful, hot day to celebrate Mike's birthday. |
Mom R., Keegan, Amy and I had a light supper in downtown Blacksburg at The Cellar Restaurant. Was such a nice evening after the thunder storm and we enjoyed sitting outside watching all the Hokie fans go by. Amy is having to be a bit careful about what she eats now, since it doesn't all agree with the baby. That's right! Mike and I are going to be grandparents in April 2014! So exciting! She is doing well, just keeps crackers or dry cereal handy. Please keep them in your prayers. Here is a link to Keegan's blog telling about all the changes in their lives.
When I told Mike he was going to be a grandfather, it didn't seem to register. Then a few minutes later he said "I'm a proud parent." :-)
Keegan and Amy left early Sunday morning headed to Raleigh to their previous church and a wedding that afternoon. Mom and I had breakfast and then went to see Mike. It was not one of his good days. We had some chaos at the very start where Mike grabbed a staff member and would not let go. This caused two other residents to get upset, and Mike fell. He was OK. I'm sure the staff member probably still has a bruise. We finally got outside to take a walk with him repeating a strange phrase. I started to sing hymns and encouraged him to sing with me. Thankfully he did join in and we sang several hymns as we walked. Such a precious time. It was lunchtime when we returned and Mom R and I wanted to get on the road headed to Ohio. Mike became very clinging with me. He pushed his Mom away and grabbed me. I stayed with him so he would eat. It's hard to know if he really knew who I was or if he was just clinging to me because I had been with him. One day when I was there he kept grabbing a staff member named Mike, and saying "I choose you." He has a very strong grip and we have to pry his fingers off. He had grabbed and squeezed my right hand so hard, that it ached for the rest of the day. I had to sneak away a while later and have no idea what the staff had to deal with once I was gone. The other Mike was there with him so he probably settled on down. Mike is very good with him.
I am still in Ohio. It has been a real blessing to meet some of the folks here who have been supporting Mom R. and us through prayers and encouragement. Always nice to put a face with a name. Is hard to believe it has been almost 2 years since I've been in Ohio. Mom R. has moved and now I can picture her in her new place also. We've taken care of some errands for her, enjoyed eating out, movies (at home), meals with Mark's family, watching Sam play football & Maggie play field hockey, and I'm getting some of my paperwork done, as well. As a family, we met concerning the next steps for Mike and it helps me so much to have their wisdom, support, ideas and encouragement.
Here are some specific prayer points:
1. It is currently 11:00 a.m. and the Guardian Ad Litem should be arriving in Blacksburg to speak with Mike and the staff there at any minute. The Guardianship hearing has been set for September 18 in Richmond Circuit Court. God's will be done.
2. Mike is scheduled for an MRI this Wednesday at 9:30 a.m. Was supposed to be last week, but he was too agitated. They will give him a Xanax prior this time and hope that will be enough to calm him and help him be still. I'm trying not to doubt and be tossed like a wave on the sea. Pray he will be able to lie still and this MRI can be completed. This is for prognosis, comparison, and the possibility that he has normal pressure hydrocephalus. We are praying that he does, because this is treatable and may help with his gait and incontinence. Please join us in this prayer.
3. I have appealed BCBS's decision to stop coverage when Mike was in Tucker Psych. Pavilion. They did not cover the last two weeks he was there. Please pray we receive a favorable reply from the appeal.
4. I am starting the search for a long-term facility and need to start the process to get Mike on Medicaid. Please pray for God's leading in all of this and that it will go smoothly without too much frustration and phone tag. Pray the facility is close to home so I can be involved with him and his care more easily and regularly. Pray for God's timing regarding the eventual transition for Mike.
5. Continue to pray for a Miracle of healing in Mike! I pray for Mike's healing all the time and, to be honest, I ask God if that means here on this earth or perfect healing at home with the Lord, I leave that in His hands. It is so hard to think of Mike like this for years to come, but I pray for strength to accept that also, if it is God's will. Then there could be an in-between that many with brain injury live with every day. Only God knows and I will trust Him and believe that He will give us strength for whatever the future holds.
