Where did I leave off--oh, yes, we were having a quiet day. . .until about 4:00 when Tom was having difficulty breathing. Talked to Merati's nurse who said to put the tube back in. Easier said than done but we had the choice of me doing it OR taking him to ER. Dr. Merati wanted to see us the next morning. I knew that I would be more gentle so as hard as it was we got it back in. Tom felt immediate relief and we had a fairly good night.
Today is Christmas eve. We began it at the UW Med Center. It was decided to try an even shorter tube, use it during the night and try to keep it out as much as possible during the day. They also put him back on antibiotics for 5 days. We're still hopeful that the lesions in the trach will heal soon.
About 1:00 we headed over to Kylisa and Chris' house for our Christmas eve celebration. We enjoy nothing more than being with our children and grandchildren. It's strange to not be a part of the cooking this year but I had no energy for it and the kids are so capable. Very satisfying to watch the next generation take over and enjoy doing it. Love seeing them all get along so well and enjoy each other.
He, too, enjoyed the afternoon. Though when it got too loud he took some time out and slept. We came home about 7:00. He is fed, had his meds and is settled in for the night. I am close behind him but first will enjoy a cup of sleepy tea courtesy of daughter April. Tom was not up to going to our Christmas eve service tonight--it would have been a very long day for him. We both miss not being there. I am watching a wonderful Christmas concert on tv. Just goes to show that there are many ways to celebrate the birth of our Savior Jesus Christ. I love Christmas music--such a story to tell, such a wonderful God we serve who cared enough to send His Son so we could know Him better and be invited into such an intimate relationship for all eternity. What peace.
Peace--I laughed today when Tom wrote that he wanted "peace meds." I had to stop and think what he was talking about. Oh, yeah--I had been calling the lorazapan "calming drugs". I like Tom's name better! The other thing he enjoys writing is, "this surgical procedure was not a pain in the ass but a pain in the neck!" Yes, it does sound just like Tom! And I don't even want to censor him! I'm loving "hearing" every word he "speaks".
A friend shared something she learned in her grief support group. Someone there said, "don't worry about what's coming. Just do the next thing." I've been thinking alot about that--it's becoming a way of life--just doing the next thing--can't think much beyond it. Just good to hear someone say that that's enough.
Thursday, December 24, 2009
Wednesday, December 23, 2009
Quiet after storm
The quiet day we expected yesterday turned into a storm! The lesions in Tom's trach appeared to be a little worse again so I called Dr. Merati's nurse. She checked with the doc who said he wanted Tom to take the trach tube out and leave it out and to see him on Monday morning. This left both of us a little concerned--it's been like a security blanket knowing that it was keeping the trach open. What would happen without it even though that was the eventual goal?
About 2:00 in the afternoon I heard a thud and knew Tom had fallen. He had tried to kick something out of the way and took a tumble--right on his nose and forehead which he really skinned up. I was afraid he had had another stroke but he fought his way up (I wanted him to stay down until I knew he was ok) and assured me he was ok--kind of! After the fall he was very agitated. Talked to the hospice triage nurse (which I am REALLY starting to appreciate-- you can call ANYTIME and they answer right away!) and she suggested a little lorazapam. I was nervous that it might affect his breathing (relax him too much) but I was wrong and it did the job. Tom was able to relax and actually get some sleep. But after sleeping for awhile he woke with blood in his mouth and it just wouldn't stop--didn't think about him being on Plavex. A visiting nurse stopped by to check him out which made me feel much better before sleeping.
Tom was up and down most of the night but this morning we both went back to sleep after breakfast. We're trying feeding Tom just in the G tube since there is no longer any danger of aspirating. He likes it better--says it's more natural. It gets him away from the pump which he hates. Hopefully this will work for him.
We're still planning on trying "coffee and a little cake" on Christmas--might be Christmas eve--we'll see how he's doing.
So far today is that quiet day I've been hoping for. Praying it continues.
About 2:00 in the afternoon I heard a thud and knew Tom had fallen. He had tried to kick something out of the way and took a tumble--right on his nose and forehead which he really skinned up. I was afraid he had had another stroke but he fought his way up (I wanted him to stay down until I knew he was ok) and assured me he was ok--kind of! After the fall he was very agitated. Talked to the hospice triage nurse (which I am REALLY starting to appreciate-- you can call ANYTIME and they answer right away!) and she suggested a little lorazapam. I was nervous that it might affect his breathing (relax him too much) but I was wrong and it did the job. Tom was able to relax and actually get some sleep. But after sleeping for awhile he woke with blood in his mouth and it just wouldn't stop--didn't think about him being on Plavex. A visiting nurse stopped by to check him out which made me feel much better before sleeping.
Tom was up and down most of the night but this morning we both went back to sleep after breakfast. We're trying feeding Tom just in the G tube since there is no longer any danger of aspirating. He likes it better--says it's more natural. It gets him away from the pump which he hates. Hopefully this will work for him.
We're still planning on trying "coffee and a little cake" on Christmas--might be Christmas eve--we'll see how he's doing.
So far today is that quiet day I've been hoping for. Praying it continues.
Tuesday, December 22, 2009
The Invisible Woman
Just watched a great video. Tried to attach it to this blog but what came up was not at all what I expected so will just give the link and anyone can go to You Tube and see it for yourself. It's worth watching. It's titled INVISIBLE WOMAN by Nicole Johnson. She has a website at freshbrewed coffee.com. She also has one called GIRLFRIENDS--both worth watching. I'm very thankful for my girlfriends. Though we don't see each other much right now I know they are there.
The gift of a smile
Boy, the days go fast. Sunday Tom and I were both disappointed not to go the church. Tom was sure on Saturday night that he would be up to going but Sunday morning it was just too much so we went back to bed and slept some more.
Yesterday, Monday, we were at the UW Med Ctr at 10:00 am for a swallow test. It showed that the separation of the esophogus and trachea is correct. Tom had to swallow some really bitter tasting liquid. The highlight there was having the radiology tech be PK who we had met before. She is feisty and fun, an Oregon Duck working among the WN Dawgs and loving it that they are paying her! At the end of the visit she and Tom were dancing with each other, showing off their moves. That man just never ceasesto amazes me!
Next we went to Dr Merati's office to get the stitches out and get the trach checked out. Getting the stitches out was VERY painful but it's done. The doctor is concerned about 3 sores in the trachea that I will watch very carefully. They gave Tom a shorter tube hoping that it would rub less. We also have an antibiotic creme to use. The shorter tube is much easier to put in. We will also try leaving it out for periods of time.
The good news is that we are getting much better sleep at night. Tom is more relaxed AND we are back to playing cribbage. It's amazing how content one can become in living such a simple life. One of my greatest joys has become seeing a smile cross Tom's face. They used to be a constant. Now they are precious gifts.
Yesterday, Monday, we were at the UW Med Ctr at 10:00 am for a swallow test. It showed that the separation of the esophogus and trachea is correct. Tom had to swallow some really bitter tasting liquid. The highlight there was having the radiology tech be PK who we had met before. She is feisty and fun, an Oregon Duck working among the WN Dawgs and loving it that they are paying her! At the end of the visit she and Tom were dancing with each other, showing off their moves. That man just never ceasesto amazes me!
Next we went to Dr Merati's office to get the stitches out and get the trach checked out. Getting the stitches out was VERY painful but it's done. The doctor is concerned about 3 sores in the trachea that I will watch very carefully. They gave Tom a shorter tube hoping that it would rub less. We also have an antibiotic creme to use. The shorter tube is much easier to put in. We will also try leaving it out for periods of time.
The good news is that we are getting much better sleep at night. Tom is more relaxed AND we are back to playing cribbage. It's amazing how content one can become in living such a simple life. One of my greatest joys has become seeing a smile cross Tom's face. They used to be a constant. Now they are precious gifts.
Saturday, December 19, 2009
Scary day turns out ok
It's Saturday evening. I am enjoying an Andy Williams Christmas special from the '60s. Tom is settled for at least the first part of the night. I will soon follow him but first of all must catch up on the last few days.
Thursday started out quiet but when I took the trach tube out to clean it I really got scared. When I checked Tom's trach it looked like there was a hole/sore about the size of a dime a little way down. It was round and very bloody looking. I left the room just to take a deep breath and ask God to give me strength. I went back to check it and it was still the same. I called hospice and they said they would check with the doctor for me. Called Kemp and he said he would come right over. He said to call 911 NOW. I called but hung up but 911 has a way of finding you. They called me back and said they would be right here. Hospice called back and said to take Tom to ER. 911 arrived and after taking his vital signs said he was safe to transport so off to ER we went. Called the prayer chain on the way and asked them to pray. 3 hours later the ENT docs arrived. When they took a look they couldn't find what I was talking about. I don't know what happened--maybe there was clotted blood shaped in a perfect circle that Tom coughed up OR maybe God decided that this was more than we could handle (1 Cor 10:13) and healed it. It turned out to be a good visit because my greatest fear has been that I would do something wrong and cause harm to Tom. The docs said everything looked good and gave me some direction in how to take care of it even better. We came home exhausted again and went straight to bed for a nap. I had both of us really scared.
Friday we had nothing planned--just working on a few work projects that I am trying to finish. The hospice social worker called and asked to come by in the afternoon. We ended up having about a 2 hour conversation that was informative and helpful. I was feeling torn about hospice but after meeting with Chris decided that it would be a good thing to continue. We both were in bed by 8:00 pm. The first 3 times Tom needed help I got up with a smile but at 3:00 am told him that I really needed to get some sleep if he could manage without waking me. We got him well settled and didn't wake up again until 7:30 when I got up to give him meds and feed him. Decided to go back to bed and didn't get up until awaken by the phone at 10:30!
During those wakeful times (too bad you can't just go right back to sleep after being awaken!) I had a rather surprising realization. I realized that I have been angry. I know there are stages to grieving--denial, anger and acceptance--but I hadn't identified the anger part. I kept thinking that meant anger at God. The anger for me expressed itself in my thoughts of "if you're going to die then just do it because I don't want to go through the pain of doing this any more." That thought drove me crazy because I didn't want it but it kept coming back. Wouldn't you know that it would take another crisis to move on. Our time in the hospital drew us even closer and there is a tenderness between us that is even more precious. Tom is reaching out more. I am not feeling so closed off. And I don't feel angry any more. Now the problem is I really don't want to loose him but I don't feel afraid of the feelings anymore. I continue to meditate on Prov 3:5-6. I can't seem to get' enough of it. It's the verse that is carrying me through. "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." What incredible peace lies in those words. What a life long journey to understand it and embrace it. Another verse came up last night to be an encouragement--Joshua 1:9, a verse I have used so often in teaching children: "Be strong and courageouse. Do not be terrified; do not be discouraged. For the Lord your God will be with you wherever you go." What an awesome and mighty God we serve and worship. Thank you, Lord, for being with us in the midst of this. Thank you for all those who are faithfully praying for us. We are becoming very dependent on those prayers and on the grace of our Lord.
Thursday started out quiet but when I took the trach tube out to clean it I really got scared. When I checked Tom's trach it looked like there was a hole/sore about the size of a dime a little way down. It was round and very bloody looking. I left the room just to take a deep breath and ask God to give me strength. I went back to check it and it was still the same. I called hospice and they said they would check with the doctor for me. Called Kemp and he said he would come right over. He said to call 911 NOW. I called but hung up but 911 has a way of finding you. They called me back and said they would be right here. Hospice called back and said to take Tom to ER. 911 arrived and after taking his vital signs said he was safe to transport so off to ER we went. Called the prayer chain on the way and asked them to pray. 3 hours later the ENT docs arrived. When they took a look they couldn't find what I was talking about. I don't know what happened--maybe there was clotted blood shaped in a perfect circle that Tom coughed up OR maybe God decided that this was more than we could handle (1 Cor 10:13) and healed it. It turned out to be a good visit because my greatest fear has been that I would do something wrong and cause harm to Tom. The docs said everything looked good and gave me some direction in how to take care of it even better. We came home exhausted again and went straight to bed for a nap. I had both of us really scared.
Friday we had nothing planned--just working on a few work projects that I am trying to finish. The hospice social worker called and asked to come by in the afternoon. We ended up having about a 2 hour conversation that was informative and helpful. I was feeling torn about hospice but after meeting with Chris decided that it would be a good thing to continue. We both were in bed by 8:00 pm. The first 3 times Tom needed help I got up with a smile but at 3:00 am told him that I really needed to get some sleep if he could manage without waking me. We got him well settled and didn't wake up again until 7:30 when I got up to give him meds and feed him. Decided to go back to bed and didn't get up until awaken by the phone at 10:30!
