How different this Tuesday from last Tuesday. Last Monday evening I began a support group called Grief Share. My plan was to go and listen to the video, listen politely to what others had to share and then go home--in other words, not to really involve myself. Even while filling out paper work at the beginning I did not speak to the woman sitting next to me. I really had a wall around me and pretended to be invisible. Well, God had other plans. The table facilitator was too good at drawing us out. Tears flowed. Lives were opened and shared pain understood. When I left I cried all the way home. The next day I felt so down and sad. It felt like I had taken 3 steps back yet intellectually I knew I had to go back in order to go forward. All week I had this sense that I was outside myself looking at me, analyzing what I was feeling. Feeling and thinking about the feeling all at the same time. Feelings magnified--highs higher and lows lower.
Yesterday was Monday and all day I felt lousy--headache, stomache ache, tired--plenty of excuse to not go back last night. But I knew I had to go, not just for me but for the others I had met last week. It was painful to drive to Northshore. I decided maybe my stomach would feel better if I ate something so I stopped and got a bowl of soup which I ate in the car in the parking lot. I just knew I was going to spill some on the front of me AND I DID. Now I had another excuse not to go. But somehow I did go. Met the wonderful facilitator from last week walking in and shared how hard it was to come. She was very encouraging and her hug helped. The video was again very informative and assuring--talked about grief being like being on a roller coaster with many of the same physical affects--disorientation, fear, nausea, up and down, etc. New people were at our table this week--would I risk sharing? Interesting thing happened--when I listened to others sharing it broke down all the walls and I found myself sharing without reserve, mindless of the tears, knowing we were all in this thing called grief together.
I brought Tom's quilt to share and boy, did it open doors. I am already making 2 quilts for a friend who lost his wife. Last night two women asked if I would teach them how to make one out of their husband's clothing and a man asked if I would make one for him. I think I have a new mission and I am thrilled. I know how much Tom's quilt means to me and to be able to give that gift to others makes me so happy. I'm also finding it very healing. And to think this all started because I ordered a how-to video for my granddaughter for her to learn how to quilt not knowing it was really for me!
This morning I woke with the words of a praise song running through my mind--and my mind is so like a sieve that the words have come and gone in such a short time! I just know that it was with joy that I woke this morning--seeing God's hand in the midst of this roller coaster ride. (Never did like real roller coasters and avoided them.) Can't avoid this one. This morning I will enjoy the fact that I am up and trust that He will hold me close when I go down.
Tuesday, September 28, 2010
Thursday, August 12, 2010
Now is not forever
I went camping with dear, close friends last weekend. Tom and I had camped with them multiple times in the past. This trip had been planned since early in the year, purposely staying close to home/doctors for the sake of Tom. It turned out our friend Dale is the one who needed to stay close. I had planned to take the RV but weeks prior to going my friends had talked it over and thought it would be too hard for me and invited me to stay in their RV with them. I had been having the same thoughts and was grateful for their invitation. It was so hard to be there without Tom BUT I don't want to give up being with this special group of people. It's hard and it's wonderful all at the same time. It's feels so special to be with people who knew and loved Tom, to talk about him as only people who shared his life can, to remember as only people who were there can. I just got an email from someone who said she thought I should find new friends who were not part of my time with Tom so it wouldn't hurt so much. She is sooooo wrong. How could I talk about Tom with people who didn't know him? Maybe it hurts more but I think it's going to hurt no matter what so why not be with people who shared Tom's and my life and continue to care. I don't want to stop talking about him or thinking about him and I think that's where good friends come in. I treasure them more than ever.
It has been 3 months since Tom died--it's August 10. The day felt magnified somehow. Tears were close to the surface from the time I woke up. I took Moose and went to Kylisa's thinking that being with all the little grandboys would help. But nothing could stop the tears. I knew I needed to get away to be by myself and let go. The tears come whether people are around or not but there's a deep feeling of just needing to let go and not be contained that's harder when others are around. It feels like it needs to be private. Didn't know where to go so spent some time driving and ended up in a park where I could just sit in my car and cry as much as my body had need of crying. My greatest fear was that it wouldn't stop and crying would now be the way I was going to live--forever.
