Last Sunday I went back to church after being away for several weeks. How strange it felt to walk in without Tom with me. He seemed to be everywhere I looked--memories abound in our church building AND in the people he loved so much, and who loved him. I cried through every song. What is it about music that it just gets inside you and reveals feelings like nothing else. As I received hugs it was like Tom's hugs were coming back to me--he shared hugs with so many who are now sharing them back with me--each one a treasure.
"How are you?" AHHHHHHHH! There it was again--the question I've begun to dread. And yet I know that people care and want to know. It's just that I don't know--I wish I did. On my way north to visit my mother on Sunday I found part of the answer. While listening to a Christian radio station the song "It is Well With My Soul" came on. It was written by a man whose 4 daughters were all lost on a sea voyage. I found myself resonating with its message:
"When peace, like a river, attendeth my way,
When sorrows like sea billows roll
Whatever my lot, Thou has taught me to say,
It is well, it is well with my soul
Refrain: It is well with my soul, it is well, it is well with my soul.
Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.
Refrain: It is well with my soul, it is well, it is well with my soul.
My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and i bear it no more,
Praise the Lord, praise the Lord, O my soul!
Refrain: It is well with my soul, it is well, it is well with my soul.
And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.
Refrain: It is well with my soul, it is well, it is well with my soul."
It is well with my soul. At the very center of my being it is well and I am secure in the belief that God is sovereign, full of purpose and meaning. What I just woke up realizing was that the question, "How are you doing?" reminds me that I don't know what I'm feeling beyond that. Yes, I am at peace in the center of my being but there are feelings swirling and churning that I can't get ahold of. I've never been all that great at identifying feelings anyway. Now in the midst of loosing Tom I'm supposed to know how I feel? You mean beyond, "It just plain hurts?" More than that just takes too much effort to think through. OR maybe that's all there is--it is well with my soul AND it hurts.
Nobody teaches us how to grieve. I'm finding that it is a very individual thing. I'm surprised when I don't feel sorrow; I'm surprised when I do. I'm surprised by how good it feels to laugh--is it supposed to feel that good? (Oh, yeah, "feelings aren't right or wrong, they just are") Will life ever feel "normal" again or is this my new "normal"? Will the weight/cloud that engulfs me and makes me feel like it's too much effort to move stay with me or will I break free? In weeks, months or years? OK, enough questions. "Trust and obey, for there's no other way to be happy in Jesus but to trust and obey." Another song with a great message--simple but true. I think I can go back to sleep now trusting that I don't have to have the answers--I know the One who does.
Thursday, May 27, 2010
Friday, May 21, 2010
Tom is home
Today it hit me. Tom is gone. Even when he was so sick I still had him with me to care for--I could still touch him and do things for him that I knew he liked. I know he's in heaven and has him new body and voice and energy and health and all that makes me smile BUT it just hurts so much not to be able to be with him. I feel like I need to write and write and write to understand, to feel what I'm feeling but then again I don't know if I really want to feel it just cause it just hurts so much. I hate to cry--it hurts, too, and the throbbing head seems to last forever. It's true--grief DOES mug you and I've been brought to my knees after being slammed against a wall.
I need to go back to get down on paper what turned out to be Tom's last two weeks. The last year has been such a waiting game--knowing that at some point there would be a turn for the worse but when it happened it felt like such a surprise. April 28th pneumonia was back but this time it was different. Tom was not tolerating food and couldn't take the antibiotics without it. April 29-30 his breathing was very difficult and we used narcotics to help ease it but that also meant that Tom was heavily sedated. I knew that was what he wanted but it was still hard not to be able to talk to him again, to stop fighting against the infection and start letting go. Everything in me wanted to bring him back but then I saw how he was struggling and how could I want to bring him back only to go through this all over again?
Friends and family began coming to visit and to say goodbye. It was a like a beautifully choreographed dance with very little overlap between people. It was important to share this time with anyone who wanted to be a part of Tom's passing. Precious tears, prayers and memories filled the visits. People from our church brought though I confess it's a blur what we ate. What tender care we were wrapped in.
On Sunday, May 2nd, we were told Tom had very little time left. We assured Tom that we were all going to be ok and when he was ready to go and be with with Jesus. Tom was on a different time table.