Thursday, August 29, 2013
Information
I have really been procrastinating writing this blog, but
here goes…. A couple of weeks ago, my
sister-in-law, Tracey, came over to discuss Mike’s CT scans. She had taken the
disk I had from WakeMed and had one of her associates (actually his brother, I
think) review the scans. One was taken in early June just after Mike arrived at
WakeMed and the other was taken in October after Mike had fallen and hit his
head. There was no change in the scans. The good news of that is he did not
receive more damage in the fall, the bad news is there was no improvement from
the initial TBI. Tracey asked if Diffuse Axonal Injury (DAI) had been explained
to me. No, I’d never heard those words.
I heard swelling and bleeding on the brain and shearing.
Here is a link to a short video explaining DAI http://www.youtube.com/watch?v=2RgzIjeKbXo
and here is a portion of Wikipedia’s definition:
Diffuse
axonal injury (DAI) is one of the most common and devastating types of
traumatic brain injury, meaning that damage occurs over a more widespread area
than in focal brain injury.
Unlike
brain trauma that occurs due to direct impact and deformation of the brain, DAI
is the result of traumatic shearing forces that occur when the head is rapidly
accelerated or decelerated, as may occur in auto accidents, falls, and
assaults.
The
major cause of damage in DAI is the disruption of axons, the neural processes
that allow one neuron to communicate with another. Tracts of axons, which
appear white due to myelination, are referred to as white matter. Acceleration
causes shearing injury, which refers to damage inflicted as tissue slides over
other tissue. When the brain is accelerated, parts of differing densities and
distances from the axis of rotation slide over one another, stretching axons
that traverse junctions between areas of different density, especially at
junctions between white and grey matter. Two thirds of DAI lesions occur in
areas where grey and white matter meet.
The
lobes of the brain most likely to be injured are the frontal and temporal
lobes.
Mike’s frontal lobe has severe DAI. (Here is a good link
that describes the functions of the Frontal Lobe. http://voices.yahoo.com/frontal-lobes-brain-functions-they-361802.html.)
From a medical standpoint, the Axons and Neurons have been severely sheared to
the point that they cannot regenerate or reconnect and no amount of therapy or
rehabilitation is going to help him recover. I’d never seen the images or had
them explained to me and I guess that was a good thing, because I would not
have been ready to hear it or understand it.
I still don’t really understand, but have lived through enough in the past
16 months that it does help make some sense of all the chaos. I do wonder how he can have those seemingly
lucid times, if the damage is so great, but as Tracey reminded me, even when he
seems clear, he is still not rational and does not think there is anything
wrong with him. Also, those times are few and far between. He’s had some very rough days this week at NR. Even grabbed a staff member by the throat and
threatened to kill them. This is NOT the Mike I married, but I am coming to
grips with the fact that it is who Mike is now and unless God intervenes, this
is our reality.
I am reading Beth Moore’s book Believing God. Here are a few quotes that I wrote in my
journal on Aug. 12, the day before Tracey and I talked. God’s perfect timing. “All
that will matter forever and ever in our heavenly state is the glory that came
to God through our lives. Life is just a breath.” Mike was always such an
out-spoken advocate for God. I believe and pray that people will remember him
in that way, not as he is now.
Beth talks about how God is able to do anything, He can
perform a miracle in Mike’s brain, healing him perfectly, that is not too hard
or impossible for God. However, God may not choose to do so, because He has a
greater purpose in mind. “If I don’t get my miracle, but God gets
greater glory, I choose to believe I received the greater miracle with the most
eternal dividends. Undoubtedly and ultimately we will be most blessed when God
is most glorified.” If somehow our
story causes someone to come to know Jesus as their Savior, or strengthens
another Christian, or helps someone else whose life has been flipped this way
and that to focus on God, then Praise be to God! Do I still pray for Mike to be healed? Absolutely!
Will I still advocate for the best care and stick by him? By all means! I
will continue to hope and expect improvement, but I will also research
long-term facilities, because the reality now is that I cannot bring him home
any time soon and maybe never.
The last think I wrote in my journal that day was: “2
Corinthians 4:16-17 I pray this is true for Mike – that he is inwardly being
renewed day by day.”