During those wakeful times (too bad you can't just go right back to sleep after being awaken!) I had a rather surprising realization. I realized that I have been angry. I know there are stages to grieving--denial, anger and acceptance--but I hadn't identified the anger part. I kept thinking that meant anger at God. The anger for me expressed itself in my thoughts of "if you're going to die then just do it because I don't want to go through the pain of doing this any more." That thought drove me crazy because I didn't want it but it kept coming back. Wouldn't you know that it would take another crisis to move on. Our time in the hospital drew us even closer and there is a tenderness between us that is even more precious. Tom is reaching out more. I am not feeling so closed off. And I don't feel angry any more. Now the problem is I really don't want to loose him but I don't feel afraid of the feelings anymore. I continue to meditate on Prov 3:5-6. I can't seem to get' enough of it. It's the verse that is carrying me through. "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." What incredible peace lies in those words. What a life long journey to understand it and embrace it. Another verse came up last night to be an encouragement--Joshua 1:9, a verse I have used so often in teaching children: "Be strong and courageouse. Do not be terrified; do not be discouraged. For the Lord your God will be with you wherever you go." What an awesome and mighty God we serve and worship. Thank you, Lord, for being with us in the midst of this. Thank you for all those who are faithfully praying for us. We are becoming very dependent on those prayers and on the grace of our Lord.
Wednesday, December 16, 2009
Feels good to laugh
It is 12:08 pm and I am still in my pajamas. Just finished "breakfast" as a matter of fact! Whoo-hoo, we got some sleep last night!!!! Tom has been taking half of the minimum amount of pain meds but was hurting last night and asked for a little more. I gave him the minimum amount and it not only helped with the hurt but helped with sleep, too. He woke at 2:00 am but it didn't take long to get him settled again and comfortable. Got up and gave him meds and fed him at 7:30, called our daughter-in-law to wish her a happy birthday (didn't answer so she had to suffer through listening me sing happy birthday in a sleep-husky voice!), and went back to bed. At 9:30 our son woke us saying if we were going to wake them then he was going to wake us! How did I know they were going to sleep in--I thought she would be up and on her way to work! Good to laugh!
Last night I ran to Fred Meyer while Yura stayed with Tom. Amazing what can be accomplished in an hour! Found a great 7-drawer table on wheels with top-extension-things on both sides. It works great for all the med supplies that were delivered. The floor is ALMOST clear again!
A friend called this morning and we shared some great laughter and a few tears. Laughter really is good medicine. It just feels so good!
Something else that is happening is that Tom is reaching out and touching me more. I think when he was having to concentrate so much on breathing and not choking he couldn't think of more than taking care of himself. Since the surgery he is more his old self giving gentle touches that say he loves me (AND that he is calmer!)
I think I'm ready for that nap I promised myself yesterday.
Last night I ran to Fred Meyer while Yura stayed with Tom. Amazing what can be accomplished in an hour! Found a great 7-drawer table on wheels with top-extension-things on both sides. It works great for all the med supplies that were delivered. The floor is ALMOST clear again!
A friend called this morning and we shared some great laughter and a few tears. Laughter really is good medicine. It just feels so good!
Something else that is happening is that Tom is reaching out and touching me more. I think when he was having to concentrate so much on breathing and not choking he couldn't think of more than taking care of himself. Since the surgery he is more his old self giving gentle touches that say he loves me (AND that he is calmer!)
I think I'm ready for that nap I promised myself yesterday.
Tuesday, December 15, 2009
A nap is comin'
We came home yesterday at noon--exhausted. The respiration therapy lady was here to meet us with more equipment. Tom needs a humidifier to keep moist air going into his lungs--he hates it. He is supposed to wear it around his neck. I worked out a system where it hangs close to him from the pole we use to hang the feeding tube bag on. It's also become our new background "music" with a pretty loud hum.
An hour later a nurse from hospice came to get him admitted to the program. It was a busy afternoon. By 7:00 pm we were both in bed. Tom was up and down until about 1:00 am when I said that I really had to get some sleep and it he really needed something let me know, otherwise I was going to get some sleep. It's hard to say that I need something when he needs so much but without sleep I verge on cranky and I don't want to live there. He was good for the rest of the night and I slept until 7:00.
There is so much medical supplies to find places for. I need to find a small dresser for the side of the bed. It will help my morale just to get everything organized--right now it's everywhere.
Thought I would get a nap today but forgot that the lady from medicare supplement insurance was coming. But it was a good meeting and we got everything decided. Stacey is her name and she really knows her stuff--made it all make sense for me.
I totally forgot to give Tom pain meds at noon. That was something they changed in the hospital and I don't have it in my brain yet--well, I do now! Tom was really hurting. Got to get a schedule written because meds have changed. Glad for effective drugs. Hopefully when he gets his stitches out on Monday the pain will be gone. He also does a swallow test on Monday to make sure that the esophogus/trachea separation is correct. If all looks good then it won't be long until he can try some of that coffee he's been waiting for.
Am now waiting for the hospice nurse to come who will be part of our hospice team. Not enough time to lay down today so I will look forward to a nap tomorrow--a long one!
An hour later a nurse from hospice came to get him admitted to the program. It was a busy afternoon. By 7:00 pm we were both in bed. Tom was up and down until about 1:00 am when I said that I really had to get some sleep and it he really needed something let me know, otherwise I was going to get some sleep. It's hard to say that I need something when he needs so much but without sleep I verge on cranky and I don't want to live there. He was good for the rest of the night and I slept until 7:00.
There is so much medical supplies to find places for. I need to find a small dresser for the side of the bed. It will help my morale just to get everything organized--right now it's everywhere.
Thought I would get a nap today but forgot that the lady from medicare supplement insurance was coming. But it was a good meeting and we got everything decided. Stacey is her name and she really knows her stuff--made it all make sense for me.
I totally forgot to give Tom pain meds at noon. That was something they changed in the hospital and I don't have it in my brain yet--well, I do now! Tom was really hurting. Got to get a schedule written because meds have changed. Glad for effective drugs. Hopefully when he gets his stitches out on Monday the pain will be gone. He also does a swallow test on Monday to make sure that the esophogus/trachea separation is correct. If all looks good then it won't be long until he can try some of that coffee he's been waiting for.
Am now waiting for the hospice nurse to come who will be part of our hospice team. Not enough time to lay down today so I will look forward to a nap tomorrow--a long one!
Saturday, December 12, 2009
A gentle embrace
I've been trying to nap but my mind just won't quite shut down. I've been trying to figure out a feeling. Friday when the carolers came I said that I felt very humbled but why? Part of it was being on the receiving end when so much of my life it's been about giving. But what I realized today was the feeling that it was God reaching down and saying how much He cared, giving us a special gift of His love, His gentle embrace--THAT is humbling. The ones who came are the ones who said "yes" to His calling never knowing how much it would mean to those who would receive.
OK, now that I've written it maybe I can get some quiet brain time. Whoops, Tom wants to play some cribbage. He beat me last night. I'll see if I can do better today.
OK, now that I've written it maybe I can get some quiet brain time. Whoops, Tom wants to play some cribbage. He beat me last night. I'll see if I can do better today.
Friday, December 11, 2009
The rest of Friday
The Respirtory Therapy teacher came back this afternoon but Tom was so comfortable and didn't really want to have the tube taken out right them. It all worked out for the best because Emily (another RT person) came later and she walked me through it and I DID IT! I can do it--I can take care of Tom! High fives all around--well, at least between Tom and me. Later today I cleaned it all by myself--getting more confident.
It has been decided that we will wait until Monday to go home. Hospice will take over Tom's health care and it will take till then to get it all put together. This will also give us the time to feel comfortable with all we need to do.
It is 9:00 and Tom is settled in for the night. I am right behind him. We are trying a new medication that might help--we are hopeful.
It has been decided that we will wait until Monday to go home. Hospice will take over Tom's health care and it will take till then to get it all put together. This will also give us the time to feel comfortable with all we need to do.
It is 9:00 and Tom is settled in for the night. I am right behind him. We are trying a new medication that might help--we are hopeful.
Friday - First half
I went to bed last night with the wrong expectations--I expected to get some sleep! From 9:00 pm until 6:30 am Tom was up every two hours. At 1:30 am I came out of a sound sleep in response to his tapping on the side of the bed and I would like to say it was because of being sleep (is it deprived or depraved???) but I actually said that I couldn't keep doing this. I felt bad for saying it but I didn't take it back--all I wanted to do was SLEEP! It made Tom feel bad and he wrote on his board the next time I got up (30 minutes later), "I'm sorry" Needless to say that made me feel even worse. Somehow I was able to not be cranky the rest of the night and gave him the kind of care I would want. The problem is that when he has to go to the bathroom he has to go RIGHT NOW so there's no waiting for a nurse to answer the call button. There might be help on the way--talked to a doctor today about it and she is coming back later to try to come up with a solution. I can't believe how well I am functioning today on so little sleep! People must be praying!
Occupational Therapy came to talk about what Tom might need at home. She will come back and help with his first shower.
Respiration Therapy teacher came by and I got a lesson on how to care for the "stoma" (hole in Tom's trach). I'm fine with most of it but putting the tube back in is difficult 'cause I know it hurts. Talked to Tom about it and he said it hurts when it goes in but the pain stops when in. He won't always need the tube but it will be in through this healing process so I gotta get it. He will be back this afternoon to give me another shot at it.
Hospice social worker (Jodi) showed up about the same time. We will be under their care from the time we leave the hospital. They coordinate with our doctors. We will have a nurse on call 24/7 plus a nurse's aid to help as needed. Just because hospice is getting involved it doesn't mean Tom has been given a prognosis for time left. We qualify because he has a disease he is not going to recover from so the important thing now is to make his life as good and full as it can be with the limitations we've been given.
And the day is only half gone!
Occupational Therapy came to talk about what Tom might need at home. She will come back and help with his first shower.
Respiration Therapy teacher came by and I got a lesson on how to care for the "stoma" (hole in Tom's trach). I'm fine with most of it but putting the tube back in is difficult 'cause I know it hurts. Talked to Tom about it and he said it hurts when it goes in but the pain stops when in. He won't always need the tube but it will be in through this healing process so I gotta get it. He will be back this afternoon to give me another shot at it.
Hospice social worker (Jodi) showed up about the same time. We will be under their care from the time we leave the hospital. They coordinate with our doctors. We will have a nurse on call 24/7 plus a nurse's aid to help as needed. Just because hospice is getting involved it doesn't mean Tom has been given a prognosis for time left. We qualify because he has a disease he is not going to recover from so the important thing now is to make his life as good and full as it can be with the limitations we've been given.
And the day is only half gone!
Thursday, December 10, 2009
Day 2 and a Surprise Gift
It's now Thursday night and we have finished Day 2 after surgery. Not much sleep last night between Tom needing something and the nurses needing to do something. The kicker was the nurse who brought me instructions for taking care of the new opening. Did she really think I would read it at that time?! (Today I think it's comical.) I was concerned when I went to bed that I wouldn't hear Tom when he needed something so we worked it out that he would tap the suction tube on the bed railing. Well, it worked. The first time he tapped it I jumped up before I was even fully awake!
The doctors came in about 7:00 and were, again, pleased with how Tom is healing. They cleaned the tube and put it back easily. Later in mo rning a respiration gal came in and took the tube out again but didn't put it back so easily. I requested that she not remove it again but let the doctors do it. Sure am getting assertive! But that also made me concerned about ME doing it. This afternoon when the doctor stopped back in he said that Tom will probably be going home on Saturday! While I am excited to get him home I know that that means I need to be able to take care of him. When I meet with the respiration teacher tomorrow I'm hoping I am a good student and that I don't hurt Tom.
We took 2 strolls through the halls--Tom showing off with his fancing footwork to anyone we passed. He also has the nurses charmed--are we surprised?
During my mostly sleepless night (ok, so I ate chocolate after dinner and I'm sure that didn't help but it sure tasted good!) a couple of Bible verses kept coming to mind. The first was Prov 3:5-6: 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. The other was I Cor 10:13: No temptation (trial) has seized you except what is common to man and God is faithful who will not let you be tempted (tried) beyond what you are able but with the temptation (trial) will provide a way of escape. I personallized both and enjoyed praying them back to God.
The other thing that moved from head to heart, from knowing it to really knowing I know it--we are not the body we live in. As parts are taken away from Tom it's his spirit that is so much more real than the frame it lives in. It's so clear that as his body fails him he lives on and because of his faith in Jesus Christ will never die. His body will but HE will just change addresses and have a new body that will never fail him. What blessed assurance.
It's also an incredible blessing to be able to spend this time with Tom--IF I can just get this new nursing skill mastered!
The most amazing thing just happened. Just after 7:30 pm 4 women and 2 young girls popped their heads in to ask if we would like to hear some Christmas music! Would we! They sang 4 or 5 songs for us. I cried. Tom directed. We learned that they were from Antioch and we know people in common. I told them I would be missing the children's musical on Sunday. This was like a gift to replace the one I will miss. Before they left we circled Tom's bed and they prayed for us. And OF COURSE Tom got a hug from each one before they left! It was a beautiful gift we were given and the bond we shared was much to be thankful for.