On Wednesday, May 5th, daughter Kylisa called to say that grandbaby #9 was going to be delivered by c-section at 3:00. Kemp stayed with his dad and I drove to Evergreen Hospital to share in the birth. Angie was going to drive me but wouldn't have time to make it from work and then all the way to the eastside. I was fine driving but truly deserved a couple of tickets for going faster than the law allows and using the carpool lane as a single driver--I decided that tickets were going to be worth it if caught! Samson Christopher Howard arrived at 3:15. I held him in the delivery room while daddy Chris attended to Kylisa. What a privilege and a joy to share in his birth--at the same time as sharing in Tom's going home.
Then it was good to be back with Tom. Each time I left the house it was like a strong bungee cord pulling me back. Kemp was with me from Thursday the 28th, sharing in caring for Tom--taking shifts over night when we were giving meds every 2 hours. He had such strong words of encouragement for his dad--assuring him that he was there and taking care of the situation. One morning I woke up and realized that when Tom died Kemp would be the oldest Lundstedt male and actually wondered if he had thought about that (dah!) We talked and Kemp said that his dad had been preparing him for years, that they had talked about it at length.
On Thursday, May 6th, again the nurse said she could not believe how strong Tom was and how he could hold like he was. Was there unfinished business that could be holding him? We had talked everything through many times. Tom had been ready for heaven for a long time and had assuured me he was at peace.
On Friday, May 7th, Dori came over to sit with me. We talked about going for a walk to get outside for a little while but I didn't think my legs would carry me very far. I said what I would really like is a pedicure so we decided to go to a nail salon close to the house. It seemed like a relaxing thing to do but relaxing was not what I experienced. As we sat there all I could think about was what if Tom dies while I'm having a pedicure--later that was funny but not at the moment. I'm thankful he waited.
Friday evening a new nurse came to visit. She looked at the situation with new eyes and saw something that helped make it all make sense. When Tom started to shut down his body was getting full nutrition because of his feeding tube. Someone without a feeding tube will begin to wean themself off food and water. That process can take a couple of weeks. I was able to feel at peace with the process and know that when God and Tom were ready they would let us know. Meanwhile we would just do the very best we could for Tom. On Saturday his beard was shaggy AGAIN and i knew that it would bother him so I gave him another shave. I think he was smiling.
A dear friend, Karen, flew in for the weekend--what a gift.
Sunday, May 9th was Mother's Day. Kylisa and Chris brought Samson over to introduce him to his Far.
Monday morning I washed Tom's face and arms. I told him I was going to shower and would be back soon. When I returned I rubbed his chest as I was in the habit of doing but this time there was no heartbeat. Tom was at peace.
We had planned to have a nurse come and help us wash his body and dress him but when it happened I asked Kemp if he thought he could help me and he said yes. I remember so many stories in the Bible about how the women cared for the body of the one who had died and thought it was such a beautiful gift to give. Kemp did help me and we washed Tom and dressed him in his favorite blue shirt, slacks and slippers--he always like slippers more than shoes. Just don't ask him to go barefoot! I told him that I knew he really wasn't there anymore but this was the body I had loved and cared for for 41 years--it was my final gift to him and I'm glad we had that experience.
When the men came to take Tom's body they gave a business card to Kemp. I didn't want to watch them take him so Kemp, Yura and Mark sat with me until they were gone. I did hear them say as they left that they would be very gentle with him. Tears were flowing until Kemp said to look at the business card--the guy's name was Aaron GODWIN! We burst into laughter--God DOES win!
I had made arrangements for a church for Tom's memorial service the week of the 3rd. Jokes were going around that Tom never wanted to miss a good party and that is why he was holding on! I just knew that I didn't want to have to think about it knowing that our church was too small. It turned out that Northshore had ONE date available within a 3 week time span--May 17th. Interesting dates--Tom died on the 10th (my birthday is Jan 10) and the service was on the 17th (Tom's birthday is Jan 17). God knows I'm not great with numbers--I think He's just making it easier on me!
Planning and preparing for Tom's service was amazing--he really dictated what it was. Five components had to be included--hugs, laughter, dance, coffee AND his love for Jesus. Tom has long been known as the Man Who Loves to Hug! When Pastor Mike asked at the beginning of the service for all who had received a hug from Tom to please stand it was almost the entire room of people. You can't be around Tom long before laughing--I've always said that he made me laugh every day. Hearing the Tom stories and watching Tom's life in pictures brought many laughs. Two young ladies from our church family performed a beautiful dance in honor of Tom's love of dance. Coffee was served from silver coffee service along with Scandinavian sweets including Swedish wedding cake like the one we had at our wedding. Tom's love for Jesus shone throughout the service as different ones shared stories from life with him.