After talking it over with my children I decided I wanted to go away for a few days. Found a cottage that was available, packed a few things and left the next morning. Stopped to get the mail on the way out of town and found two special gifts waiting for me. One was a card from a friend with this on the front: "The Lord knows the pain you feel, the grief you carry, the tears you cry, the memories you'll cherish, the comfort you need, the strength you'll require." That would have been wonderful encouragement to read any day but it was extra special to get it when I did.
The other gift was Book 2 (of 4) of a series called "Experiencing Grief." The first book had been such a help that I couldn't wait to see what this one had to say. I had identified with so much the first book had said--"it" understood. This book was the same. At the park I kept seeing people who were playing and walking and talking--LIKE EVERYTHING WAS NORMAL! But nothing feels normal. Tom is gone and nothing is the same. On the first page of the book, the author said the same thing! He even said he got into his car and cried. I'm like others--it sometimes takes a few months for the reality to sink in. It feels heavy like walking through mud and a deep fog all at the same time. The book says this isn't all bad--"because it means that you are feeling." But feeling HURTS! How long will it hurt so much? The book says experiencing feelings is one step toward healing--how many steps are there?
The first 3 months have been a piece of cake compared with this. I even wondered if I was through grieving! Wishful (dumb) thinking? "Half the battle is just accepting the grief and letting yourself grieve." "Simply move with it and let it take you where it wants to go." Boy, does that sound like out of control living--and scary. Don't know when it's going to mug me, how I will react. The verse comes to mind that took Tom and me through out last year together--"Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths." I've learning to trust Him with my circumstances. Trusting Him with my emotions is something new--it's a new letting go. The book says, "When you let your feelings out--feel them to the full--they lose their power over you." Isn't that just like God to create in us feelings and then mean for them to be felt! AHHH! This is going to be a hard lesson to learn. I pray I learn it quickly.
One thing that was comforting in this new book was this quote: "It's very normal to experience lapses of memory, difficulty concentrating, a slow response time, or absent-mindedness"--maybe I'm not developing dementia!
One chapter heading is called, "A Good Cry." "Weeping is perhaps the most humand most universal of all relief measures." Too bad your eyes burn and head throbs when you are through. "Each good cry lets a little more of the pain out of your system." OK, if it helps with the pain then bring it on. I don't want to hurt but at the same time the hurt feels good in a way because it tells me, no, it shows me how much I loved Tom, how dear and precious he was/is to me, how much I miss him. Memories are more precious than ever and everything I see brings a memory of life with Tom.
I always wanted to be an old couple with Tom. I love seeing old people walking hand in hand or sitting close and think it is a beautiful thing to see. Now it hurts but at the same time makes me so thankful again and again for 41 years with him. 41 years of memories. 41 years of love--in love and loved. Now is not forever--I will keep reminding myself. If the tears come I will try not to fight them. If I need to cry deep and hard my car is a safe place.
It has been 3 months since Tom died--it's August 10. The day felt magnified somehow. Tears were close to the surface from the time I woke up. I took Moose and went to Kylisa's thinking that being with all the little grandboys would help. But nothing could stop the tears. I knew I needed to get away to be by myself and let go. The tears come whether people are around or not but there's a deep feeling of just needing to let go and not be contained that's harder when others are around. It feels like it needs to be private. Didn't know where to go so spent some time driving and ended up in a park where I could just sit in my car and cry as much as my body had need of crying. My greatest fear was that it wouldn't stop and crying would now be the way I was going to live--forever.
After talking it over with my children I decided I wanted to go away for a few days. Found a cottage that was available, packed a few things and left the next morning. Stopped to get the mail on the way out of town and found two special gifts waiting for me. One was a card from a friend with this on the front: "The Lord knows the pain you feel, the grief you carry, the tears you cry, the memories you'll cherish, the comfort you need, the strength you'll require." That would have been wonderful encouragement to read any day but it was extra special to get it when I did.