The doctors came in about 7:00 and were, again, pleased with how Tom is healing. They cleaned the tube and put it back easily. Later in mo rning a respiration gal came in and took the tube out again but didn't put it back so easily. I requested that she not remove it again but let the doctors do it. Sure am getting assertive! But that also made me concerned about ME doing it. This afternoon when the doctor stopped back in he said that Tom will probably be going home on Saturday! While I am excited to get him home I know that that means I need to be able to take care of him. When I meet with the respiration teacher tomorrow I'm hoping I am a good student and that I don't hurt Tom.
We took 2 strolls through the halls--Tom showing off with his fancing footwork to anyone we passed. He also has the nurses charmed--are we surprised?
During my mostly sleepless night (ok, so I ate chocolate after dinner and I'm sure that didn't help but it sure tasted good!) a couple of Bible verses kept coming to mind. The first was Prov 3:5-6: 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. The other was I Cor 10:13: No temptation (trial) has seized you except what is common to man and God is faithful who will not let you be tempted (tried) beyond what you are able but with the temptation (trial) will provide a way of escape. I personallized both and enjoyed praying them back to God.
The other thing that moved from head to heart, from knowing it to really knowing I know it--we are not the body we live in. As parts are taken away from Tom it's his spirit that is so much more real than the frame it lives in. It's so clear that as his body fails him he lives on and because of his faith in Jesus Christ will never die. His body will but HE will just change addresses and have a new body that will never fail him. What blessed assurance.
It's also an incredible blessing to be able to spend this time with Tom--IF I can just get this new nursing skill mastered!
The most amazing thing just happened. Just after 7:30 pm 4 women and 2 young girls popped their heads in to ask if we would like to hear some Christmas music! Would we! They sang 4 or 5 songs for us. I cried. Tom directed. We learned that they were from Antioch and we know people in common. I told them I would be missing the children's musical on Sunday. This was like a gift to replace the one I will miss. Before they left we circled Tom's bed and they prayed for us. And OF COURSE Tom got a hug from each one before they left! It was a beautiful gift we were given and the bond we shared was much to be thankful for.
Wednesday, Day 1 after surgery
Returned to the hospital at 7:00 am. Tom had a pretty good night. They gave him something to help him sleep. I also took something to help me sleep and woke up feeling ready to go at 5:00 am. Kylisa picked me up and drove me to the hospital so I wouldn't have to put a car in the parking garage. Physical Therapy came and decided he really didn't need them. (His dance moves are just fine!) Occupational Therapy will work with us while we are here and when we go home to help us adjust to taking care of this new "hole." Nurses are great--Michelle, Meghan and Farrah.
Left ICU at 1:30 for a "room of our own." It's a little one but we will manage. They think we will be here through the weekend. I have moved in--this is really DOWNSIZING!
Tom's neck is swollen and very bruised looking but the doctors are happy with how it looks so we are happy, too. Tom has been more communicative via his white board than he has been since he started using it. I think it's because he doesn't have to think about breathing and I love it.
Tonight I am trying to figure out Itunes and Ipods and Internet connections. THAT'S what I want for Christmas--an organized Ipod! Kemp is bringing a small humidifier for the room--One of the hardest parts is the dry air and my nose!
No computer hookup yet so will post this when I get that figured out.
Left ICU at 1:30 for a "room of our own." It's a little one but we will manage. They think we will be here through the weekend. I have moved in--this is really DOWNSIZING!
Tom's neck is swollen and very bruised looking but the doctors are happy with how it looks so we are happy, too. Tom has been more communicative via his white board than he has been since he started using it. I think it's because he doesn't have to think about breathing and I love it.
Tonight I am trying to figure out Itunes and Ipods and Internet connections. THAT'S what I want for Christmas--an organized Ipod! Kemp is bringing a small humidifier for the room--One of the hardest parts is the dry air and my nose!
No computer hookup yet so will post this when I get that figured out.
Tuesday, December 8, 2009
Day of Surgery
We checked in at our appointed time of 7:00 am. Then we sat and waited for an hour for them to take us to surgery prep. Everyone was very kind. Then our doctor came in and informed us that he would need a few minutes before surgery got started so he could check the text book to make sure he knew how to do the procedure! Wouldn't you know--a doctor with the same sense of humor as the patient! Tom was taken to surgery at 9:10.
I went to the surgery waiting room which was very cool as in cold. There wasa volunteer man sitting at the desk and I mentioned that it was cold and he offered to get me a blanket. There were about 6 other people in the room and I suggested that we all needed one. He responded with WARM blankets for everyone. I enjoyed reading "The Christmas Story" by Glenn Beck and dozing off for the next 2 1/2 hours.
At 11:45 they called to say Tom was out of surgery. Dr Merati soon came in to tell me that everything went well and he was pleased. Half an hour later they took me back to be with Tom. He was alert and calm. Then his heart rate went up. They are not sure why and are watching it. I said it was just because his wife was so near!
Tom was taken to ICU as a precaution for 24 hours. It is so amazing to see Tom so calm and at peace after struggling 24/7 with his breathing and trying to avoid choking. His color is good. His mouth is dry. He says his nose feels funny--no air going through it. That will take some getting used to. The hole in his neck will also take some getting used to. The next 5 days we'll receive instruction.
When I first saw the hole I was feeling apprehensive about being up to the challenge but as the day went on I am feeling less queasy and trust that by the end of the week I'll know what I'm doing--that's what I'm praying for.
Looking into Tom's face tonight as he rested was so precious. I love him so much and look forward to having him home again. What is it about difficult times that bring you closer together. We're both looking forward to that first cup (sip, whatever) of coffee coming soon. Since the esophagus and trachea are completely separated there is no danger of choking or aspirating so he will be able to try some things in his mouth again and see what happens. Tom can't wait! Neither can I.
I went to the surgery waiting room which was very cool as in cold. There wasa volunteer man sitting at the desk and I mentioned that it was cold and he offered to get me a blanket. There were about 6 other people in the room and I suggested that we all needed one. He responded with WARM blankets for everyone. I enjoyed reading "The Christmas Story" by Glenn Beck and dozing off for the next 2 1/2 hours.
At 11:45 they called to say Tom was out of surgery. Dr Merati soon came in to tell me that everything went well and he was pleased. Half an hour later they took me back to be with Tom. He was alert and calm. Then his heart rate went up. They are not sure why and are watching it. I said it was just because his wife was so near!
Tom was taken to ICU as a precaution for 24 hours. It is so amazing to see Tom so calm and at peace after struggling 24/7 with his breathing and trying to avoid choking. His color is good. His mouth is dry. He says his nose feels funny--no air going through it. That will take some getting used to. The hole in his neck will also take some getting used to. The next 5 days we'll receive instruction.
When I first saw the hole I was feeling apprehensive about being up to the challenge but as the day went on I am feeling less queasy and trust that by the end of the week I'll know what I'm doing--that's what I'm praying for.
Looking into Tom's face tonight as he rested was so precious. I love him so much and look forward to having him home again. What is it about difficult times that bring you closer together. We're both looking forward to that first cup (sip, whatever) of coffee coming soon. Since the esophagus and trachea are completely separated there is no danger of choking or aspirating so he will be able to try some things in his mouth again and see what happens. Tom can't wait! Neither can I.
Saturday, December 5, 2009
Where's your focus?
I keep thinking every day that I am going to sit down and write and then another day goes by and it hasn't happened but I am not going to bed tonight until I have gotten some of what has been going on in my head down and out. It's been a week full of many emotions and searching.
I don't remember anything else that my pastor said last Sunday except a question that he asked--"Where is your focus?" The power of that simple question has had me wrestling and thinking all week. Sunday afternoon I spent sinking in a pity party until THAT QUESTION surfaced again and my answer had to be that my focus was on me--whoops! It was incredible how fast my mood/emotions/spirit lifted when I started singing praise songs. During the night I thought back on what had occured--a lesson I keep learning over and over--it's a minute by minute kind of thing. A funny kind of illustration came to mind--it's like a football team. If the quarterback does his own thing, focusing on himself the game becomes chaotic BUT when he follows the direction and guidance of the coach the plays make sense. A purpose and a plan is realized.
I don't know what God is doing with us but I know He does know. This is not a pause in our lives, a time out--we are doing life. I'm not being taken out of life. I'm being given the privilege of caring for a very special man. All this from being reminded to check where my focus is. It's either on me or it's on Jesus. If it's on me I'll never be satisfied or content. When it's on Jesus I experience peace and joy and an amazing contentment. Circumstances are the same. I'm not.
We're thankful that Tom has had no serious breathing episodes the last 12 days--just 2 more before the surgery. I asked him if he was nervous about it and he said, "no"--just want to get it done.
Today we went to the ALS Support Group--meets on the first Saturday of the month. What a wonderful group of people who are bonded together by a common battle. Today there was a lot of laughter shared. Very determined people to live life to the fullest. Inspiring.
I don't remember anything else that my pastor said last Sunday except a question that he asked--"Where is your focus?" The power of that simple question has had me wrestling and thinking all week. Sunday afternoon I spent sinking in a pity party until THAT QUESTION surfaced again and my answer had to be that my focus was on me--whoops! It was incredible how fast my mood/emotions/spirit lifted when I started singing praise songs. During the night I thought back on what had occured--a lesson I keep learning over and over--it's a minute by minute kind of thing. A funny kind of illustration came to mind--it's like a football team. If the quarterback does his own thing, focusing on himself the game becomes chaotic BUT when he follows the direction and guidance of the coach the plays make sense. A purpose and a plan is realized.
I don't know what God is doing with us but I know He does know. This is not a pause in our lives, a time out--we are doing life. I'm not being taken out of life. I'm being given the privilege of caring for a very special man. All this from being reminded to check where my focus is. It's either on me or it's on Jesus. If it's on me I'll never be satisfied or content. When it's on Jesus I experience peace and joy and an amazing contentment. Circumstances are the same. I'm not.
We're thankful that Tom has had no serious breathing episodes the last 12 days--just 2 more before the surgery. I asked him if he was nervous about it and he said, "no"--just want to get it done.
Today we went to the ALS Support Group--meets on the first Saturday of the month. What a wonderful group of people who are bonded together by a common battle. Today there was a lot of laughter shared. Very determined people to live life to the fullest. Inspiring.
Thursday, November 26, 2009
Happy Thanksgiving
Now I know why God gave us memories--to carry us through days like today. I have so enjoyed thinking back over the years of Thanksgivings celebrated with extended family. All my growing up years there were aunts and uncles and cousins and grandparents who would gather every year to celebrate. Only one thing I regret from those early years--my cousin Judi had me convinced that I would not like pumpkin pie but she was willing to take it off my hands. Not sure when I discovered that I really did like it--she owes me a lot of pie!
Tom had a rough night last night along with running a low grade fever. It was normal this morning but up again tonight. Not sure what is going on. With little sleep over night we both napped today. I am up much too late tonight but am enjoying putting remembrances of Tom into a book and lost track of the time. I will keep this entry short.
Kemp and Angie brought me a plate of tradition goodies which I thoroughly enjoyed. Tom pretended that his formula dinner was really turkey. The best part of our day was sitting and reading all the messages of thanksgiving for Tom from family and friends. Tom wrote that he was "overwhelmed" by what people shared. It is a beautiful thing to see a picture of a person painted with words. I love it that people can see into Tom for who he is--that he is so open and real, that he so genuinely loves and cares. (If you are reading this and would like to send in your thoughts about Tom I would love to add it to this work in progress. I plan to have the book ready to go to print by Dec 1. It's also fun to add a picture to go with your words.)
12 more days until the surgery--we are counting them down. But today we will end by saying again how thankful we are for so much in our lives--for our family, children, grandchildren, and dear friends who have become family. We thank God for each of you--gifts to treasure always. Most of all we are thankful for our Lord and Savior, Jesus Christ who binds us all together.
Tom had a rough night last night along with running a low grade fever. It was normal this morning but up again tonight. Not sure what is going on. With little sleep over night we both napped today. I am up much too late tonight but am enjoying putting remembrances of Tom into a book and lost track of the time. I will keep this entry short.
Kemp and Angie brought me a plate of tradition goodies which I thoroughly enjoyed. Tom pretended that his formula dinner was really turkey. The best part of our day was sitting and reading all the messages of thanksgiving for Tom from family and friends. Tom wrote that he was "overwhelmed" by what people shared. It is a beautiful thing to see a picture of a person painted with words. I love it that people can see into Tom for who he is--that he is so open and real, that he so genuinely loves and cares. (If you are reading this and would like to send in your thoughts about Tom I would love to add it to this work in progress. I plan to have the book ready to go to print by Dec 1. It's also fun to add a picture to go with your words.)