The whole celebration of Tom's life was just that--a beautiful celebration of a great man who loved people and loved live--he lived it to the fullest.
Today is the first day I have really been by myself. i woke up not knowing how to face it--what do I do when I have nothing I have to do? Writing has helped. My tears are abated for the moment and I can let go of these thoughts I've wanted to record. God's faithfulness continues to be my rock and heaven is more real and closer than ever before knowing that the one I love best is there. I will see him again one day.
Oh, that's what I forgot to share--on Sunday morning (May 16th) about 3:00 am I was laying in bed awake and thinking about the service on Monday. I saw myself start to walk to the back of the church at the end of the service to greet guests. My brothers were with me and then there was Tom at my side taking my elbow the way he always did. I tried to tell him that he wasn't really there but he just kept walking with me. He had the biggest smile on his face and was doing his Tom-jig as we went. The picture still makes me smile and feel warm inside. I believe God let me see him to let me know that he really is in his new body but with his same charming personality shining through, at peace and full of joy. Man, I love that man and always will. For a while I will miss him.
I need to go back to get down on paper what turned out to be Tom's last two weeks. The last year has been such a waiting game--knowing that at some point there would be a turn for the worse but when it happened it felt like such a surprise. April 28th pneumonia was back but this time it was different. Tom was not tolerating food and couldn't take the antibiotics without it. April 29-30 his breathing was very difficult and we used narcotics to help ease it but that also meant that Tom was heavily sedated. I knew that was what he wanted but it was still hard not to be able to talk to him again, to stop fighting against the infection and start letting go. Everything in me wanted to bring him back but then I saw how he was struggling and how could I want to bring him back only to go through this all over again?
Friends and family began coming to visit and to say goodbye. It was a like a beautifully choreographed dance with very little overlap between people. It was important to share this time with anyone who wanted to be a part of Tom's passing. Precious tears, prayers and memories filled the visits. People from our church brought though I confess it's a blur what we ate. What tender care we were wrapped in.
On Sunday, May 2nd, we were told Tom had very little time left. We assured Tom that we were all going to be ok and when he was ready to go and be with with Jesus. Tom was on a different time table.
On Wednesday, May 5th, daughter Kylisa called to say that grandbaby #9 was going to be delivered by c-section at 3:00. Kemp stayed with his dad and I drove to Evergreen Hospital to share in the birth. Angie was going to drive me but wouldn't have time to make it from work and then all the way to the eastside. I was fine driving but truly deserved a couple of tickets for going faster than the law allows and using the carpool lane as a single driver--I decided that tickets were going to be worth it if caught! Samson Christopher Howard arrived at 3:15. I held him in the delivery room while daddy Chris attended to Kylisa. What a privilege and a joy to share in his birth--at the same time as sharing in Tom's going home.
Then it was good to be back with Tom. Each time I left the house it was like a strong bungee cord pulling me back. Kemp was with me from Thursday the 28th, sharing in caring for Tom--taking shifts over night when we were giving meds every 2 hours. He had such strong words of encouragement for his dad--assuring him that he was there and taking care of the situation. One morning I woke up and realized that when Tom died Kemp would be the oldest Lundstedt male and actually wondered if he had thought about that (dah!) We talked and Kemp said that his dad had been preparing him for years, that they had talked about it at length.
On Thursday, May 6th, again the nurse said she could not believe how strong Tom was and how he could hold like he was. Was there unfinished business that could be holding him? We had talked everything through many times. Tom had been ready for heaven for a long time and had assuured me he was at peace.
On Friday, May 7th, Dori came over to sit with me. We talked about going for a walk to get outside for a little while but I didn't think my legs would carry me very far. I said what I would really like is a pedicure so we decided to go to a nail salon close to the house. It seemed like a relaxing thing to do but relaxing was not what I experienced. As we sat there all I could think about was what if Tom dies while I'm having a pedicure--later that was funny but not at the moment. I'm thankful he waited.