The other gift was Book 2 (of 4) of a series called "Experiencing Grief." The first book had been such a help that I couldn't wait to see what this one had to say. I had identified with so much the first book had said--"it" understood. This book was the same. At the park I kept seeing people who were playing and walking and talking--LIKE EVERYTHING WAS NORMAL! But nothing feels normal. Tom is gone and nothing is the same. On the first page of the book, the author said the same thing! He even said he got into his car and cried. I'm like others--it sometimes takes a few months for the reality to sink in. It feels heavy like walking through mud and a deep fog all at the same time. The book says this isn't all bad--"because it means that you are feeling." But feeling HURTS! How long will it hurt so much? The book says experiencing feelings is one step toward healing--how many steps are there?
The first 3 months have been a piece of cake compared with this. I even wondered if I was through grieving! Wishful (dumb) thinking? "Half the battle is just accepting the grief and letting yourself grieve." "Simply move with it and let it take you where it wants to go." Boy, does that sound like out of control living--and scary. Don't know when it's going to mug me, how I will react. The verse comes to mind that took Tom and me through out last year together--"Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths." I've learning to trust Him with my circumstances. Trusting Him with my emotions is something new--it's a new letting go. The book says, "When you let your feelings out--feel them to the full--they lose their power over you." Isn't that just like God to create in us feelings and then mean for them to be felt! AHHH! This is going to be a hard lesson to learn. I pray I learn it quickly.
One thing that was comforting in this new book was this quote: "It's very normal to experience lapses of memory, difficulty concentrating, a slow response time, or absent-mindedness"--maybe I'm not developing dementia!
One chapter heading is called, "A Good Cry." "Weeping is perhaps the most humand most universal of all relief measures." Too bad your eyes burn and head throbs when you are through. "Each good cry lets a little more of the pain out of your system." OK, if it helps with the pain then bring it on. I don't want to hurt but at the same time the hurt feels good in a way because it tells me, no, it shows me how much I loved Tom, how dear and precious he was/is to me, how much I miss him. Memories are more precious than ever and everything I see brings a memory of life with Tom.
I always wanted to be an old couple with Tom. I love seeing old people walking hand in hand or sitting close and think it is a beautiful thing to see. Now it hurts but at the same time makes me so thankful again and again for 41 years with him. 41 years of memories. 41 years of love--in love and loved. Now is not forever--I will keep reminding myself. If the tears come I will try not to fight them. If I need to cry deep and hard my car is a safe place.
Tuesday, July 27, 2010
Things kids say
Art Linkletter used to have a show called, "Kids say the darndest things!" Here are 3 of those "things" spoken today by my grandson Moose:
We were heading into downtown Seattle for a meeting this morning when Moose (Maximus) suggested we take the city bus. I said, "Well, let me figure out how to do that." (Meaning that I needed to look up a schedule on the computer.) Moose's response was, "I know how. We walk to the bus stop. The bus comes and we get on."
When my meeting ended Moose said he was hungry and asked if we could go to "an eating store."
When we got to the bus stop for our return trip I stopped to wait a little ways away from the post with the bus schedule on it. Moose asked where the bus stop was and I said, "Right here." He said, "This isn't the bus stop. This is a tree!" (Yes, I had stopped next to a tree and he knew the difference.)
I love laughter. I love being able to take the time to enjoy the funny things in life. I love it that Tom made both of those things priorities in his life. I can hear him laughing, too.
We were heading into downtown Seattle for a meeting this morning when Moose (Maximus) suggested we take the city bus. I said, "Well, let me figure out how to do that." (Meaning that I needed to look up a schedule on the computer.) Moose's response was, "I know how. We walk to the bus stop. The bus comes and we get on."
When my meeting ended Moose said he was hungry and asked if we could go to "an eating store."
When we got to the bus stop for our return trip I stopped to wait a little ways away from the post with the bus schedule on it. Moose asked where the bus stop was and I said, "Right here." He said, "This isn't the bus stop. This is a tree!" (Yes, I had stopped next to a tree and he knew the difference.)
I love laughter. I love being able to take the time to enjoy the funny things in life. I love it that Tom made both of those things priorities in his life. I can hear him laughing, too.