12 more days until the surgery--we are counting them down. But today we will end by saying again how thankful we are for so much in our lives--for our family, children, grandchildren, and dear friends who have become family. We thank God for each of you--gifts to treasure always. Most of all we are thankful for our Lord and Savior, Jesus Christ who binds us all together.
Monday, November 23, 2009
What day is it anyway?
It's the end of Monday but so much has happened today that it feels more like Tuesday!
Our day was filled with many doctors visits. Kemp and Kylisa joined us to hear what they had to say. At 2:30 I think there were 7 doctors in our room to discuss the future. Last summer Tom had refused a procedure to surgically separate his trachea and esophagus. After experiencing the inability to breathe he was willing to listen again. The doctors patiently described the procedure and the pros and cons. Tom is considered a prime candidate for it since it would eliminate the possiblity of aspirating or choking. It would mean having a hole in the front of his neck but he would be able to put food in his mouth again to at least taste it without worrying about it going down the wrong pipe. When the doctors left we talked it over and Tom said he wanted to have it done. We let one of the doctors know and they got in touch with the doctor who does this surgery. We were amazed when he and his assistant came to our room at 6:00 pm to talk about it. He agreed that Tom was a prime candidate for the surgery. We asked when he would be able to do it. (We are concerned about going home and still having to deal with the problem of breathing.) The doctor said that there is a possibility he could do it TOMORROW IF he can work out the schedule. I asked Tom if that was too fast and he wrote, "Not fast enough." We are hoping and praying it will be tomorrow. We will know about noon.
Next cool thing--the doctor's assistant told us that just a few doors down was a woman who had the surgery done just last week. (The doctor told us he averages one of these per year!) We asked if we might be able to meet her and were given a positive response. We enjoyed meeting Lynn and Peter and now have new friends. They answered a lot of our questions and were very encouraging about the procedure.
Tom is sleeping. I have finally finished my lunch. The nurse was able to get me connected to the internet so I am feeling connected again. And now I will try to get some sleep, too, and wait to see what tomorrow will bring.
Our day was filled with many doctors visits. Kemp and Kylisa joined us to hear what they had to say. At 2:30 I think there were 7 doctors in our room to discuss the future. Last summer Tom had refused a procedure to surgically separate his trachea and esophagus. After experiencing the inability to breathe he was willing to listen again. The doctors patiently described the procedure and the pros and cons. Tom is considered a prime candidate for it since it would eliminate the possiblity of aspirating or choking. It would mean having a hole in the front of his neck but he would be able to put food in his mouth again to at least taste it without worrying about it going down the wrong pipe. When the doctors left we talked it over and Tom said he wanted to have it done. We let one of the doctors know and they got in touch with the doctor who does this surgery. We were amazed when he and his assistant came to our room at 6:00 pm to talk about it. He agreed that Tom was a prime candidate for the surgery. We asked when he would be able to do it. (We are concerned about going home and still having to deal with the problem of breathing.) The doctor said that there is a possibility he could do it TOMORROW IF he can work out the schedule. I asked Tom if that was too fast and he wrote, "Not fast enough." We are hoping and praying it will be tomorrow. We will know about noon.
Next cool thing--the doctor's assistant told us that just a few doors down was a woman who had the surgery done just last week. (The doctor told us he averages one of these per year!) We asked if we might be able to meet her and were given a positive response. We enjoyed meeting Lynn and Peter and now have new friends. They answered a lot of our questions and were very encouraging about the procedure.
Tom is sleeping. I have finally finished my lunch. The nurse was able to get me connected to the internet so I am feeling connected again. And now I will try to get some sleep, too, and wait to see what tomorrow will bring.
Just in time
It's always amazing how when God is teaching me something how he gives me the opportunity to practice it! On Wednesday I was listening to a Christian teacher on my way to my office--running late but arriving just as the speaker finished. He was talking about why we swing from trust to doubt in our relationship with God. He said we swing to the doubt side when we focus on the circumstances, when we feel weak, listen to our interpretation of our circumstances or the interpretation of others, or listen to the whispers of Satan. We swing back to trust when we remember the promises of God, recall the nature of God, ask God to show us His perspective, practice God centered prayer and wait on God (as opposed to "what can I do to fix it?").
The very next day i had such a struggle coping with ANYTHING. My focus had shifted to all that I lost and was losing. Anxious thoughts about the future filled my mind. My daughter invited me months ago to go with her and friends to a fun event on Saturday but now my head was saying that I shouldn't be having such "frivilous fun" when so much serious stuff was going on in the family and all around us.
The next day I thought about the lesson I had learned and thought about my Thursday--I had swung to the doubt side but sure didn't want to stay there. I started to think about the promises and nature of God. I asked His perspective and spent time just praising Him. It worked. My whole perspective changed and joy returned.
On Saturday morning Tom and I attended the memorial service for Vanessa. When we arrived we were delighted to see so many people from our past whose paths we rarely cross any more. Tom was his old gregarious self and I found it hard to keep up with him as he went from person to person greeting them with his hugs and expression of "it's so good to see you!" The service was a beautiful tribute to a beautiful woman and the Jesus she loves. I wore pink because it was her favorite color and I thought (too late) how fun it would have been to suggest that everyone to wear her favorite color to her honor--she would have loved it!
On our way home Tom had difficulty breathing but when I asked him about going to a doctor to get it checked he said no, he just wanted to go home and get some sleep which we did. When he woke up 2 hours later he was gasping for air and I said that's it, we're going to the ER. We arrived at 4:30 pm and 12 hours later we were admitted to the hospital. Haven't pulled an all nighter in years--it's going to take awhile to catch up on that lost sleep. We knew god was in control when the doctor came in and told us that he understood what we were talking about because his father had ALS.
Tom had another breathing episode while in ER so thre doctor was able to see what we were talking about. Apparently it's not just the secretions that Tom has to battle but the muscles in the larynx are weakening and that is adding to his difficulties. It was decided that staying in the hosital through Monday and seeing several of our specialists was the way to go.
By Sunday the respiratory therapist had already helped us by teaching us new suction techniques. We were able to prevent several episodes from taking hold so that was good news. The other goal is to complete a medical directive or rather, confirm that the medical directive Tom has is what he still wants. Those converations will take place on Monday.
May God help us to think clearly, to seek His will for our lives and to rest in His peace and grace AND the knowledge that His Son has paid the price for our salvation. The promise of eternal life makes all the difference. May our lives truly reflect His presence with us and in us.
The very next day i had such a struggle coping with ANYTHING. My focus had shifted to all that I lost and was losing. Anxious thoughts about the future filled my mind. My daughter invited me months ago to go with her and friends to a fun event on Saturday but now my head was saying that I shouldn't be having such "frivilous fun" when so much serious stuff was going on in the family and all around us.
The next day I thought about the lesson I had learned and thought about my Thursday--I had swung to the doubt side but sure didn't want to stay there. I started to think about the promises and nature of God. I asked His perspective and spent time just praising Him. It worked. My whole perspective changed and joy returned.
On Saturday morning Tom and I attended the memorial service for Vanessa. When we arrived we were delighted to see so many people from our past whose paths we rarely cross any more. Tom was his old gregarious self and I found it hard to keep up with him as he went from person to person greeting them with his hugs and expression of "it's so good to see you!" The service was a beautiful tribute to a beautiful woman and the Jesus she loves. I wore pink because it was her favorite color and I thought (too late) how fun it would have been to suggest that everyone to wear her favorite color to her honor--she would have loved it!
On our way home Tom had difficulty breathing but when I asked him about going to a doctor to get it checked he said no, he just wanted to go home and get some sleep which we did. When he woke up 2 hours later he was gasping for air and I said that's it, we're going to the ER. We arrived at 4:30 pm and 12 hours later we were admitted to the hospital. Haven't pulled an all nighter in years--it's going to take awhile to catch up on that lost sleep. We knew god was in control when the doctor came in and told us that he understood what we were talking about because his father had ALS.
Tom had another breathing episode while in ER so thre doctor was able to see what we were talking about. Apparently it's not just the secretions that Tom has to battle but the muscles in the larynx are weakening and that is adding to his difficulties. It was decided that staying in the hosital through Monday and seeing several of our specialists was the way to go.
By Sunday the respiratory therapist had already helped us by teaching us new suction techniques. We were able to prevent several episodes from taking hold so that was good news. The other goal is to complete a medical directive or rather, confirm that the medical directive Tom has is what he still wants. Those converations will take place on Monday.
May God help us to think clearly, to seek His will for our lives and to rest in His peace and grace AND the knowledge that His Son has paid the price for our salvation. The promise of eternal life makes all the difference. May our lives truly reflect His presence with us and in us.
Tuesday, November 17, 2009
Catching up
On Sunday evening Vanessa went home to be with the Lord. Vanessa is the wife of our worship leader at church. She plays the piano like few others. Sometimes I called her Brenda--which made us both laught. She had double pnemonia, H1N1 and other health issues. She is going to be very missed. The picture I have of Vanessa is sitting at a perfectly tuned piano using the incredible gift God gave her and playing to everyone's delight. Her fingers will work perfectly and she will have feeling in her feet. She will have no more pain. We grieve because we will miss her but she is with her Lord and Savior. What great joy!
Today Ruth suffered a stroke and aneurism. Ruth is in her 80s and full of wisdom. She is in Harborview where they hope to relieve the bleeding and get it stopped. Ruth is God's ambassador to so many of us. She speaks words of wisdom and encouragement. She calls just when you need her. If she could speak to us tonight I think she would be saying, "Don't worry about me. I'm safe with my Jesus. Remember how much He loves you." I pray that God will return her to us for awhile longer. I for one, am not ready to do life without her. I trust God with Ruth. I know she has absolute confidence in Him.
I haven't written for a long time. These two events have reminded me not to put off that which I consider important. For some reason writting has been difficult. I began several times but always deleted it. I need to write so this time I will hit "publish" and not delete no matter what.
Tom continues to battle the saliva. He has had two botox treatments. While I believe it is helping, the challenge is knowing what medication to give and how much. It's a guessing game. His sense of humor is still intact for which I will always be grateful. To say, "I love you", he touches my finger with his finger. Then one day he touched 2 fingers to 2 fingers. But the one I like is when he touched all 5 fingers to all 5 fingers. He still has lots of love to give and I'm soaking it up.
Haven't written since before our son's wedding. I don't think I've ever been to such a FUN celebration. Angie has an amazing eye for detail and did an outstanding job of planning and executing the weekend. The weather even cooperated--beautiful blue sky days. Tom did dance me down the aisle but turned in for the evening before we had a chance to dance on the dance floor. Being in a large group of people is difficult so after watching the wedding and spending some time with he dear friend, Bob, he was ready to call it a night. After helping him turn in I, however, returned to the festivities and thoroughly enjoyed the party. I even got to dance with my grandson Hunter and granddaughter Katie.
Two weeks ago I submitted my letter of retirement from Children's Ministry at the end of December. Eleven years ago God made it very clear that He was calling me into this ministry. He has now made it very clear that He is calling me out of it. I will miss it but I need to just focus on taking care of Tom right now. Multitasking just isn't as easy as it has been. I know God has a plan for us and will wait to see how He leads. Meanwhile I plan to take life one day at a time and hopefully live it to the fullest.
Today Ruth suffered a stroke and aneurism. Ruth is in her 80s and full of wisdom. She is in Harborview where they hope to relieve the bleeding and get it stopped. Ruth is God's ambassador to so many of us. She speaks words of wisdom and encouragement. She calls just when you need her. If she could speak to us tonight I think she would be saying, "Don't worry about me. I'm safe with my Jesus. Remember how much He loves you." I pray that God will return her to us for awhile longer. I for one, am not ready to do life without her. I trust God with Ruth. I know she has absolute confidence in Him.
I haven't written for a long time. These two events have reminded me not to put off that which I consider important. For some reason writting has been difficult. I began several times but always deleted it. I need to write so this time I will hit "publish" and not delete no matter what.
Tom continues to battle the saliva. He has had two botox treatments. While I believe it is helping, the challenge is knowing what medication to give and how much. It's a guessing game. His sense of humor is still intact for which I will always be grateful. To say, "I love you", he touches my finger with his finger. Then one day he touched 2 fingers to 2 fingers. But the one I like is when he touched all 5 fingers to all 5 fingers. He still has lots of love to give and I'm soaking it up.
Haven't written since before our son's wedding. I don't think I've ever been to such a FUN celebration. Angie has an amazing eye for detail and did an outstanding job of planning and executing the weekend. The weather even cooperated--beautiful blue sky days. Tom did dance me down the aisle but turned in for the evening before we had a chance to dance on the dance floor. Being in a large group of people is difficult so after watching the wedding and spending some time with he dear friend, Bob, he was ready to call it a night. After helping him turn in I, however, returned to the festivities and thoroughly enjoyed the party. I even got to dance with my grandson Hunter and granddaughter Katie.