Friday evening a new nurse came to visit. She looked at the situation with new eyes and saw something that helped make it all make sense. When Tom started to shut down his body was getting full nutrition because of his feeding tube. Someone without a feeding tube will begin to wean themself off food and water. That process can take a couple of weeks. I was able to feel at peace with the process and know that when God and Tom were ready they would let us know. Meanwhile we would just do the very best we could for Tom. On Saturday his beard was shaggy AGAIN and i knew that it would bother him so I gave him another shave. I think he was smiling.
A dear friend, Karen, flew in for the weekend--what a gift.
Sunday, May 9th was Mother's Day. Kylisa and Chris brought Samson over to introduce him to his Far.
Monday morning I washed Tom's face and arms. I told him I was going to shower and would be back soon. When I returned I rubbed his chest as I was in the habit of doing but this time there was no heartbeat. Tom was at peace.
We had planned to have a nurse come and help us wash his body and dress him but when it happened I asked Kemp if he thought he could help me and he said yes. I remember so many stories in the Bible about how the women cared for the body of the one who had died and thought it was such a beautiful gift to give. Kemp did help me and we washed Tom and dressed him in his favorite blue shirt, slacks and slippers--he always like slippers more than shoes. Just don't ask him to go barefoot! I told him that I knew he really wasn't there anymore but this was the body I had loved and cared for for 41 years--it was my final gift to him and I'm glad we had that experience.
When the men came to take Tom's body they gave a business card to Kemp. I didn't want to watch them take him so Kemp, Yura and Mark sat with me until they were gone. I did hear them say as they left that they would be very gentle with him. Tears were flowing until Kemp said to look at the business card--the guy's name was Aaron GODWIN! We burst into laughter--God DOES win!
I had made arrangements for a church for Tom's memorial service the week of the 3rd. Jokes were going around that Tom never wanted to miss a good party and that is why he was holding on! I just knew that I didn't want to have to think about it knowing that our church was too small. It turned out that Northshore had ONE date available within a 3 week time span--May 17th. Interesting dates--Tom died on the 10th (my birthday is Jan 10) and the service was on the 17th (Tom's birthday is Jan 17). God knows I'm not great with numbers--I think He's just making it easier on me!
Planning and preparing for Tom's service was amazing--he really dictated what it was. Five components had to be included--hugs, laughter, dance, coffee AND his love for Jesus. Tom has long been known as the Man Who Loves to Hug! When Pastor Mike asked at the beginning of the service for all who had received a hug from Tom to please stand it was almost the entire room of people. You can't be around Tom long before laughing--I've always said that he made me laugh every day. Hearing the Tom stories and watching Tom's life in pictures brought many laughs. Two young ladies from our church family performed a beautiful dance in honor of Tom's love of dance. Coffee was served from silver coffee service along with Scandinavian sweets including Swedish wedding cake like the one we had at our wedding. Tom's love for Jesus shone throughout the service as different ones shared stories from life with him.
The whole celebration of Tom's life was just that--a beautiful celebration of a great man who loved people and loved live--he lived it to the fullest.
Today is the first day I have really been by myself. i woke up not knowing how to face it--what do I do when I have nothing I have to do? Writing has helped. My tears are abated for the moment and I can let go of these thoughts I've wanted to record. God's faithfulness continues to be my rock and heaven is more real and closer than ever before knowing that the one I love best is there. I will see him again one day.
Oh, that's what I forgot to share--on Sunday morning (May 16th) about 3:00 am I was laying in bed awake and thinking about the service on Monday. I saw myself start to walk to the back of the church at the end of the service to greet guests. My brothers were with me and then there was Tom at my side taking my elbow the way he always did. I tried to tell him that he wasn't really there but he just kept walking with me. He had the biggest smile on his face and was doing his Tom-jig as we went. The picture still makes me smile and feel warm inside. I believe God let me see him to let me know that he really is in his new body but with his same charming personality shining through, at peace and full of joy. Man, I love that man and always will. For a while I will miss him.
Friday, April 30, 2010
Today
We've known this day was coming but it's still a surprise. Tom is dying. He is very sedated to help him breathe easier. Yesterday he came very alert as different ones came to visit. There were definitely sparks of Tom shining out. Last night I layed down beside him about 8:30 and we listened to our children laughing together in the next room. Made us smile and brought back lots of good memories.
Several verses have been very close to us and I've been reciting them over and over with Tom. Prov 3:5-6, John 3:16, 1 Cor 10:13, John 14:1-4, Psalm 100
Thank you to all who are praying for us.