A week away
(Wrote this while still in Cannon Beach the week of July 12-19 but didn't have internet access so am finally putting it in the blog now)
I am alone sitting in a beautiful home of friends overlooking the beaches of Cannon Beach, Oregon. It is a week to remember--a time to be away, a time to be quiet, a time to think about Tom and all he means to me. And it was a time to quilt.
When we were going through Tom's clothes I had a hard time thinking about parting with them until my daughter April suggested that i make a quilt using some of his shirts. The more I thought about it the more excited I got about the project. Then my friend who is a master quilter agreed to come with me. Now there would be time to quilt AND have a wonderful mentor to teach me. Susan and I have known each other for over 30 years. Yesterday she went home and I am alone and this, too, is good.
Last night I finished putting all the blocks together in Tom's quilt. It is made of his shirts, ties, a pair of shorts, dress slacks and jeans he always wore. The back of the quilt will be the blanket he liked to wrap up in. The whole time sewing it I kept having the thought, "I can't wait to show this to Tom!" He felt so close and I felt so expectant--that I would see him any moment walk through the door. I read in a book on grief that doing creative projects is a good way to process grief.
Little did I know the joy of putting these pieces of fabric together--each piece a familiar sight--shirts that I have ironed for years and enjoyed seeing on Tom. The familiarity of each pattern makes me smile with remembrance. Among the pockets I included is one from a bright Hawaiian shirt. My Dad bought it for Tom years ago. It reminds me of our travels to Hawaii, Mexico and Australia, the special memories of beaches, warmth and water. It's also the last piece on the quilt making me think of Tom in a place of paradise and the assurance that we will be there together some day.
There is also a block that is made from a flannel plaid shirt that Tom wore during the last year. It is dark on dark telling how hard that year was and yet it is a soft fabric with a cross in the center reminding me of the gentle care we received by our Lord through our family, friends, doctors and hospice.
There is a block that is a mistake that I didn't try to fix because it reminds me of the mistakes we make in life and sometimes we can't fix them. Sometimes they are lessons we need to learn and 3 blocks later is the same block but this time it is correct. I am so thankful that God never gives up on us; He never throws us away but always invites us to keep on learning and trusting and growing. His amazing unconditional love wraps us up just like Tom's quilt will.
When it is finished I know i will feel the remembrance of Tom's hugs, of his embrace, of his love. Whan an amazing emotion from a few pieces of fabric sewn together. How thankful I am for the gift of this home and for this week away. This afternoon I will walk the beach. I will be alone but i will not be alone. I will think of Tom and remember 42 years worth of memories--I think i will take a notebook with me to remember what I remember.
Tom is a wonderful example of living life full of joy. I want to be just like Tom--I don't want to miss any of it.
Well, I took that long walk on the beach. I was so aware of walking without Tom at my side and yet there's something about having spent all those years with him--his influence is very much present. It's like I see things through our memories together. Everything I see seems to remind me of some part of our life together. Watching families interact, people playing with their dogs, flying kites, walking hand in hand, people just sitting and enjoying being there. There was much conversation going on but I could hear none of it--the roar of the ocean made everything else be silent. Colers were bright against the gray of the san, sky and water. i enjoyed watching and taking it all in. i ate lunch alone at a restaurant in town and it was ok. I thought of all the times Tom ate alone while he traveled for his job. I never asked him what that felt like--never thought of it until now. I have a feeling he made the best of it--maybe pretending I was with him like i did today thinking about him.
I put the inner binding on the quilt tonight. Now I just have to add the outer border from his jeans and I will be able to finish it. I can't wait to wrap up in my Tom quilt and remember. What a great thing memories are--one of my most treasured possessions.
Just finished watching the DVD from Tom's memorial service--laughed and cried all over again. What a wonderful tribute to a wonderful man who was and is so loved.
Tomorrow I drive home. I miss my children and grandchildren and HUGS! This has been a good time of coming away to think, to pray, to remember and to quilt.
I am alone sitting in a beautiful home of friends overlooking the beaches of Cannon Beach, Oregon. It is a week to remember--a time to be away, a time to be quiet, a time to think about Tom and all he means to me. And it was a time to quilt.