Two weeks ago I submitted my letter of retirement from Children's Ministry at the end of December. Eleven years ago God made it very clear that He was calling me into this ministry. He has now made it very clear that He is calling me out of it. I will miss it but I need to just focus on taking care of Tom right now. Multitasking just isn't as easy as it has been. I know God has a plan for us and will wait to see how He leads. Meanwhile I plan to take life one day at a time and hopefully live it to the fullest.
Sunday, August 9, 2009
Back to writing.
It's been a whole month with Kirstin and Yura AND Hunter and Maximus. We've settled into somewhat of a routine. Tom and I continue to be very grateful to be here. I especially have enjoyed getting to spend more time with grandboys. For some reason it's been harder for me to write--not sure what that's all about. Here are some things I have learned over the last few weeks.
For 40 years Tom and I have willingly done what was important to the other person. If one of us really wanted to do something, the other went along unless there was a really good reason. That has changed and it's taking some adjusting attitude. One night our flock group was getting together and I had REALLY been looking forward to it but Tom said he didn't feel well and didn't want to go. To my way of thinking he was using how he felt as an excuse and just didn't want to go. I called our friends to say we wouldn't be there and that Tom as being a "crabby old man". As soon as the words were out of my mouth I regretted them but it took several days of seeking God's help and wisdom to understand what was going on between us and within myself. I've been spoiled. Tom has always taken such good care of me and I miss it. But then the very next day I was sitting in the porch swing rocking a sleeping Maximus. I reached for a pillow to put behind my head but it fell to the floor and I couldn't get it without disturbing M. Tom must have been watching through the window because here he came with a pillow and gently put it behind my head and gave me a gentle touch on my cheek. I know that Tom has all he can deal with and have decided that I will continue to invite him to participate and do things but the choice is his and I WILL NOT resent his saying "no". My goal right now is to be as supportive as I can be and allow him to make his own decisions--to be his wife and not his mother.
Last weekend we took the RV for an overnight to Oak Harbor to visit longtime friends. One of the best things was the way Norm spent talking with Tom one on one. He got Tom to communicate more than he's done in a long time. They both have health issues and were able to speak very openly with each other. It was a rare time and we left feeling very thankful for our time with them.
Last week Tom and I took Maximus to the zoo with our daughter Kylisa and he two boys. We were on the go for 2 hours and walking much of that time. Tom amazes me. He says he doesn't think he can walk very far and then he surprises us both. He enjoyed the animals. The giraffes were being very affectionate with each other rubbing their necks against each other and their faces. Tom wrote on his board: "They're necking!" Made us both laugh.
I've been on a 3 game winning streak in cribbage but today Tom is back in the winning circle. He's also back to doing jigsaw puzzles.
His biggest challenge continues to be managing saliva. We're hopeful that the doctor we're seeing in September will be able to help--wish it was sooner.
Kirstin and Yura took the boys to Lopez Island for the weekend with friends. While they were gone I had a great time tearing the kitchen apart and reorganizing all the cupboards. Kirstin is amazing at organizing other people but, like most of us, has found it hard to organize herself. She had given me permission to do whatever I wanted with it. I kept thinking I should stop but once I got going I just kept going. I said they would either love me or say that they would never leave me home alone again. They liked it! What a fun gift to give them.
I kept hoping that their chickens would be gone while they were gone but each day I got up and they had survived the night--phooey! I am still jealous of the real estate they have been given. I have to laugh when I think of growing up on a chicken farm where we had thousands of chickens and now here I am living with 2 more. I'm sure there's humor in there somewhere.
Other big treats were baking cookies with Hunter and his friend Grady and spending an evening with grandboys Jackson and Grayson. The funniest line of the night was 3 year old Jackson telling his grandmother that we couldn't play air hockey because it would be too loud for sleeping Grayson! While I thought that our move to Seattle was more for Tom to be near "action" I know now that it has been important for me, too. I love being with the grandchildren and how they make me feel.
God is good and I praise Him daily for His faithfulness and provision. I love seeing Him in the little things of life and don't want to miss any of it. I know there are many who uphold us in prayer and I know it's making a difference. It feels good to write again.
For 40 years Tom and I have willingly done what was important to the other person. If one of us really wanted to do something, the other went along unless there was a really good reason. That has changed and it's taking some adjusting attitude. One night our flock group was getting together and I had REALLY been looking forward to it but Tom said he didn't feel well and didn't want to go. To my way of thinking he was using how he felt as an excuse and just didn't want to go. I called our friends to say we wouldn't be there and that Tom as being a "crabby old man". As soon as the words were out of my mouth I regretted them but it took several days of seeking God's help and wisdom to understand what was going on between us and within myself. I've been spoiled. Tom has always taken such good care of me and I miss it. But then the very next day I was sitting in the porch swing rocking a sleeping Maximus. I reached for a pillow to put behind my head but it fell to the floor and I couldn't get it without disturbing M. Tom must have been watching through the window because here he came with a pillow and gently put it behind my head and gave me a gentle touch on my cheek. I know that Tom has all he can deal with and have decided that I will continue to invite him to participate and do things but the choice is his and I WILL NOT resent his saying "no". My goal right now is to be as supportive as I can be and allow him to make his own decisions--to be his wife and not his mother.
Last weekend we took the RV for an overnight to Oak Harbor to visit longtime friends. One of the best things was the way Norm spent talking with Tom one on one. He got Tom to communicate more than he's done in a long time. They both have health issues and were able to speak very openly with each other. It was a rare time and we left feeling very thankful for our time with them.
Last week Tom and I took Maximus to the zoo with our daughter Kylisa and he two boys. We were on the go for 2 hours and walking much of that time. Tom amazes me. He says he doesn't think he can walk very far and then he surprises us both. He enjoyed the animals. The giraffes were being very affectionate with each other rubbing their necks against each other and their faces. Tom wrote on his board: "They're necking!" Made us both laugh.
I've been on a 3 game winning streak in cribbage but today Tom is back in the winning circle. He's also back to doing jigsaw puzzles.
His biggest challenge continues to be managing saliva. We're hopeful that the doctor we're seeing in September will be able to help--wish it was sooner.
Kirstin and Yura took the boys to Lopez Island for the weekend with friends. While they were gone I had a great time tearing the kitchen apart and reorganizing all the cupboards. Kirstin is amazing at organizing other people but, like most of us, has found it hard to organize herself. She had given me permission to do whatever I wanted with it. I kept thinking I should stop but once I got going I just kept going. I said they would either love me or say that they would never leave me home alone again. They liked it! What a fun gift to give them.
I kept hoping that their chickens would be gone while they were gone but each day I got up and they had survived the night--phooey! I am still jealous of the real estate they have been given. I have to laugh when I think of growing up on a chicken farm where we had thousands of chickens and now here I am living with 2 more. I'm sure there's humor in there somewhere.
Other big treats were baking cookies with Hunter and his friend Grady and spending an evening with grandboys Jackson and Grayson. The funniest line of the night was 3 year old Jackson telling his grandmother that we couldn't play air hockey because it would be too loud for sleeping Grayson! While I thought that our move to Seattle was more for Tom to be near "action" I know now that it has been important for me, too. I love being with the grandchildren and how they make me feel.
God is good and I praise Him daily for His faithfulness and provision. I love seeing Him in the little things of life and don't want to miss any of it. I know there are many who uphold us in prayer and I know it's making a difference. It feels good to write again.
Tuesday, July 21, 2009
We are moved
Phew! The move is done and Sports Camp is finished and Tom and I are settling in and my brain feels like it's holding way too much stuff 'cause I just haven't had the energy/discipline to sit and write. It's amazing to me how thoughts accumulate. It's a good reminder just how much good therapy and release this blog spot gives me. So let's back up. . . . .
The week prior to July 11th was packing week. I still can't believe how much stuff we still have after several downsizings. It's also very freeing to realize how little of it is of much importance. The most fun has been when one of our children has expressed interest in something and we can give it to them. Then when we visit in their homes we get to enjoy THEM enjoying stuff we have enjoyed over the years. Saturday, July 11th was a warm, okay, HOT day. We rented a UHaul and hired 2 moving men to help us. Our children were also there to help and the move really went pretty smooth. The challenge was getting the boxes to the correct destinations--Kirstin's, storage or Kylisa's (for garage sale later).
The morning of the move I broke down in tears in the shower thinking that life as we had known it was now over and would never be the same and how would it all work. I believe God spoke to me and told me that every day we get up life is new and will never be the same. I had to agree and very quickly got over my panicky moment. Later that night Kirstin, Yura and I had dinner together. Kirstin and I had a good opportunity to talk and she expressed much the same panicky thoughts. It was good to talk it through and to agree that we would work hard to keep good lines of communication open. If something is bothering one of us and it has to do with the other we will share it. After those moments of anxious thoughts all seems to be going well. We are enjoying being close to our family. Tom especially looks forward to hanging out with Kemp in his new workshop. The first morning we woke up to the sounds of two year old Maximus' laughter--best sound in the world.
Last week was hard but good. It was hard for Tom to have me gone every night--didn't get home till 10:00 after camp each night. I'm not quite sure what I was thinking scheduling the move for the weekend before sports camp but now that it's done it's nice not to have to think about it any more. Camp went very well. I had great assistants. Two girls accepted Jesus as their Savior and Lord--a definite highlight that makes all the exhaustion worth it.
Tom has had very mixed days. He's expressed frustration can't talk, can't eat, can't drink" is what he wrote one day. At other times he is content. He is still beating me at cribbage. Together we are enjoying talking about and sharing
our footloose and carefree (kind of) new life.
The last few days I have been finishing unpacking and organizing AND catching up on rest. Tomorrow I will be back in the office hoping to work out a schedule that will work for all. Yesterday I was determined to begin walking with the hope of walking at least 5 out of 7 days. I finally headed to Greenlake about 6:30 pm and walked for about an hour but only covered about 2/3 of the 3 mile walk--that's my best guess and today best laid plans have taken a back seat to spending time with Kylisa and her boys. Enjoyed hanging out in her back yard with water and mud and lots of balls.
While walking yesterday I listened to a podcast. Ravi Zacharias is a wonderful speaker. He talked about looking through a person rather than at them; looking through a situation rather than at it. Interesting thought. When we look at a person we only see what the eyes can take in. When we look through them we see from God's perspective--His purpose and plan for their life. When we look at a situation we only see the problem or difficulty or pain. When we look through it we again see it from God's perspective--how He is working through it and how it will bring Him glory. That's not a very good summary and I don't know if it makes sense--I just know that yesterday the message was an encouragement.
So life is over as we have known it and will never be the same. And that's not a bad thing. What is the same is who we trust with our lives and that's all that really matters. He is faithful and trust worthy. We're in good hands.
The week prior to July 11th was packing week. I still can't believe how much stuff we still have after several downsizings. It's also very freeing to realize how little of it is of much importance. The most fun has been when one of our children has expressed interest in something and we can give it to them. Then when we visit in their homes we get to enjoy THEM enjoying stuff we have enjoyed over the years. Saturday, July 11th was a warm, okay, HOT day. We rented a UHaul and hired 2 moving men to help us. Our children were also there to help and the move really went pretty smooth. The challenge was getting the boxes to the correct destinations--Kirstin's, storage or Kylisa's (for garage sale later).
The morning of the move I broke down in tears in the shower thinking that life as we had known it was now over and would never be the same and how would it all work. I believe God spoke to me and told me that every day we get up life is new and will never be the same. I had to agree and very quickly got over my panicky moment. Later that night Kirstin, Yura and I had dinner together. Kirstin and I had a good opportunity to talk and she expressed much the same panicky thoughts. It was good to talk it through and to agree that we would work hard to keep good lines of communication open. If something is bothering one of us and it has to do with the other we will share it. After those moments of anxious thoughts all seems to be going well. We are enjoying being close to our family. Tom especially looks forward to hanging out with Kemp in his new workshop. The first morning we woke up to the sounds of two year old Maximus' laughter--best sound in the world.
Last week was hard but good. It was hard for Tom to have me gone every night--didn't get home till 10:00 after camp each night. I'm not quite sure what I was thinking scheduling the move for the weekend before sports camp but now that it's done it's nice not to have to think about it any more. Camp went very well. I had great assistants. Two girls accepted Jesus as their Savior and Lord--a definite highlight that makes all the exhaustion worth it.
Tom has had very mixed days. He's expressed frustration can't talk, can't eat, can't drink" is what he wrote one day. At other times he is content. He is still beating me at cribbage. Together we are enjoying talking about and sharing
our footloose and carefree (kind of) new life.