Several verses have been very close to us and I've been reciting them over and over with Tom. Prov 3:5-6, John 3:16, 1 Cor 10:13, John 14:1-4, Psalm 100
Thank you to all who are praying for us.
Sunday, April 18, 2010
Still learning more
It's Sunday morning. Tom developed pnemonia last Monday and had a high fever but we got antibiotics into him quickly and he is much better. The problem with ALS is that the diaphram muscles that help with breathing are weakened so it gets harder to cough. That meant that I had to get on the fast track for being profficient at suctioning. Tom has been very tired all week--understandably so. Last night he thought he wanted to go to church this morning but when it was time to get ready he just wanted to go back to bed. It's hard not to go for both of us because not only do we enjoy the worship but also enjoy connecting with good friends who have become family to us. Many of them are the prayer warriors who keep us going with their prayers and encouragement.
Here are some "what I'm learning" thoughts--
Not sidelined! (Or "sidewalked". Grandson Moose (3) enjoys giving us the assinment of being his coach--like his big brother's lacrosse coach. But when you are a coach you have to stand (no sit) on the "sidewalk"!) As Tom's disease has progressed I have had the feeling of being sidelined in life. Real life was what we left behind or so I thought. I am realizing how much we are in life right now and how much we can learn from this time and place in life. I never knew how full life can be without getting in your car every day or having meetings or appointments to go to. In terms of space our life has been reduced greatly but in terms of fullness it's been expanded. What I notice the most is how much more I enjoy the "little" things in life--smiles are amazing gifts we give, hugs are vital, and being "in the moment" is a treasured way to live.
Why are we kind? Often it's because we know it's the right thing to do. Sometimes it's out of sheer obedience to God when it's not what we really want to do. I've been thinking alot about kindness lately. I remember years ago when I visited a friend in the hospital. Someone called me a very kind person as a result but inside I knew that I was doing it because it was the right thing to do and struggled with the conflict of right actions/not so good attitude. Taking care of Tom has given me lots of practice with kindness. I love taking care of him but sometimes when he rings for me inside I just want to say, "can you just wait while I finish eating/working in the garden/sewing/etc." Then it hit me. Pastor Mike recently talked about our purpose in life was to give ourselves away. (Following the example of Christ who gave His life for us--everything He had.) I realized that when I don't want to/feel like being kind it's because it interrupts the plans I have for that particular moment. It's all about me! I've prayed for a long time that the inside feelings would match with the outside actions--that I would feel real or genuine in my actions because they matched what I was feeling/thinking inside. And then it happened. Tom asked and my response was "it's all about him" and he needs me and this is my chance to give myself away for him. What happened next was a surprise. I experienced the most euphoric sense of joy--it was real, it was genuine and it was addicting. I couldn't wait for it to happen again. And the sense of joy has not gone away. I think this must be the fruit of the Spirit that the Bible talks about. We can practice love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control and know that that is a good thing. Then they become a part of us and they blossom inside and are real (and addicting!) (A very quick synopsis of a long teaching!)
"Simplify!" More? That's what I heard and that was my response. I didn't know how until one day when Tom, grandson Moose and dog Mochi all needed me at the same time. And I didn't have the energy to meet all their needs OR the mental ability to figure out how to get it all taken care of--such simple tasks in the past. The answer was for Mochi's other mother to care for him for the time being. What would we do without friends and family? I'm thankful I don't have to find out.
Here are some "what I'm learning" thoughts--
Not sidelined! (Or "sidewalked". Grandson Moose (3) enjoys giving us the assinment of being his coach--like his big brother's lacrosse coach. But when you are a coach you have to stand (no sit) on the "sidewalk"!) As Tom's disease has progressed I have had the feeling of being sidelined in life. Real life was what we left behind or so I thought. I am realizing how much we are in life right now and how much we can learn from this time and place in life. I never knew how full life can be without getting in your car every day or having meetings or appointments to go to. In terms of space our life has been reduced greatly but in terms of fullness it's been expanded. What I notice the most is how much more I enjoy the "little" things in life--smiles are amazing gifts we give, hugs are vital, and being "in the moment" is a treasured way to live.