2 Corinthians 4:16-17
“Therefore we do not
lose heart.
Though outwardly we
are wasting away,
yet inwardly we are being renewed day by day.
For our light and momentary troubles
are achieving for us an eternal glory
that far outweighs them all.”
Wednesday, August 21, 2013
God's Math
Spiritual Journal Entry
Aug. 8, 2013
God's Addition
according to 2 Peter 1:5-7
+ Goodness
+ Knowledge
+ Self-control
+ Perseverance
+ Godliness
+ Brotherly kindness
+ Love
= Effective and productive in my knowledge of my Lord Jesus Christ.
Having eyes that see and remembering that I have been cleansed from my past sins.
Definition of Knowledge - "information and skills acquired through experience or education" How do we experience and educate ourselves about God? By knowing and obeying what He has given to us through His word and Jesus' example. Knowledge comes from God and the ability to follow His commands also comes from God. We just have to do the math and make every effort to add these in increasing measure.
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| Not sure he ever knew who I was. |
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| "I'm a strong man." Was his phrase of the moment. |
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| Enjoying horseshoes |
I stopped at NR to have a meeting with Lisa and visit briefly with Mike before going to my sister,
Vivian's, for a few days. Mike was perseverative, but we went for a walk with the PT and LST. Afterwards, he rode the stationary bike and played horseshoes. He stopped repeating and could answer questions appropriately. His balance is not great right now and they are trying to use a gait belt, but he doesn't like it. We tried it once before and it caused more problems because it frustrated him. I wouldn't like someone holding on to me all the time either, but then he falls more easily. He's also back to drinking thickened liquids and a mechanical soft diet. So, of course, I'm wondering if it's the Clonazepam that was a new med started at Tucker. Just from on-line reading, it says it can be a sedative or muscle relaxant. Thankfully, since being at NR, they have stopped 3 medications! I've voiced my thoughts on the Conazepam to Lisa and she's going to check with the medical director.
Aug. 14-19
 |
| 7:15 am Sunrise & clouds on the mountains |
While at their house, I received a couple of e-mails from Lisa the case manager at NR. Here are portions of those:
Aug. 16
I wanted to tell you that Mike has a had a couple of small falls the past two days. During one fall (9/14) he was playing horseshoes with staff outside and bent over to pick up the horseshoe and lost his balance. The second fall was yesterday and he tripped getting up from the table. Of course, he doesn’t usually want the gait belt on or contact guard assistance, but we are trying.
I also wanted to tell you what a great day he had yesterday. It sounds like the morning was a little rough (a little aggressive toward staff early in the morning) but the afternoon was great. Katie (LST) wrote this note in his daily notes: “Since 2pm, MR has been the best I have ever seen. Fully attentive; making sense, little repetition, asking to do things, gave 100% in Speech Therapy, smiling and laughing, trying to remember people’s names (staff). He wrote friends and family letters for a little over 2 hours this evening (his idea) and asked questions and was very polite all day. He was the happiest I have ever seen him and I feel blessed I got to spend today with him. He even told me, “I prayed for you earlier, Katie.”
Aug. 19
Mike had another great day yesterday. He helped drill and put together some stuff with the weekend Rec Therapist, Will. He also wrote some more family letters.
Isn't that great?! Yesterday I left Viv's and came back through Blacksburg to see Mike. Unfortunately, it was not a good day. Lots of repeating, the blank look, no recognition of me. I spent several hours with him, we played Sequence and went for a walk, but he really couldn't focus. Am heading back there now for a few hours and then on back to the farm. Am praying he's having a better day today.
Thursday, August 15, 2013
Rest, Reflect, Renew
The Well Retreat Center, what a blessed place to retreat to
in order to rest, renew, relax, read, reflect, respond, and meet with my Savior
and Lord, Jesus Christ. I went to The Well feeling fragmented and disjointed,
unable to calm the frantic pace that has been my life over the last 15 months
since Mike’s accident. Tom and Linda Ashe, the Directors, gave me “permission”
just to “be”, to sleep, and to follow the Holy Spirit’s leading as to what I
read and did while there. What a gift! I found peace, quiet, and a retreat from
all the responsibilities and pressures, plus found anew the hunger for more
time in God’s Word. I’ve learned again the absolute need to grow in the
knowledge of God through His word in order to stay pure of heart, and how
journaling helps to solidify it in my mind and keep Him as my focus and center.