The last few days I have been finishing unpacking and organizing AND catching up on rest. Tomorrow I will be back in the office hoping to work out a schedule that will work for all. Yesterday I was determined to begin walking with the hope of walking at least 5 out of 7 days. I finally headed to Greenlake about 6:30 pm and walked for about an hour but only covered about 2/3 of the 3 mile walk--that's my best guess and today best laid plans have taken a back seat to spending time with Kylisa and her boys. Enjoyed hanging out in her back yard with water and mud and lots of balls.
While walking yesterday I listened to a podcast. Ravi Zacharias is a wonderful speaker. He talked about looking through a person rather than at them; looking through a situation rather than at it. Interesting thought. When we look at a person we only see what the eyes can take in. When we look through them we see from God's perspective--His purpose and plan for their life. When we look at a situation we only see the problem or difficulty or pain. When we look through it we again see it from God's perspective--how He is working through it and how it will bring Him glory. That's not a very good summary and I don't know if it makes sense--I just know that yesterday the message was an encouragement.
So life is over as we have known it and will never be the same. And that's not a bad thing. What is the same is who we trust with our lives and that's all that really matters. He is faithful and trust worthy. We're in good hands.
Wednesday, July 8, 2009
Can't sleep
I can't sleep. It's 1:00 am and my brain is on overload thinking of all that needs to happen for this move on Saturday. I'm having to decide what to take with us, what to get rid of and what to put in storage. It's the storage part that is making me crazy. There's an spoken reality to it that I can't even talk about now. In the midst of this disease it seems as though it will be like what it is today forever and we will just live with it and that's okay but then you read about the disease and they keep saying it's progressive and I just want it to stop!
The last few days I have been so on the go that I haven't stopped to spend much time in God's word and to listen for what He is saying and I can really feel it. Just before signing on here I read a devotion that comes to my email and it was a good reminder of how dependent we are on Him. It comes from Adrian Rogers.
Dependence on God - a Witness of His Power
BIBLE MEDITATION:2 Corinthians 4:7 - "But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us."
DEVOTIONAL THOUGHT:If you’re like most people, you don’t realize your dependency on God until you’re burned out from stress — either self-induced or caused by circumstances beyond your control. Why is that? Paul says it’s because we are fragile, but he doesn’t stop there. He says that God made us this way so that His power may be known through us! Maybe someone told you, “Oh, just tie a knot and hang on!” Sometimes God wants us to let go of the rope because it is keeping us tied down to our destructive habits. We are totally dependent on God so that the love of His Son may be made known to the world.
ACTION POINT: Get a piece of rope and tie a knot in it. Let it sit on your desk this week as a reminder that God is more than just a knot at the end of the rope; He is the Savior of the World!
Earlier today I took my car in to be serviced and then took a shuttle back to Kirstin's house. The driver turned out to be a Christian who asked about our life and when I told him what was happening he said he would be praying. I am so thankful for all who are so faithful to pray.
Something to be thankful for is the yeast infection Tom's body has been fighting seems to be on its way out! YEAH! It's really played havoc with him and makes his throat burn. Hopefully it will clear up completely and stay away!
OK, I'm going to go back to bed and hopefully fall asleep soon. I just don't want to think anymore--thoughts in the middle of the night can be so confusing.
The last few days I have been so on the go that I haven't stopped to spend much time in God's word and to listen for what He is saying and I can really feel it. Just before signing on here I read a devotion that comes to my email and it was a good reminder of how dependent we are on Him. It comes from Adrian Rogers.
Dependence on God - a Witness of His Power
BIBLE MEDITATION:2 Corinthians 4:7 - "But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us."
DEVOTIONAL THOUGHT:If you’re like most people, you don’t realize your dependency on God until you’re burned out from stress — either self-induced or caused by circumstances beyond your control. Why is that? Paul says it’s because we are fragile, but he doesn’t stop there. He says that God made us this way so that His power may be known through us! Maybe someone told you, “Oh, just tie a knot and hang on!” Sometimes God wants us to let go of the rope because it is keeping us tied down to our destructive habits. We are totally dependent on God so that the love of His Son may be made known to the world.
ACTION POINT: Get a piece of rope and tie a knot in it. Let it sit on your desk this week as a reminder that God is more than just a knot at the end of the rope; He is the Savior of the World!
Earlier today I took my car in to be serviced and then took a shuttle back to Kirstin's house. The driver turned out to be a Christian who asked about our life and when I told him what was happening he said he would be praying. I am so thankful for all who are so faithful to pray.
Something to be thankful for is the yeast infection Tom's body has been fighting seems to be on its way out! YEAH! It's really played havoc with him and makes his throat burn. Hopefully it will clear up completely and stay away!
OK, I'm going to go back to bed and hopefully fall asleep soon. I just don't want to think anymore--thoughts in the middle of the night can be so confusing.
Saturday, July 4, 2009
Back from Oregon
Just back from celebrating the 4th with friends on Whidbey Island. It was good being with friends. It's hard watching Tom--how this enemy of ours has robbed him--free, laugh filled conversation, fellowship over a shared meal, long walks on the beach. Something else is how much we have enjoyed each other's touch and now touch often bothers him. I long to just hold him but he's not comfortable with that--I greive that lost greatly. I think back to a year ago being at the same place with many of the same people and how different it is this year--how quickly life changes. Tonight we will be home just enjoying being together.
Yesterday we spent the day at Kirstin's caring for Moose while Kirstin and Yura finished painting their new bedroom. I cannot stop being grateful for the gift they are giving us. The model of multiple generations living together is such an old one and already I am starting to see the precious value of it. I've had many emotions in getting ready for this but after yesterday I feel nothing but anticipation of something very good. They are doing a wonderful job of making us feel welcome--simple things like clearing space for us and positive talk of our lives together. There are things none of us can bring ourselves to say about this move. We are all just embracing it as a way to make Tom's life the very best. May God help us to do just that.
Last evening Kylisa came over and we began packing. Tom and I have moved many times and it's never overwhelmed me before but without Kylisa last night I don't know where I would have begun. In fact, before she came I couldn't see that we had much to do--I know better now. She was so good at giving direction and taking charge. I am so thankful for these children who have grown into such amazing adults, who have stepped in to take charge and give such loving care at this time in our lives. Tom and I both thank God for the gift of each one.
Our vacation to Oregon was fun. It was great having grandson Hunter with us--even though he takes GREAT delight in scaring his ol' granny! I tell him he is going to be sorry someday when I have a heart attack over one of his scares--he just laughs and plans his next forray. It was great b eing with the Phillips and I am thankful for George taking the time to get Tom to "talk" with him.
One of Tom's favorite memories is visiting the Flavel House in Astoria--built in 1885 it is such a beautiful old house and such a good lesson in history. We also spent an afternoon in Seaside. When the walk became more than Tom could do our friends suggested a wheelchair. I didn't know how Tom would react but he was okay with it and we were able to keep going all the way to the beach. I'm glad he was receptive to it BUT it's such a reminder of how much stamina he has lost--something else this enemy has taken. God give us strength to face whatever comes and to stay focused on today alone. We also visited and enjoyed the Tillamook Cheese Factory--but again it centered around food! All I can say is that Tom is amazing to be so uncomplaining!
Yesterday we spent the day at Kirstin's caring for Moose while Kirstin and Yura finished painting their new bedroom. I cannot stop being grateful for the gift they are giving us. The model of multiple generations living together is such an old one and already I am starting to see the precious value of it. I've had many emotions in getting ready for this but after yesterday I feel nothing but anticipation of something very good. They are doing a wonderful job of making us feel welcome--simple things like clearing space for us and positive talk of our lives together. There are things none of us can bring ourselves to say about this move. We are all just embracing it as a way to make Tom's life the very best. May God help us to do just that.
Last evening Kylisa came over and we began packing. Tom and I have moved many times and it's never overwhelmed me before but without Kylisa last night I don't know where I would have begun. In fact, before she came I couldn't see that we had much to do--I know better now. She was so good at giving direction and taking charge. I am so thankful for these children who have grown into such amazing adults, who have stepped in to take charge and give such loving care at this time in our lives. Tom and I both thank God for the gift of each one.
Our vacation to Oregon was fun. It was great having grandson Hunter with us--even though he takes GREAT delight in scaring his ol' granny! I tell him he is going to be sorry someday when I have a heart attack over one of his scares--he just laughs and plans his next forray. It was great b eing with the Phillips and I am thankful for George taking the time to get Tom to "talk" with him.
One of Tom's favorite memories is visiting the Flavel House in Astoria--built in 1885 it is such a beautiful old house and such a good lesson in history. We also spent an afternoon in Seaside. When the walk became more than Tom could do our friends suggested a wheelchair. I didn't know how Tom would react but he was okay with it and we were able to keep going all the way to the beach. I'm glad he was receptive to it BUT it's such a reminder of how much stamina he has lost--something else this enemy has taken. God give us strength to face whatever comes and to stay focused on today alone. We also visited and enjoyed the Tillamook Cheese Factory--but again it centered around food! All I can say is that Tom is amazing to be so uncomplaining!
Tuesday, June 23, 2009
Tom got his swing
Phew! It's a lot of work getting ready to go on vacation. Tomorrow we leave for Seaside, Oregon for a week. We are both looking forward to it. Tom is especially animated over it. It will be great having Hunter with us--he will keep us very entertained with all his antics! We'll also have some Sorry tournaments and maybe even teach him cribbage.
Sunday was very special. Our children gave Tom a porch swing and had it all set up at Kirstin's when we arrived. He loved sitting in it. He wrote to his friend on email that he was going to enjoy watching the neighborhood from it when we move in. I can't wait to sit and read to grandboys while we swing--if Tom will share. He also got his Viking hat--see pictures! I always enjoy hearing from him when we leave after being with our family and hearing how much he loves them and loves being with them.
Monday Tom was especially talkative with his white board. One thing he shared was that he had had a nightmare the night before about the surgical procedure that has been proposed to separate his wind pipe and esophagus. He said he did not want to have it done and he didn't even want to go to the doctor's appointment to hear more about it. His words were, "I want there to be some of me left." I really understood what he was saying and I was so happy to hear him taking charge. It's like he's come out of this fog--I think it's the fog of denial that set in with hearing the diagnosis. He's much clearer thinking. I can even see it in his eyes. Today he asked about the medications I am giving him. Up until now he has just sat back and let me make the decisions--and that's been hard because it's HIS life but he just hasn't wanted to talk about it. Today he made some decisions about the medications he is taking and I'm sure it must have felt good to do that.
Today he drove himself to the barber and then stopped by our bank. This is the bank where Tom would often stop by just to have a cup of coffee and chat with "his girls." When he walked in he said that he was surrounded by "his girls" who gave him hugs and told him how much they have missed seeing him. They had sent him a card that had been returned to them because of a wrong address so they gave him the card in person. Here are a few of the comments: "I miss seeing your smile and kind personality and our 'Christian talks'." "Sure miss our visits over coffee at the bank and your wonderful smile." "Tom, you are a person who has brightened our day with just stoping by." "Thank you for blessing our branch with your smile and spirit when you came in to have coffee."
What a boomerang joy! Tom has blessed them with his smile, his kind words and his presence. They have blessed him with their hugs and words of encouragement and love. Today is a memory Tom will long treasure the memory of today.
It's amazing the affect Tom's bright spirit and "take charge" attitude is having on me. I feel SO ALIVE and filled with joy. There are times when it feels heavy, like carrying a weight but not right now. I feel light and can't think of any other way to say it other than ALIVE. And, oh, so in love with Tom!
Sunday was very special. Our children gave Tom a porch swing and had it all set up at Kirstin's when we arrived. He loved sitting in it. He wrote to his friend on email that he was going to enjoy watching the neighborhood from it when we move in. I can't wait to sit and read to grandboys while we swing--if Tom will share. He also got his Viking hat--see pictures! I always enjoy hearing from him when we leave after being with our family and hearing how much he loves them and loves being with them.
Monday Tom was especially talkative with his white board. One thing he shared was that he had had a nightmare the night before about the surgical procedure that has been proposed to separate his wind pipe and esophagus. He said he did not want to have it done and he didn't even want to go to the doctor's appointment to hear more about it. His words were, "I want there to be some of me left." I really understood what he was saying and I was so happy to hear him taking charge. It's like he's come out of this fog--I think it's the fog of denial that set in with hearing the diagnosis. He's much clearer thinking. I can even see it in his eyes. Today he asked about the medications I am giving him. Up until now he has just sat back and let me make the decisions--and that's been hard because it's HIS life but he just hasn't wanted to talk about it. Today he made some decisions about the medications he is taking and I'm sure it must have felt good to do that.
Today he drove himself to the barber and then stopped by our bank. This is the bank where Tom would often stop by just to have a cup of coffee and chat with "his girls." When he walked in he said that he was surrounded by "his girls" who gave him hugs and told him how much they have missed seeing him. They had sent him a card that had been returned to them because of a wrong address so they gave him the card in person. Here are a few of the comments: "I miss seeing your smile and kind personality and our 'Christian talks'." "Sure miss our visits over coffee at the bank and your wonderful smile." "Tom, you are a person who has brightened our day with just stoping by." "Thank you for blessing our branch with your smile and spirit when you came in to have coffee."