Why are we kind? Often it's because we know it's the right thing to do. Sometimes it's out of sheer obedience to God when it's not what we really want to do. I've been thinking alot about kindness lately. I remember years ago when I visited a friend in the hospital. Someone called me a very kind person as a result but inside I knew that I was doing it because it was the right thing to do and struggled with the conflict of right actions/not so good attitude. Taking care of Tom has given me lots of practice with kindness. I love taking care of him but sometimes when he rings for me inside I just want to say, "can you just wait while I finish eating/working in the garden/sewing/etc." Then it hit me. Pastor Mike recently talked about our purpose in life was to give ourselves away. (Following the example of Christ who gave His life for us--everything He had.) I realized that when I don't want to/feel like being kind it's because it interrupts the plans I have for that particular moment. It's all about me! I've prayed for a long time that the inside feelings would match with the outside actions--that I would feel real or genuine in my actions because they matched what I was feeling/thinking inside. And then it happened. Tom asked and my response was "it's all about him" and he needs me and this is my chance to give myself away for him. What happened next was a surprise. I experienced the most euphoric sense of joy--it was real, it was genuine and it was addicting. I couldn't wait for it to happen again. And the sense of joy has not gone away. I think this must be the fruit of the Spirit that the Bible talks about. We can practice love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control and know that that is a good thing. Then they become a part of us and they blossom inside and are real (and addicting!) (A very quick synopsis of a long teaching!)
"Simplify!" More? That's what I heard and that was my response. I didn't know how until one day when Tom, grandson Moose and dog Mochi all needed me at the same time. And I didn't have the energy to meet all their needs OR the mental ability to figure out how to get it all taken care of--such simple tasks in the past. The answer was for Mochi's other mother to care for him for the time being. What would we do without friends and family? I'm thankful I don't have to find out.
Friday, March 19, 2010
Friday, March 19
What a beautiful day today. Don't know what the temperature was but it was warm enough to work in the yard in a t-shirt. The sun felt so good. It felt good to dig in the dirt and get ready for summer. We got walkie-talkies so I can be outside and Tom can still call me easily.
We're on another plateau--we know how to deal with what's going on, no crisis, and Tom is feeling pretty good. One of the clearest ways I can know that is when I see his smile and it's been showing up more often this week. Oh, he's still dealing with alot but none of it is unfamiliar so it doesn't seem as bad as when it first showed up.
We continue to be so very grateful for Hospice--they are making it possible for me to continue to care for Tom--don't know what we'd do without our wonderful team.
In my last post I wrote that I am loosing my protector. I was wrong. I can never loose the One who is my Savior and Lord. He has given me my father and my husband--two amazing men--and for that I so very grateful. They have been wonderful gifts here on earth but ultimately all earthly things will pass away but our relationship with Jesus Christ will last for all eternity.
I am reading two excellent books. "Nobody Tells a Dying Guy to Shutup" is Dave Chilcoat's journal which was begun the day he was diagnosed with ALS. He has a wonderful sense of humor and a compelling honesty. He's helping me understand the disease from a different perspective. I highly recommend it. The other book is written by Ken Huterson who is battling cancer. It's called "Hope is Contagious." I'm not very far into it but Ken has a gift for honest sharing, too, and I look forward to reading it.
We're on another plateau--we know how to deal with what's going on, no crisis, and Tom is feeling pretty good. One of the clearest ways I can know that is when I see his smile and it's been showing up more often this week. Oh, he's still dealing with alot but none of it is unfamiliar so it doesn't seem as bad as when it first showed up.
We continue to be so very grateful for Hospice--they are making it possible for me to continue to care for Tom--don't know what we'd do without our wonderful team.
In my last post I wrote that I am loosing my protector. I was wrong. I can never loose the One who is my Savior and Lord. He has given me my father and my husband--two amazing men--and for that I so very grateful. They have been wonderful gifts here on earth but ultimately all earthly things will pass away but our relationship with Jesus Christ will last for all eternity.
I am reading two excellent books. "Nobody Tells a Dying Guy to Shutup" is Dave Chilcoat's journal which was begun the day he was diagnosed with ALS. He has a wonderful sense of humor and a compelling honesty. He's helping me understand the disease from a different perspective. I highly recommend it. The other book is written by Ken Huterson who is battling cancer. It's called "Hope is Contagious." I'm not very far into it but Ken has a gift for honest sharing, too, and I look forward to reading it.
