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.
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