I also relearned the importance of carving out time to rest and reflect. These I
will strive to carve out time for daily, pushing aside the drive to
constantly be busy with work or other activities. It has to be a conscious
decision to choose what is of greatest priority and make it happen. God will
meet me there. He is my all, my strength, my shelter, my strong tower, and
refuge from the storm. May He also be yours. There have been many things that
God has spoken to me through His Word and other books that I’ve read during my
retreat, and I will try to share and post these on a more regular basis in the
coming days.
The Friday & Saturday before going to The Well, I had a wonderful time visiting with our great friends, the Guthrie's. Is always a pleasure and joy to spend time with their amazing family and to see how the children continue to grow, mature, and blossom into beautiful children of God. I enjoyed some laughs with W & LL over peanut-butter-balls-gone-wrong and ended up with "AD" (addictive disaster) as AJ dubbed it which was delicious. I played carpet ball with the 3 youngest, enjoyed a couple of hours of just talking with Kristin, LL painted my toenails and fingernails, and I appreciated being prayed over by Zack. Then I was off to Keegan's best friend's wedding which was another joyful event.
Saturday night through Tuesday morning, I enjoyed spending
time with Keegan and Amy in their apartment. We played games, ate well (Amy is
a great cook), swam in the pool, and had some great conversations. My mom would
always say she liked to be able to “picture” us in our homes and it really is a
blessing.
Saturday night as I was lying in my bed back at the farm, I
was praising God and being grateful for the gift of time with friends, family,
Him and respite when a real sense of freedom, peace, and release came over me
quite unexpected, yet very welcome. As though through praising, I finally let
go of the last bits of burden and care that I’ve been carrying around and put
my total focus, trust, and confidence in the Lord.
The Spirit keeps on bringing me to verses and reminders to “Stand
still” or some variation of the same message. Isaiah 7:9b “…if you do not stand firm in your faith, you will not stand
at all.” I Peter 5:8&9 “Be
self-controlled and alert. Your enemy the devil prowls around like a roaring
lion looking for someone to devour. Resist him, standing firm in the
faith, because you know that your brothers throughout the world are undergoing
the same kind of sufferings.” Did you notice that all the verses say “stand”? It is not a passive act, we are to be
standing, ready at a seconds notice to be obedient to our Master’s command,
ready to run from the devil’s attempts to devour us. I have heard recently of so many Christians
who have fallen into Satan’s snares. Evidently they were not standing still, or
on the alert, worldly allures can be very enticing. ANY of us can fall prey to
the enemy. I would like to ask you all to be praying for me, that I would not
fall into any traps that Satan is laying out to try to hurt my witness of Jesus
Christ. I want to stay alert, firm in the faith, and only move when God says to
move. It doesn’t even have to be a “big” stumble, there are a myriad of “small”
ways to stumble. Let’s increase our
knowledge of God’s word and our focus on Him so that we can stand still, firm,
and steadfast. Only listening, obeying, and moving at the sound of His voice.
There is Spiritual warfare. Let’s keep our shields up, our swords in hand, and
our armor on so that we bring Glory to God.
Wednesday, July 24, 2013
Stand Still!
“Stand still and see the salvation of the Lord.”
Exodus 14:13
Stand Still! This
is the word of the Lord to me today. I’ve
come to the realization that often I am too much of a doer and am not very good
at being still. Also, if things don’t
seem to be progressing the way I think they should, I tend to look for
alternatives or other solutions when I just need to be still and wait patiently
for the Lord to act.
I went up to see Mike on Sunday and Monday. He was sitting in his room, rocking back
& forth, and watching TV. At first
he didn’t seem to know who I was, but I crouched down beside him, took his hand
in mine and said “Hi, Mike, it’s Jennifer.”