Saturday, February 27, 2010
A month latert
Another month has gone by. The biggest challenges have been infection and bleeding in Tom's trach. This week we saw the doctor who perfomed the surgery. He checked everything out and said it's not unusual for it to take several months for the body to heal. Today (Saturday) Tom is doing MUCH better--infection gone and not sign of bleeding! YEAH! Many have prayed and we are very thankful.
There have been some deep valleys this month. I had a horrible dream that I was being chased by someone. I was very frightened because knew I couldn't outrun him. He finally caught me and had a very scary face--that's when I woke up. I couldn't get the dream out of my mind and felt it had some meaning but didn't know what. (I needed Vanessa to interpret it!) Then it came to me--I am loosing my protector and there's a feeling of vulnerability. Two men in my life have given me so much security--my father and my husband. Hadn't consciouslythought of it until that dream. I've also been reminded that when the tears start and feel like they will never end that they actually do end and good days come again.
Today Kemp spent the day with Tom while I had a day out with girlfriends. We enjoyed painting ceramics and then eating together. The laughter was the best. It felt so good--can't wait to do it again. It's hard to leave Tom but I know it's important to stay healthy and spending times with good friends is very healing.
Hard to believe it's been a whole year since Tom was first diagnosed.
There have been some deep valleys this month. I had a horrible dream that I was being chased by someone. I was very frightened because knew I couldn't outrun him. He finally caught me and had a very scary face--that's when I woke up. I couldn't get the dream out of my mind and felt it had some meaning but didn't know what. (I needed Vanessa to interpret it!) Then it came to me--I am loosing my protector and there's a feeling of vulnerability. Two men in my life have given me so much security--my father and my husband. Hadn't consciouslythought of it until that dream. I've also been reminded that when the tears start and feel like they will never end that they actually do end and good days come again.
Today Kemp spent the day with Tom while I had a day out with girlfriends. We enjoyed painting ceramics and then eating together. The laughter was the best. It felt so good--can't wait to do it again. It's hard to leave Tom but I know it's important to stay healthy and spending times with good friends is very healing.
Hard to believe it's been a whole year since Tom was first diagnosed.
Monday, February 8, 2010
Rambling thoughts
Tom had another round of botox injections on Tuesday. The doctor had some interesting things to say about some of the research he has done into ALS about the relationship between the patient and caregiver/spouse. I realize that Tom and I have something very special that isn't necessarily the norm--but there is a very special intimacy in caring for someone and them allowing the care to be given. We're all so different but we are finding what works for us.
Chaplain Steve visited Friday morning. He gives the gift of listening! We found out that we had all been to some of the same places in Australia years ago. He was a part of the Uniting Church in Australia which is the denomination we attended while living there for a year.
Friday night Tom fell in the bathroom, hit his head and had and had a small cut on it. I heard the fall out of a dead sleep and went running. I've asked him to tell me when he needs to get up but he doesn't always do it.
Saturday was our ALS support group. Kemp went with us. He enjoys bringing humor to the group and talking with everyone. When I told the group that I had given Tom his first haircut this week Kemp took off Tom's hat to show everyone that they probably don't want me to tackle their heads--there was the big bandaid I put on from the night before's accident. I didn't realize that the bandaid I had chosen was quite as big as it was OR that it was made to look like DUCT TAPE! In the middle of the night I just wanted to cover up the blood. We all got a good laugh.
Later in the day Tom wasn't himself and I was getting concerned that he had either had another stroke or had a concussion from the fall. I called hospice to send a nurse--what a great benefit having them! The nurse thought Tom was okay but suggested I watch him every couple of hours during the night and report any change. We were awake alot--saw every hour except 5 so needless to say by the time it was time to get up to feed Tom at 7:30 we were both pretty tired. We regretted not having the energy to make it to church--we miss seeing everyone and having a chance to worship together. We slept off and on all day to catch up. I have begun to read again--just couldn't do it for a while--so am enjoying having time to just sit and get engrossed in a good book. Sunday night we slept good again.
Monday--our social worker stopped by to see how we are doing. We enjoy her visits. She has arranged for Tom to have a massage therapist come and visit. (I asked if I could have one, too, but the answer was "no"!) She also has arranged for a handicap parking card--all these things that are so helpful and we don't have to figure it out. Quite a gift. After lunch I went to Curves for the first time (a new insurance benefit)--going to work on regaining strength and stamina. Then Tom went with me while I ran a couple of errand,s--it felt good to get outside. Then I went to meet a friend for dinner and we talked nonstop for 2 hours--boy, did that feel good. Now I am home, Tom is settled in for the night and I am going to catch up on the ironing--Tom is enjoying wearing flannel shirts--I am enjoying keeping them ironed and fresh.