What a boomerang joy! Tom has blessed them with his smile, his kind words and his presence. They have blessed him with their hugs and words of encouragement and love. Today is a memory Tom will long treasure the memory of today.
It's amazing the affect Tom's bright spirit and "take charge" attitude is having on me. I feel SO ALIVE and filled with joy. There are times when it feels heavy, like carrying a weight but not right now. I feel light and can't think of any other way to say it other than ALIVE. And, oh, so in love with Tom!
Thursday, June 18, 2009
Ordinary and simple living
Ordinary day. Simple living. These are good. We're in an interesting place right now. We've learned to accept the changes to Tom's body and the impact they have had on our lives. We're in a routine with the feedings. Tom is using the small white board often to "talk". We're looking forward to the "talk box" being delivered--hopefully soon. Tom continues to enjoy putting puzzles together. Today 2 "old" friends stopped by for a 3 way cribbage game. Tom won all three games! The man gets amazing cards--and knows what to do with them.
With any spare time I am sorting out and getting ready for our move to Seattle. Even in such a small space as our apartment it's amazing how much STUFF there is. It's a good process--freeing.
A good thought for the day:
God doesn't change me to love me.
God loves me to change me.
With any spare time I am sorting out and getting ready for our move to Seattle. Even in such a small space as our apartment it's amazing how much STUFF there is. It's a good process--freeing.
A good thought for the day:
God doesn't change me to love me.
God loves me to change me.
Monday, June 15, 2009
Not the day we expected
This was not what we had planned for today! This morning while giving Tom his meds through his feeding tube the tube got blocked. While trying to unblock it the tube sprung a bubble in an apparent weak spot. Back to finding out who would handle a tube problem--call #4 said we should go to emergency which we did. Arrived about 9:30. The doctor couldn't get it unblocked either so he sent Tom to radiology which put the tube in and they replaced the whole tube. It was very painful because Tom is just getting over an infection at the tube site--OUCH! We finally got home at 4:00. A long day but it's good that Tom's tube will be in good shape when we take off for a few days next week!
Had a great time camping with our RV friends/home fellowship group at Thunderbird--a camp ground near Monroe. It was nice not to have to drive too far but still get away and enjoy some RV time. The hard part is that when we get together much of our time is spent talking and eating--the two activities that are the most difficult for Tom. He was glad we went and it was a good practice run before we take off on our own for the Oregon coast. It's just so hard to know how much he wants to interact but it's so much work. Hoping the "talk box" will help AND that it comes soon. We're excited that our grandson Hunter is going to go to Oregon with us AND that our friends, George, Robin and Gabby will join us there.
One of the most memorable moments for me this weekend was the time I spent opening my Bible. There was a bookmark in it that I remember seeing in the past but don't remember reading it. What I read was so right on for where we are right now. And then to top it off, it was stuck in at Psalm 143 and when I read THAT Psalm I knew I had found exactly what I need for this time in life. I made some notes that I want to keep, thoughts that struck me as I read these words of David from so long ago. I don't want to forget how God spoke to me and encouraged me. The words in blue are my words in response to the words from the Bible.
1 Hear my prayer, O Lord; listen to my plea! Answer me because you are faithful and righteous.
Thank you for the assurance that you do listen and will hear me when I come to you. You are faithful at all times--even when I don't understand.
2 Don't bring your servant to trial! Compared to you, no one is perfect.
I DON'T LIKE THIS!!!! I know I am not up to this trial in my own power. I'm so full of imperfection next to your perfection.
3 My enemy has chased me. He has knocked me to the ground. He forces me to live in darkness like those in the grave.
ALS, FEAR, ANXIETY, IMPATIENCE are my enemies.
4 I am losing all hope; I am paralyzed with fear.
The paralyzing anxiety I felt in the grocery store when even deciding on what to get for lunch was totally overwhelming. The memory of wanting to scream as loud as I could haunts me. The times it feels like I have been punched in the stomach and it's hard to catch my breath.
5 I remember the days of old. I ponder all your great works. I think about what you have done.
I remember all the times you've shown up in my life, all the ways you have worked in the past. Thank you that we have those times TOGETHER--they bring assurance of how You work and how much you care.
6 I reach out for you. I thirst for you as parched land thirsts for rain.
As never before, I hunger and thirst for YOU in the midst of this trial. In "easy" times it's easy to go my own way. In the "hard" times it's hard to stay away from You.
7 Come quickly, LORD, and answer me, for my depression deepens. Don't turn away from me, or I will die.
Without YOU all hope would die. What do people do who don't have YOU--where do they go, who do they lean on? I don't ever want to experience the absence of YOU in my life. You are my only hope.
8 Let me hear of your unfailing love to me in the morning, for I am trusting you. Show me where to walk, for I have come to you in prayer.
Your love and mercy ARE new every morning. Yesterday is a memory and a reminder of your faithfulness. Tomorrow is a hope. Today I experience YOU and it's new every morning. Give me the strengh for THIS day. Help me to trust you THIS day. Help my unbelief when it shows up THIS day. Give me your direction and guidance and then help me to trust and obey THIS day. Tomorrow I'll ask you again!
9 Save me from my enemies, LORD; I run to you to hide me.
Bury me in your arms--the only place of total peace and protection--what an incredibly comforting picture.
10 Teach me to do your will, for you are my God. May your gracious Spirit lead me forward on a firm footing.
In Your will is where I long to live. Your gracious Spirit is full of patience so when it takes many tries to "get it," keep after me. Help me to stay on firm footing--to stay on the Rock.
11 For the glory of your name, O LORD, save me. In your righteousness, bring me out of this distress.
Yours is the glory--may all the honor be Yours for what You are doing. May You shine thru my life and show others Your love, care and faithfulness.
12 In your unfailing love, cut off all my enemies and destroy all my foes, for I am your servant.
The enemies of fear and anxiety, of ALS robbing me of my husband. In the midst of all that there is YOU.
This is what is written on the bookmark:
"Be at peace. Do not fear the changes of life. Rather look to them with full hope as they arise. God, whose very own you are, will deliver you out of them. he has kept you hitherto, and He will lead you safely through all things; and when you cannot stand it, God will bury you in His arms. Do not be afraid of what may happen tomorrow; the same everlastingFather who cares for you today will take care of you then and everyday. He will either shield you from suffering, or will give you unfailing strength to bear it. Be at peace and put aside all anxious thoughts and imaginations." (St. Francis de Sales)
Had a great time camping with our RV friends/home fellowship group at Thunderbird--a camp ground near Monroe. It was nice not to have to drive too far but still get away and enjoy some RV time. The hard part is that when we get together much of our time is spent talking and eating--the two activities that are the most difficult for Tom. He was glad we went and it was a good practice run before we take off on our own for the Oregon coast. It's just so hard to know how much he wants to interact but it's so much work. Hoping the "talk box" will help AND that it comes soon. We're excited that our grandson Hunter is going to go to Oregon with us AND that our friends, George, Robin and Gabby will join us there.
One of the most memorable moments for me this weekend was the time I spent opening my Bible. There was a bookmark in it that I remember seeing in the past but don't remember reading it. What I read was so right on for where we are right now. And then to top it off, it was stuck in at Psalm 143 and when I read THAT Psalm I knew I had found exactly what I need for this time in life. I made some notes that I want to keep, thoughts that struck me as I read these words of David from so long ago. I don't want to forget how God spoke to me and encouraged me. The words in blue are my words in response to the words from the Bible.
1 Hear my prayer, O Lord; listen to my plea! Answer me because you are faithful and righteous.
Thank you for the assurance that you do listen and will hear me when I come to you. You are faithful at all times--even when I don't understand.
2 Don't bring your servant to trial! Compared to you, no one is perfect.
I DON'T LIKE THIS!!!! I know I am not up to this trial in my own power. I'm so full of imperfection next to your perfection.
3 My enemy has chased me. He has knocked me to the ground. He forces me to live in darkness like those in the grave.
ALS, FEAR, ANXIETY, IMPATIENCE are my enemies.
4 I am losing all hope; I am paralyzed with fear.
The paralyzing anxiety I felt in the grocery store when even deciding on what to get for lunch was totally overwhelming. The memory of wanting to scream as loud as I could haunts me. The times it feels like I have been punched in the stomach and it's hard to catch my breath.
5 I remember the days of old. I ponder all your great works. I think about what you have done.
I remember all the times you've shown up in my life, all the ways you have worked in the past. Thank you that we have those times TOGETHER--they bring assurance of how You work and how much you care.
6 I reach out for you. I thirst for you as parched land thirsts for rain.
As never before, I hunger and thirst for YOU in the midst of this trial. In "easy" times it's easy to go my own way. In the "hard" times it's hard to stay away from You.
7 Come quickly, LORD, and answer me, for my depression deepens. Don't turn away from me, or I will die.
Without YOU all hope would die. What do people do who don't have YOU--where do they go, who do they lean on? I don't ever want to experience the absence of YOU in my life. You are my only hope.
8 Let me hear of your unfailing love to me in the morning, for I am trusting you. Show me where to walk, for I have come to you in prayer.
Your love and mercy ARE new every morning. Yesterday is a memory and a reminder of your faithfulness. Tomorrow is a hope. Today I experience YOU and it's new every morning. Give me the strengh for THIS day. Help me to trust you THIS day. Help my unbelief when it shows up THIS day. Give me your direction and guidance and then help me to trust and obey THIS day. Tomorrow I'll ask you again!
9 Save me from my enemies, LORD; I run to you to hide me.
Bury me in your arms--the only place of total peace and protection--what an incredibly comforting picture.
10 Teach me to do your will, for you are my God. May your gracious Spirit lead me forward on a firm footing.
In Your will is where I long to live. Your gracious Spirit is full of patience so when it takes many tries to "get it," keep after me. Help me to stay on firm footing--to stay on the Rock.
11 For the glory of your name, O LORD, save me. In your righteousness, bring me out of this distress.
Yours is the glory--may all the honor be Yours for what You are doing. May You shine thru my life and show others Your love, care and faithfulness.
12 In your unfailing love, cut off all my enemies and destroy all my foes, for I am your servant.
The enemies of fear and anxiety, of ALS robbing me of my husband. In the midst of all that there is YOU.
This is what is written on the bookmark:
"Be at peace. Do not fear the changes of life. Rather look to them with full hope as they arise. God, whose very own you are, will deliver you out of them. he has kept you hitherto, and He will lead you safely through all things; and when you cannot stand it, God will bury you in His arms. Do not be afraid of what may happen tomorrow; the same everlastingFather who cares for you today will take care of you then and everyday. He will either shield you from suffering, or will give you unfailing strength to bear it. Be at peace and put aside all anxious thoughts and imaginations." (St. Francis de Sales)
Tuesday, June 9, 2009
A Lundstedt Surprise
GREAT DAY! We all said after the doctor's visit that we were apprehensive about how the visit was going to go--were we surprised! Our doctor today was a specialist in respiration--Dr. Benditt at the UW. First, he was early! He was accompanied by his nurse and his assistant, Louie, who we met with last week. Kemp and Kylisa were with us. Next, he was so real--that's been our impression of all the UW doctors and specialists we have met--these people are tops in their field and they genuinely care--that was Tom's comment when we left today--they care and they listen!
After examining Tom, Dr B talked to us about his findings--he was surprised by Tom's strength in his arms and legs. The disease has really focused on the throat area and because of that he is a good candidate for a relatively new surgical procedure where they separate the wind pipe and the esophagus. This is to prevent choking and aspirating fluid into the lungs. He said that Tom could potentially even put food in his mouth--swallow it or not--since there wouldn't be any danger of choking on it or aspirating. (Kemp immediately piped up that crabbing season is right around the corner!) After discussing it we all agreed that seeing this new doctor was the next step.
We are also being referred to a gastroenterologist (and to think that 2 months ago I couldn't spell OR pronounce it) at the UW. We have really slipped through the cracks because Tom's tube was put in by hospital doctors so no one really claims responsibility for caring for the tube and I have had to be very persistent to get help with it. We are very confident that once we get a UW doc we'll be able to get the help we need. Yesterday the triage nurse at the gastro dr office we had been to before told me that I should loosen the disc around the tube myself! Are they kidding me?! I've never been shown how to do that and after trying briefly I know that's one thing I'm not making up. I feel like I've gotten a degreen in pharmacology--the gastro stuff I'm leaving to the experts!
We went into the appointment thinking about end of life decisions that need to be made. We left thinking we have a whole lot more living to do!!!!! I know we walked out with much more spring in our step.
Tom came up with a new definition for ALS tonight---A Lundstedt Surprise! I like it. The doctors agree that ALS is not attacking Tom as would be expected. We just think it's because of his Viking blood! He's tough. And I am thankful for that and for his sense of humor--oh, how he likes to make people laugh!