He turned to me, tightened his hand on mine and tears started to fall –
his and mine. It seemed for a few brief
moments that he was “there” and knew that we were in a very sad situation. Then
he got up and told me he needed running shoes. We started looking for his and
couldn’t locate them. He became fixated on the need to go shopping for a new
pair, so for the next hour as we walked, talked, etc. that was almost his
entire focus. For the first time, I
talked with him about Keegan and Amy being married and showed him wedding
pictures. He took it all in stride, showing no signs of being upset about the
news. I was very thankful. I also asked Mike if he was being treated well and
he said yes. I commented that he seemed content and he said he was.
One of the LSTs (Life Skills Trainer), Laney, went with us
to Cookout where Mike ate very well and not too fast. He wanted to ride with her there and then
rode back with me. As we were driving, I
said “I really like Laney.” Mike said: “Yeah,
he’s a nice guy.” Me: “Um, Laney is a
girl. She just has really short hair.” Mike: “Are you sure?” Me: “Yes.”
Well, when we got back to NR, my cousin, Todd, came to visit. I was
introducing Todd to Laney and Mike adds “She’s a girl.” Then every time Mike said Laney’s name, he
added “a girl”. Too funny! Those LSTs have to laugh off a lot of stuff
and deal with even more.
We took another walk with Todd and although Mike didn’t do a
lot of talking, I believe he was following the conversation as he was smiling
at appropriate times. He seemed to enjoy listening and I think it does work
really well having 2 people who can talk together, because it is very difficult
to carry on a conversation with Mike. It
also helped having 2 family members, because we talked about people that Mike
knows. Afterwards, I helped Mike shave
and we lost part of his razor down the sink. Todd to the rescue! He took off the trap and retrieved the
part. I asked Mike where the other attachments
were and he said he threw them away because he didn’t know how they
worked. I tried to encourage him to ask
for help instead of just tossing items, plus encouraged him to try to shave
every day, which would make the task easier. Todd and I prepared to leave, so I
told Mike I would be back at 9:00 on Monday and kissed him goodbye. He was not bothered that we were leaving.
I followed Todd to his girlfriend’s house and stayed with
her Sunday and Monday nights. She is a
wonderful lady, great cook, and lives only a few miles from NR which makes it
very convenient for me. Silvia had prepared risotto and shrimp and it was
delicious. She gave me a key to her house and sometime during the day on Monday,
I misplaced it. Panic! The LST, Katie, Mike and I had been several places on
Monday, so I frantically ran around to everywhere we’d been and still no key. I
felt so irresponsible, was praying like crazy, and got up my nerve to call Silvia.
(Did I mention she is wonderful?) She just told me to come to her work and she’d
give me another key. After getting the 2nd key, I drove to her house,
took out my bag, and decided to look under the passenger seat, there was the
key! Praise God! Praise God! Praise God!
I have no idea how it ended up there, but was so very glad to find it! Thanks
for the prompting, Lord!
On Monday morning, I met with the case manager, recreational
therapist (he makes the daily schedules for the participants) and the
nurse. I had several concerns,
questions, etc., so we went through all of those and they filled me in on
therapies, daily happenings, etc. Monday was not a very good day for Mike. He was not as clear-minded as he had been on
Sunday afternoon. He was playing Monopoly when I got there, but immediately got
up when he saw me. He wanted to go buy new shoes. Thankfully, the staff found
his shoes in the laundry. We did take him for a haircut, but he had some
trouble sitting still and was concerned that all of his hair was going to be
cut off. At first he wanted all of it cut off. We tried to take him out for
lunch, but he became very agitated and started to be aggressive so we returned
to NR. Once there, it was like a 3 ring circus.
Two other participants were not doing well, so we took Mike to his room,
but could not get him distracted, he would only grab, push, etc. We finally got
him to sit down to eat and once he ate some, he started to calm down. We played
Sequence after lunch and then shot some basketball, and walked a bit. Then he
went to rest, and that’s when I discovered I had lost the key, so had everyone
looking for it. After Mike’s nap, he was in the perseverating and pacing mode,
and we could not get him to go to PT.