When we were going through Tom's clothes I had a hard time thinking about parting with them until my daughter April suggested that i make a quilt using some of his shirts. The more I thought about it the more excited I got about the project. Then my friend who is a master quilter agreed to come with me. Now there would be time to quilt AND have a wonderful mentor to teach me. Susan and I have known each other for over 30 years. Yesterday she went home and I am alone and this, too, is good.
Last night I finished putting all the blocks together in Tom's quilt. It is made of his shirts, ties, a pair of shorts, dress slacks and jeans he always wore. The back of the quilt will be the blanket he liked to wrap up in. The whole time sewing it I kept having the thought, "I can't wait to show this to Tom!" He felt so close and I felt so expectant--that I would see him any moment walk through the door. I read in a book on grief that doing creative projects is a good way to process grief.
Little did I know the joy of putting these pieces of fabric together--each piece a familiar sight--shirts that I have ironed for years and enjoyed seeing on Tom. The familiarity of each pattern makes me smile with remembrance. Among the pockets I included is one from a bright Hawaiian shirt. My Dad bought it for Tom years ago. It reminds me of our travels to Hawaii, Mexico and Australia, the special memories of beaches, warmth and water. It's also the last piece on the quilt making me think of Tom in a place of paradise and the assurance that we will be there together some day.
There is also a block that is made from a flannel plaid shirt that Tom wore during the last year. It is dark on dark telling how hard that year was and yet it is a soft fabric with a cross in the center reminding me of the gentle care we received by our Lord through our family, friends, doctors and hospice.
There is a block that is a mistake that I didn't try to fix because it reminds me of the mistakes we make in life and sometimes we can't fix them. Sometimes they are lessons we need to learn and 3 blocks later is the same block but this time it is correct. I am so thankful that God never gives up on us; He never throws us away but always invites us to keep on learning and trusting and growing. His amazing unconditional love wraps us up just like Tom's quilt will.
When it is finished I know i will feel the remembrance of Tom's hugs, of his embrace, of his love. Whan an amazing emotion from a few pieces of fabric sewn together. How thankful I am for the gift of this home and for this week away. This afternoon I will walk the beach. I will be alone but i will not be alone. I will think of Tom and remember 42 years worth of memories--I think i will take a notebook with me to remember what I remember.
Tom is a wonderful example of living life full of joy. I want to be just like Tom--I don't want to miss any of it.
Well, I took that long walk on the beach. I was so aware of walking without Tom at my side and yet there's something about having spent all those years with him--his influence is very much present. It's like I see things through our memories together. Everything I see seems to remind me of some part of our life together. Watching families interact, people playing with their dogs, flying kites, walking hand in hand, people just sitting and enjoying being there. There was much conversation going on but I could hear none of it--the roar of the ocean made everything else be silent. Colers were bright against the gray of the san, sky and water. i enjoyed watching and taking it all in. i ate lunch alone at a restaurant in town and it was ok. I thought of all the times Tom ate alone while he traveled for his job. I never asked him what that felt like--never thought of it until now. I have a feeling he made the best of it--maybe pretending I was with him like i did today thinking about him.
I put the inner binding on the quilt tonight. Now I just have to add the outer border from his jeans and I will be able to finish it. I can't wait to wrap up in my Tom quilt and remember. What a great thing memories are--one of my most treasured possessions.
Just finished watching the DVD from Tom's memorial service--laughed and cried all over again. What a wonderful tribute to a wonderful man who was and is so loved.
Tomorrow I drive home. I miss my children and grandchildren and HUGS! This has been a good time of coming away to think, to pray, to remember and to quilt.
Monday, June 21, 2010
Grief has moved in
It's been 6 weeks. It feels like it was yesterday and long ago all at the same time. At 3 weeks I did the expected and came down with a bug that sent me to bed for most of the week. My voice (what there was of it) sounded like I had morphed into a man with a very deep voice. During that week I slept and read and looked at all the Tom pictures in my bedroom. My cousin just sent me a new one that I don't remember ever seeing before--they've all become priceless treasures bringing back Tom's look of love and fun. I can transport myself back to those places and feel his presence and especially his arms around me--those arms that always felt so loving and protective.