Latest lessons--Recently when I thought what I was feeling was lonliness I found was more grieving--this time over life as we have known it in the past--full of people and activities. It was another hurdle to get over and find that where we are now is more like a hermitage for Tom and me. Our lives are full but in a different way--slower paced but still very full just taking care of daily needs.
Another lesson--in the middle of the night I was thinking about the 23rd Psalm--a place of great comfort and instruction. The Lord is my shepherd (Lord, shepherd me, shepherd us). I shall not want (a place of perfect contentment). He makes me lie down in green pasture (a place where all physical needs are met--food, comfort, beauty, rest) He leads me beside still waters. (not stormy, wind swept waves but still waters--a place of emotional peace). He restores my soul. (Spiritually He just keeps bringing me back to Himself with the reassurance He will never leave or forsake us.) And with that I went to sleep feeling like God had given me new thoughts about something so familiar. What a great God we serve.
Chaplain Steve visited Friday morning. He gives the gift of listening! We found out that we had all been to some of the same places in Australia years ago. He was a part of the Uniting Church in Australia which is the denomination we attended while living there for a year.
Friday night Tom fell in the bathroom, hit his head and had and had a small cut on it. I heard the fall out of a dead sleep and went running. I've asked him to tell me when he needs to get up but he doesn't always do it.
Saturday was our ALS support group. Kemp went with us. He enjoys bringing humor to the group and talking with everyone. When I told the group that I had given Tom his first haircut this week Kemp took off Tom's hat to show everyone that they probably don't want me to tackle their heads--there was the big bandaid I put on from the night before's accident. I didn't realize that the bandaid I had chosen was quite as big as it was OR that it was made to look like DUCT TAPE! In the middle of the night I just wanted to cover up the blood. We all got a good laugh.
Later in the day Tom wasn't himself and I was getting concerned that he had either had another stroke or had a concussion from the fall. I called hospice to send a nurse--what a great benefit having them! The nurse thought Tom was okay but suggested I watch him every couple of hours during the night and report any change. We were awake alot--saw every hour except 5 so needless to say by the time it was time to get up to feed Tom at 7:30 we were both pretty tired. We regretted not having the energy to make it to church--we miss seeing everyone and having a chance to worship together. We slept off and on all day to catch up. I have begun to read again--just couldn't do it for a while--so am enjoying having time to just sit and get engrossed in a good book. Sunday night we slept good again.
Monday--our social worker stopped by to see how we are doing. We enjoy her visits. She has arranged for Tom to have a massage therapist come and visit. (I asked if I could have one, too, but the answer was "no"!) She also has arranged for a handicap parking card--all these things that are so helpful and we don't have to figure it out. Quite a gift. After lunch I went to Curves for the first time (a new insurance benefit)--going to work on regaining strength and stamina. Then Tom went with me while I ran a couple of errand,s--it felt good to get outside. Then I went to meet a friend for dinner and we talked nonstop for 2 hours--boy, did that feel good. Now I am home, Tom is settled in for the night and I am going to catch up on the ironing--Tom is enjoying wearing flannel shirts--I am enjoying keeping them ironed and fresh.
Latest lessons--Recently when I thought what I was feeling was lonliness I found was more grieving--this time over life as we have known it in the past--full of people and activities. It was another hurdle to get over and find that where we are now is more like a hermitage for Tom and me. Our lives are full but in a different way--slower paced but still very full just taking care of daily needs.
Another lesson--in the middle of the night I was thinking about the 23rd Psalm--a place of great comfort and instruction. The Lord is my shepherd (Lord, shepherd me, shepherd us). I shall not want (a place of perfect contentment). He makes me lie down in green pasture (a place where all physical needs are met--food, comfort, beauty, rest) He leads me beside still waters. (not stormy, wind swept waves but still waters--a place of emotional peace). He restores my soul. (Spiritually He just keeps bringing me back to Himself with the reassurance He will never leave or forsake us.) And with that I went to sleep feeling like God had given me new thoughts about something so familiar. What a great God we serve.
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