So basically, he’s exhibiting the same pattern – a few days
or a couple of weeks of being fairly lucid, and then right back to not well.
The psychiatrist has reduced the Zyprexa and upped the Neurontin. He would like
to get Mike off of the Zyprexa, if possible, but needs to go slowly. I know this, but realize our time there is
limited, so became anxious that things need to move more rapidly. I have voiced
some concerns to Lisa, the case manager, and we’ve been writing e-mails back
and forth. Mike is just not having long periods of lucidity, so it is very
difficult to do much with him at this point.
I know that the above scripture and the devotional that went
with it, is the Lord’s word to me right now and I have had a tremendous peace
today that I was not having Monday and Tuesday. I have to stay in God’s word to
make it through all of this. I’m also starting to see a counselor beginning
tomorrow and then going on an individual quiet retreat the first week of
August. I am also going to try to get
caught up on medical, dental, and vision appointments that I have neglected. (Tomorrow will be 15 months since Mike’s accident.) It has
been a joy to be able to just work in the garden and yard when I am home. The
weeds and grass grow faster than we can keep up with, but it’s good job
security and helps me sleep well at night. Harvesting squash, corn, cucumbers,
potatoes, onions, tomatoes, blackberries, etc. is so satisfying. We’ve even
made sweet and bread & butter pickles. It feels so good to be productive.
(See? There’s the doer in me!)
Last
week, I went out and had some fun. Hugh and Tracey had 2 IFYE (International
Farm Youth Exchange) students staying with them for 3 weeks. Florian from
Austria, and Tytti from Finland. On
Monday a week ago, I took them to Virginia Beach, and then Tuesday we spent the
day at Water Country USA. Thanks,
Wendell & Lynn, for the great D, B&B!
Then on Thursday, TR, Coley, Tytti, Florian, and I all went to Kings
Dominion and rode almost all of the roller coasters. I sat out of a couple of
the really jerky ones, but I did ride The Drop!
What a scream! Literally. It was
quite a thrill. It was a very hot day
and not very many people which made for short lines and lots of rides. Was really fun. I did think of Mike a lot. He always loved
amusement parks and being with others.
Sorry this is so long. I started to write a blog a couple of
times lately, but just couldn’t seem to find the words. I’ll leave you with a
portion of the devotional I mentioned earlier. It is, once again, from the
Spurgeon Morning and Evening
devotional book.
“Stand still and see the
salvation of the Lord.”
Exodus 14:13
“These words contain
God’s command to the believer when he is reduced to great straits and brought
into extraordinary difficulties. He cannot retreat; he cannot go forward; he is
shut up on the right hand and on the left; what is he now to do? The Master’s
word to him is, ‘Stand Still.’ It
will be well for him if at such times he listens only to his Master’s word, for
other and evil advisers come with their suggestions. Despair whispers, ‘Lie
down and die; give it all up.’ But God would have us put on a cheerful courage,
and even in our worst times, rejoice in His love and faithfulness. Cowardice
says, ‘Retreat; go back to the worldling’s way of action; you cannot play the
Christian’s part, it is too difficult. Relinquish your principles.’ But,
however much Satan may urge this course upon you, you cannot follow it if you are
a child of God……….What , if for a while thou art called to stand still, yet this is but to renew thy strength for some greater
advance in due time. Precipitancy cries, ‘Do something. Stir yourself; to stand
still and wait, is sheer idleness.’ We must
be doing something at once—we must do it so we think—instead of looking to the
Lord, who will not only do something but will do everything.”
When I looked up this verse in different translations, some
say “stand still” others “stand firm”. The first part of the verse is “But
Moses said to the people, ‘Don’t be afraid.’ God tells us that a lot. I need to
hear it a lot. I also like the next
verse #14. “The Lord will fight for you; you must be quiet.” I need to hear
that too. It's great to work, but being quiet before the Lord daily is of utmost importance too. So, I will work on being quiet,
standing firm & still, and watching the Lord fight for us.
“Don’t be afraid.”
"Stand Still."