Week 4 was mostly recovery--just getting my strength back. Still thinking about this grieving thing and trying to figure it out. I like lists. I like following directions knowing that they are taking me someplace like in sewing/quilting/gardening/cooking (sometimes). I can't find the grief directions. I've started reading a little bit but all it says is that there's no right way to grieve. Everyone does it their own way but just that it's important TO grieve. The books tell you to be gentle with yourself.
Then one morning I woke up thinking that grief was like a new person moving into my life--someone I don't know but is living with me going with me wherever I go and is a part of everything I do whether invited or not--he sticks like glue, can't shake him loose.
Thought about that for a while and then added to it. I needed to figure out how I was supposed to live/act/respond to his presence--what did he expect of me? Still looking for directions. What did he think of me when I felt joy or laughed wholeheartedly--was that ok? I knew he would understood when I cried or hurt so deep inside I thought I would sink into myself. Did he understand when I was happy? Still wrestling.
Then I woke up one morning (gotta love those early morning thoughts that come from the brain debriefing over night) and had this thought: Yes, Grief has moved in and is here to stay but who says he wants me to live according to his expectations? Who says he has any expectations at all? Who says he isn't here just to help me through this time/life? Who says he doesn't want me to be anyone but myself? Who says he doesn't want me to experience joy and happiness and deep belly laughter? All emotions seem to be magnified. Joy and happiness and laughter are all greater. It becomes a counter balance to the feelings of emptiness/lonliness/loss/pain.
I've never been one to question "why?" God's in charge and He knows the answer to that question. I am just so thankful that He is my Lord and I can trust Him in ALL things. I don't have to know the answers because I know that One who does. I know where Tom is and after watching him suffer this last year plus I can't grieve his passing. I do grieve the loss of his presence and the source of so much love and fun
Week 4 was mostly recovery--just getting my strength back. Still thinking about this grieving thing and trying to figure it out. I like lists. I like following directions knowing that they are taking me someplace like in sewing/quilting/gardening/cooking (sometimes). I can't find the grief directions. I've started reading a little bit but all it says is that there's no right way to grieve. Everyone does it their own way but just that it's important TO grieve. The books tell you to be gentle with yourself.
Then one morning I woke up thinking that grief was like a new person moving into my life--someone I don't know but is living with me going with me wherever I go and is a part of everything I do whether invited or not--he sticks like glue, can't shake him loose.
Thought about that for a while and then added to it. I needed to figure out how I was supposed to live/act/respond to his presence--what did he expect of me? Still looking for directions. What did he think of me when I felt joy or laughed wholeheartedly--was that ok? I knew he would understood when I cried or hurt so deep inside I thought I would sink into myself. Did he understand when I was happy? Still wrestling.
Then I woke up one morning (gotta love those early morning thoughts that come from the brain debriefing over night) and had this thought: Yes, Grief has moved in and is here to stay but who says he wants me to live according to his expectations? Who says he has any expectations at all? Who says he isn't here just to help me through this time/life? Who says he doesn't want me to be anyone but myself? Who says he doesn't want me to experience joy and happiness and deep belly laughter? All emotions seem to be magnified. Joy and happiness and laughter are all greater. It becomes a counter balance to the feelings of emptiness/lonliness/loss/pain.
I've never been one to question "why?" God's in charge and He knows the answer to that question. I am just so thankful that He is my Lord and I can trust Him in ALL things. I don't have to know the answers because I know that One who does. I know where Tom is and after watching him suffer this last year plus I can't grieve his passing. I do grieve the loss of his presence and the source of so much love and fun
Thursday, May 27, 2010
Hard question
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.
"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.
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.
Tuesday, January 26, 2010
Together we're 141!
It's been almost 3 weeks since I last wrote and I have no idea why it's taken me so long. Celebrated a wonderful 65th birthday/retirement on the 10th. The whole family was with us for church that morning--best birthday gift ever. Then on the 17th we celebrated Tom's 76th birthday with a family game of dominoes. He handily beat us all!
I'm learning to hold ALL I have in an open hand, knowing it's all God's anyway. Just when I think I have met that challenge something else comes up and I learn I've still got a ways to go.
We met with the surgeon on Monday and he is very pleased with how Tom has healed. We are delighted that there have been no more runs to ER. We're on another one of those plateaus where we know how to deal with all that is going on. Tom is on a good sleeping med that has no hangover feeling. The neck has healed well and I know how to take care of it. The next challenge I see coming is Tom's strength. He is having more difficulty getting in and out of bed and off the couch. I am looking into getting a lift chair for him. I've suggested he start thinking about a hospital bed that will be much easier to get in and out of and we can regulate it to a comfortable position. He's not ready yet so we will wait until he is comfortable with the idea.
Tomorrow Kemp is taking Tom to the aquarium. They will use the wheelchair for the first time. I am very proud of Tom for being willing to use it to make getting out easier.
He's also talking about wanting to get out and see people so I will set up some "dates"--trying for mid day to make it easier for him. I am so glad he is feeling like he wants to do something other than just be home. We also look forward to visits from friends and the hospice staff. Today the chaplain visited and we enjoyed him very much. His name is Steve Poole--just like the weatherman--easy to remember. We look forward to getting to know him better.
I'm learning to hold ALL I have in an open hand, knowing it's all God's anyway. Just when I think I have met that challenge something else comes up and I learn I've still got a ways to go.
We met with the surgeon on Monday and he is very pleased with how Tom has healed. We are delighted that there have been no more runs to ER. We're on another one of those plateaus where we know how to deal with all that is going on. Tom is on a good sleeping med that has no hangover feeling. The neck has healed well and I know how to take care of it. The next challenge I see coming is Tom's strength. He is having more difficulty getting in and out of bed and off the couch. I am looking into getting a lift chair for him. I've suggested he start thinking about a hospital bed that will be much easier to get in and out of and we can regulate it to a comfortable position. He's not ready yet so we will wait until he is comfortable with the idea.
Tomorrow Kemp is taking Tom to the aquarium. They will use the wheelchair for the first time. I am very proud of Tom for being willing to use it to make getting out easier.
He's also talking about wanting to get out and see people so I will set up some "dates"--trying for mid day to make it easier for him. I am so glad he is feeling like he wants to do something other than just be home. We also look forward to visits from friends and the hospice staff. Today the chaplain visited and we enjoyed him very much. His name is Steve Poole--just like the weatherman--easy to remember. We look forward to getting to know him better.
Tuesday, January 5, 2010
Be still and know
Woke up 3:00 am on Sunday morning with a very stuffy head and an upset stomach--bummer! My first concern was, please, Lord, don't let Tom get sick. We stayed home from church--again. Oh, how we miss being there.
Tom's neck is getting better every day--a huge praise! Today he said that he is feeling bored. Not surprised since his wife has been mostly in bed for 3 days. That's good he feels bored because that says he's not focused on a health issue but wants to do something. Hopefully I will be on the mend very soon and we can start getting out of the house a little bit. We're both feeling a little house-bound I think. We've got to figure out this new both-retired-life of ours--our latest challenge. I'm struggling with emotions but don't know how much of it is just being tired and sick so I'll wait to deal with them at another time.
Tom just got up to tell me that he felt really good! Those were really good words to read! Hoping for more of that.
Psalm 46 was sent to us by a friend this morning. I don't want to forget these words: The very first verse says, "God is our refuge and strength, a very present help in trouble." Very is a Hebrew word meaning: exceedingly, might, force, abundance; with muchness, muchness. Present is a Hebrew word meaning to appear, to be recognized, to be present, to prove to be, to be found sufficient, to be enough. so God is a mighty force. . .with much muchness, He is sufficient in our troubles!! He has proven to be enough. We are living epistles that God sends to share with others of the goodness of the Lord, to share the truth of why we know God to BE an Ever Present help in trouble. God is right in the midst of our lives, and all we face with that, we should not be moved from believing HE is ENOUGH. We will see His light dawn through the darkness, His help at break of day! Psalm 46:5: "God is in the midst of her, she will not be moved: god will help her when morning dawns."