Sunday, July 14, 2013
Write to Mike
I am sure Mike would really appreciate hearing from friends, family, and new friends who have been so faithful to pray for us and follow our adventure. His address is:
I am wondering if some of the medication he was put on at Tucker has slowed his reflexes. He had swallow problems while at WakeMed, but within a couple of months of being home, he was able to drink regular thin liquids. He will see the Psychiatrist this Wednesday, and Lisa said I would like him because he tries to get the residents on the least amount of medication possible.
Mike Rice
1510 Seneca Drive
Blacksburg, VA 24060
He can also have visitors and in an effort to make sure he doesn't get too many at any given time, here is a link to a Google docs spreadsheet for scheduling visits.
https://docs.google.com/spreadsheet/ccc?key=0AnmQxOyNMwyPdDVsTXZpNjFuYkltNHR0SUUyVnJoUkE&usp=sharing
This way I can check with the staff to see if it's an OK time to visit and let them know to expect someone. If he's having a good day, he can be taken out to eat, walk, shop, etc. A staff member will go along also, just in case there are any problems. I know that visitors cannot ride with the NR staff and Mike, but am not sure if NR staff & Mike can ride with the visitors. This is all new territory, so adjustments may need to be made in when and how people visit. I also understand that visiting may be uncomfortable for many, but even if Mike doesn't recognize you, at least he knows people care and have not forgotten him. It is also a real blessing and help to me knowing that others are checking in on him from time to time. I am 3 hours away so cannot visit often, plus believe he needs to get into a routine there and lose some of his attachment to me.
I wish all of the news coming from Blacksburg was as good as our trip there, Mike's first 5 days, and Mark and Lynn's visit; however, he has had some rough days this week. I am going to copy and paste some of the updates that Lisa, the case manager, has sent to me.
"I wanted to let you know that we made an appointment for Michael to see Primary Care today due to the amount of mucus he was producing. The primary care doctor believes it is aspiration pneumonia and wants us to put him on liquids nectar thick. He has a modified barium swallow study scheduled for next Tuesday, as well. The primary care doctor also put him on levaquin to treat the aspiration pneumonia."
I am wondering if some of the medication he was put on at Tucker has slowed his reflexes. He had swallow problems while at WakeMed, but within a couple of months of being home, he was able to drink regular thin liquids. He will see the Psychiatrist this Wednesday, and Lisa said I would like him because he tries to get the residents on the least amount of medication possible.
"His forearm and leg are no longer swollen. The nurse is keeping his eye on them. We have found out that taking Michael for a ride seems to help when he gets really restless and perseverative. They say he gets really quiet and sometimes falls asleep in the car. We noticed that, after a brief nap, he sometimes has better orientation and attention. He’s had a few bad days this week, unfortunately. It could be a combination of being ill and the new transition. Yesterday, he was a little more aggressive, pushing staff members who would attempt to help redirect when he was perseverative and wandering around. He has been evaluated for both OT and PT. I was with him for his OT evaluation. It was a really bad time for him. He was perseverating on an activity that he was doing earlier (color by number) and he kept repeating “6 is Black, 7 is light blue,” etc. It was difficult for him to follow directions for her assessment. He was in a much better place for his PT evaluation (it was after a nap) and was more cooperative. "
So, as you can see, he continues to follow the same pattern of days or moments of clarity and then days or moments of poor cognition. This is brain injury - I have to keep telling myself that. It is so encouraging when he has good days and can be very discouraging when he lapses back to incoherence. However, it seems that he has had longer periods of coherence, and in that there is hope of even longer periods to come. 2 steps forward, 3 steps back - this is brain injury. It is unlike any other injury that I've ever known so is very hard to understand and grasp.
Psalm 25:5
Lead me in Thy truth, and teach me:
for Thou art the God of my salvation;
on Thee do I wait all the day.
"It is our duty and our privilege to wait upon the Lord in service, in worship, in expectancy, in trust all the days of our life. Our faith will be tried faith, and if it be of the true kind, it will bear continued trial without yielding. We shall not grow weary of waiting upon God if we remember how long and how graciously He once waited for us." July 8 devotion from Morning & Evening by Charles H. Spurgeon
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