So no matter what we are going through; no matter what we are facing; no matter what we are feeling. . .be still and know He is God. He, God the Father, jesus the Son of God and God the Holy Spirit is enough. God wants us to really believe this to the very depths of our being. How differently we might act if we truly believed this.
Psalm 46:10-11 "Cease striving and know that I am God; I will be exalted among the nations, I will be exalted in the earth." The LORD of hosts is with us; the God of Jacob is our stronghold."
Our friend finished with the words to a song of praise:
"Hide me now under your wings, Cover me within your mighty hand
When the oceans rise and thunders roar I will soar with you above the storm
Father, you are King over the flood. I will be still and know you are God
Find rest my soul in Christ alone
Know his power in quietness and trust"
Tom's neck is getting better every day--a huge praise! Today he said that he is feeling bored. Not surprised since his wife has been mostly in bed for 3 days. That's good he feels bored because that says he's not focused on a health issue but wants to do something. Hopefully I will be on the mend very soon and we can start getting out of the house a little bit. We're both feeling a little house-bound I think. We've got to figure out this new both-retired-life of ours--our latest challenge. I'm struggling with emotions but don't know how much of it is just being tired and sick so I'll wait to deal with them at another time.
Tom just got up to tell me that he felt really good! Those were really good words to read! Hoping for more of that.
Psalm 46 was sent to us by a friend this morning. I don't want to forget these words: The very first verse says, "God is our refuge and strength, a very present help in trouble." Very is a Hebrew word meaning: exceedingly, might, force, abundance; with muchness, muchness. Present is a Hebrew word meaning to appear, to be recognized, to be present, to prove to be, to be found sufficient, to be enough. so God is a mighty force. . .with much muchness, He is sufficient in our troubles!! He has proven to be enough. We are living epistles that God sends to share with others of the goodness of the Lord, to share the truth of why we know God to BE an Ever Present help in trouble. God is right in the midst of our lives, and all we face with that, we should not be moved from believing HE is ENOUGH. We will see His light dawn through the darkness, His help at break of day! Psalm 46:5: "God is in the midst of her, she will not be moved: god will help her when morning dawns."
So no matter what we are going through; no matter what we are facing; no matter what we are feeling. . .be still and know He is God. He, God the Father, jesus the Son of God and God the Holy Spirit is enough. God wants us to really believe this to the very depths of our being. How differently we might act if we truly believed this.
Psalm 46:10-11 "Cease striving and know that I am God; I will be exalted among the nations, I will be exalted in the earth." The LORD of hosts is with us; the God of Jacob is our stronghold."
Our friend finished with the words to a song of praise:
"Hide me now under your wings, Cover me within your mighty hand
When the oceans rise and thunders roar I will soar with you above the storm
Father, you are King over the flood. I will be still and know you are God
Find rest my soul in Christ alone
Know his power in quietness and trust"
Saturday, January 2, 2010
Seeing progress
We're finally seeing healing progress--YEAH! The stoma (hole in the neck) is healing well. There is still one particular sore in the trach but the rest looks good. There is still redness around the stoma but it seems to be a little less red. We've had a few uneventful days which we are thankful for. AND no ER visits!
Tom is feeling sensitive about having the tube out of his neck. While that is the goal I think that will take some time. He's concerned that he will gross people out but I've gotten used to it and believe that others will, too. He's very hopeful that he will feel up to going to church tomorrow. It will be good for him to be back. It's been a whole month.
I am hoping to get into a better sleep pattern. My body just doesn't want to sleep when I have the opportunity.
Tom is feeling sensitive about having the tube out of his neck. While that is the goal I think that will take some time. He's concerned that he will gross people out but I've gotten used to it and believe that others will, too. He's very hopeful that he will feel up to going to church tomorrow. It will be good for him to be back. It's been a whole month.
I am hoping to get into a better sleep pattern. My body just doesn't want to sleep when I have the opportunity.
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