After examining Tom, Dr B talked to us about his findings--he was surprised by Tom's strength in his arms and legs. The disease has really focused on the throat area and because of that he is a good candidate for a relatively new surgical procedure where they separate the wind pipe and the esophagus. This is to prevent choking and aspirating fluid into the lungs. He said that Tom could potentially even put food in his mouth--swallow it or not--since there wouldn't be any danger of choking on it or aspirating. (Kemp immediately piped up that crabbing season is right around the corner!) After discussing it we all agreed that seeing this new doctor was the next step.
We are also being referred to a gastroenterologist (and to think that 2 months ago I couldn't spell OR pronounce it) at the UW. We have really slipped through the cracks because Tom's tube was put in by hospital doctors so no one really claims responsibility for caring for the tube and I have had to be very persistent to get help with it. We are very confident that once we get a UW doc we'll be able to get the help we need. Yesterday the triage nurse at the gastro dr office we had been to before told me that I should loosen the disc around the tube myself! Are they kidding me?! I've never been shown how to do that and after trying briefly I know that's one thing I'm not making up. I feel like I've gotten a degreen in pharmacology--the gastro stuff I'm leaving to the experts!
We went into the appointment thinking about end of life decisions that need to be made. We left thinking we have a whole lot more living to do!!!!! I know we walked out with much more spring in our step.
Tom came up with a new definition for ALS tonight---A Lundstedt Surprise! I like it. The doctors agree that ALS is not attacking Tom as would be expected. We just think it's because of his Viking blood! He's tough. And I am thankful for that and for his sense of humor--oh, how he likes to make people laugh!
Monday, June 8, 2009
Jam packed weekend
It amazes me how something that is affecting our emotions can have such a physical impact! For most of the weekend I had this feeling that there was a heaviness resting on me. It was like when you go to the dentist and they put that heavy, protective apron on you when they exray your teeth. It felt like I was carrying around that apron and it covered my whole body, even my head. I just couldn't get out from under it. I think that Barb is right when she says that the urge to scream was my brain getting its hands around the reality of what is going on--it helps to know that someone else has experienced it and can say that it will pass. While under it I was having doubts that I could carry on any of my responsibilities and felt like a river of anxiety was washing over me. Could I get my head out of the water or was I going to drown? Couldn't write in the middle of it--just kept getting pushed down.
Then yesterday--good timing! First, at church I was back with the kids for the first time in weeks and it felt sooooo good--just to be in their busy, free spirited world and have fun with them. Then it was off for a short stay at a baby shower for Tracey and Peter. Can't wait to see Tracey holding her little Gracie, the baby she's longed for for so long. AND to see her try to dress Gracie in ALL the outfits grandma Marilyn has had such fun buying! THEN it was off to Kemp and Angie's to see all the work they have done on their backyard, to hear plans for what they are going to do with the house AND to get in a 20 minute nap. THEN it was off to Carkeek Park for family photos! 17 of us ALL at the same place at the same time! We actually did it and hopefully we got some good shots. THEN it was back to Kirstin and Yura's for a barbecue to celebrate Katie's birthday AND for Tom to lay down. He said he enjoyed hearing all the family conversation swirling around him.
Tom seemed very somber for most of the day but when I would ask him how he felt he assured me he was fine and last night he said how much he enjoyed being with everyone. He loves his family so much--we couldn't ask for better! I love watching how each one cares for Tom in their own way.
In the midst of the day Kylisa asked me if the dentist's apron was still on and I was delighted to answer, no, it's hanging on the wall! Don't know when it was lifted but it sure felt good to have it gone.
The Sunday devotion really spoke to me. I'll share it.
Even there shall Thy hand lead me, and Thy right hand shall hold me. Psalm 139:10
Devotional thought:
"I've heard people say, "Pray for us that we'll hold out faithful to the end." I think I know what they mean, but I always smile. I picture Noah's ark, and I can see Noah and his wife and family. Rather than being on the inside, they're holding on to some slimy pegs on the outside of the ark. And Noah says to Mrs. Noah, "Honey, pray for methat I'll hold out faithful to the end." But God said to noah, "Come into the ark," and the same God that shut the water out, shut Noah in. Now Noah may have fallen down inside that ark, but he never fell out of it. It's not that wehold on to Him, but that He holds on to us."
What great assurance--it doesn't depend on me; it depends on the One I depend on!
Then yesterday--good timing! First, at church I was back with the kids for the first time in weeks and it felt sooooo good--just to be in their busy, free spirited world and have fun with them. Then it was off for a short stay at a baby shower for Tracey and Peter. Can't wait to see Tracey holding her little Gracie, the baby she's longed for for so long. AND to see her try to dress Gracie in ALL the outfits grandma Marilyn has had such fun buying! THEN it was off to Kemp and Angie's to see all the work they have done on their backyard, to hear plans for what they are going to do with the house AND to get in a 20 minute nap. THEN it was off to Carkeek Park for family photos! 17 of us ALL at the same place at the same time! We actually did it and hopefully we got some good shots. THEN it was back to Kirstin and Yura's for a barbecue to celebrate Katie's birthday AND for Tom to lay down. He said he enjoyed hearing all the family conversation swirling around him.
Tom seemed very somber for most of the day but when I would ask him how he felt he assured me he was fine and last night he said how much he enjoyed being with everyone. He loves his family so much--we couldn't ask for better! I love watching how each one cares for Tom in their own way.
In the midst of the day Kylisa asked me if the dentist's apron was still on and I was delighted to answer, no, it's hanging on the wall! Don't know when it was lifted but it sure felt good to have it gone.
The Sunday devotion really spoke to me. I'll share it.
Even there shall Thy hand lead me, and Thy right hand shall hold me. Psalm 139:10
Devotional thought:
"I've heard people say, "Pray for us that we'll hold out faithful to the end." I think I know what they mean, but I always smile. I picture Noah's ark, and I can see Noah and his wife and family. Rather than being on the inside, they're holding on to some slimy pegs on the outside of the ark. And Noah says to Mrs. Noah, "Honey, pray for methat I'll hold out faithful to the end." But God said to noah, "Come into the ark," and the same God that shut the water out, shut Noah in. Now Noah may have fallen down inside that ark, but he never fell out of it. It's not that wehold on to Him, but that He holds on to us."
What great assurance--it doesn't depend on me; it depends on the One I depend on!
Saturday, June 6, 2009
AHHHHHHHHHH!!!!!!!
And I thought we had a good night's sleep! Tom tells me he was up 4 times--I slept through it all. Even so I am physically spent today--feel totally wiped out! Went to the grocery store and had to keep taking deep breaths to keep from letting out a huge scream. The only thing that kept me from letting loose was the thought of having to deal with the after effects of it! Now that makes me chuckle--at the time it wasn't funny! Is it exhaustion, anxiety--what???? Hoping and praying this feeling does not last.
Tom is really looking forward to seeing the work Kemp did on his yard tomorrow. It's family picture day so we'll get to see the whole family in the same place at the same time--doesn't get much better than that.
I'm going to try taking a nap.
Tom is really looking forward to seeing the work Kemp did on his yard tomorrow. It's family picture day so we'll get to see the whole family in the same place at the same time--doesn't get much better than that.
I'm going to try taking a nap.
Friday, June 5, 2009
Katie is 19!
Answer to prayer--the respiratory guy called to say that the respiratory doctor wants to see Tom ahead of the July 28th appointment so Tuesday at 4:00 we'll meet him at UW. We also heard from Option Care--they will have the BiPap machine for us on Wednesday. The request for the talking machine (need to find out what they are actually called) has been sent to PA--hoping to hear back from them soon.
Tom has been busy tackling a new puzzle. I am missing his voice today--just want to hear him talk to me--to share like we have for all these years, taking it so much for granted. I'm also missing his strong arms around me.
Old friends who we had not seen in a very long time stopped by yesterday and were a huge encouragement. It was fun to reminisce (sp??? where is spell check when you need it???) It was a good reminder to not put off spending time with special people.
Today we celebrated granddaughter Katie's 19th birthday at Queen Mary's Tea Room in Seattle--3 generations together. What joy she brings to our family!
It's hard to write tonight for some reason. This week I have been waking up feeling like we are in the eye of the storm--turbulance behind and great uncertainty ahead. Then I realized that it was really God's peace in the midst of this trial and it really is new every morning. While I have every confidence it will remain throughout it really is fresh and new with each day--kind of a surprise that it's still there, a sense of awe and wonder that such a thing can be--that He cares so much and is so good to be so faithful even to us.
Tom has been busy tackling a new puzzle. I am missing his voice today--just want to hear him talk to me--to share like we have for all these years, taking it so much for granted. I'm also missing his strong arms around me.
Old friends who we had not seen in a very long time stopped by yesterday and were a huge encouragement. It was fun to reminisce (sp??? where is spell check when you need it???) It was a good reminder to not put off spending time with special people.
Today we celebrated granddaughter Katie's 19th birthday at Queen Mary's Tea Room in Seattle--3 generations together. What joy she brings to our family!
It's hard to write tonight for some reason. This week I have been waking up feeling like we are in the eye of the storm--turbulance behind and great uncertainty ahead. Then I realized that it was really God's peace in the midst of this trial and it really is new every morning. While I have every confidence it will remain throughout it really is fresh and new with each day--kind of a surprise that it's still there, a sense of awe and wonder that such a thing can be--that He cares so much and is so good to be so faithful even to us.
Tuesday, June 2, 2009
Uff da!
It was a full day. Started off with a doctor's visit for me--followup on blood pressure meds and I am doing great--lower than it has been in a long time. YEAH! Talked to my doc about Tom's burning throat and white stuff on his tongue. She thought it could be thrush, a fungus infection. That could be the answer for the burning in Tom's throat. That would be fantastic! Got an appointment for a couple of hours later and Tom's doc concurred. New prescription to a pharmacy that already knows us on a first name basis!
THEN it was in to UW to see a respiratory doctor's assistant who ran a bunch of tests. We were with him for 2 hours. I told him I was surprised how much we liked UW med ctr. Had thought of it as a teaching hospital but have been treated extremely well and with great patience. He liked hearing that. He recommended a BiPap machine for Tom to help with breathing when he sleeps--a possible answer to better sleep! A cough assistance machine didn't work because of the paralysis in Tom's vocal cords. He is also going to move the resp. doctor appointment up from July 28th. Another answer to prayer! He gave us more material to read in prepartion for that visit. We have some decisions to make regarding ventilation down the road. I pray God will help us make good ones.
THEN we went to Kirstin's and met with Dee who is helping to design Kirstin and Yura's house to fit in 2 more people. She's amazing when it comes to arranging furniture and creative living--what a gift she is giving us.
THEN we went to Kylisa's to visit, play with the boys, share a dinner and pick up food Kylisa has fixed for her mom.
Arrived home to find flowers waiting for us. Thank you D&G! What an amazing thing to be cared for and loved.
NOW we are home and ready to call it a night. Uff da!
THEN it was in to UW to see a respiratory doctor's assistant who ran a bunch of tests. We were with him for 2 hours. I told him I was surprised how much we liked UW med ctr. Had thought of it as a teaching hospital but have been treated extremely well and with great patience. He liked hearing that. He recommended a BiPap machine for Tom to help with breathing when he sleeps--a possible answer to better sleep! A cough assistance machine didn't work because of the paralysis in Tom's vocal cords. He is also going to move the resp. doctor appointment up from July 28th. Another answer to prayer! He gave us more material to read in prepartion for that visit. We have some decisions to make regarding ventilation down the road. I pray God will help us make good ones.
THEN we went to Kirstin's and met with Dee who is helping to design Kirstin and Yura's house to fit in 2 more people. She's amazing when it comes to arranging furniture and creative living--what a gift she is giving us.
THEN we went to Kylisa's to visit, play with the boys, share a dinner and pick up food Kylisa has fixed for her mom.
Arrived home to find flowers waiting for us. Thank you D&G! What an amazing thing to be cared for and loved.
NOW we are home and ready to call it a night. Uff da!
Sunday, May 31, 2009
Thankful
No wonder we feel such strength each day--people keep telling us of more people who are praying for us. We are humbled and awed by the prayers of friends and family and amazed at the prayers of strangers--tied together by our common faith in Jesus Christ. We don't need to know each other when He is our common Savior and Lord to be sisters and brothers. We are so thankful for each prayer lifted on our behalf.
Thankfulness seems to be the theme of the day. I've gone back to reading Boomerang Joy. Barbara has a chapter called "Give Thanks." She is so right when she writes, "Why do we take our blessings for granted until they are removed from us? Start today by being grateful for the tiniest things: water to drink, a moment to rest, the color of a flower or sunset or bird. A piece of bread. A song on the radio. Keep looking for sights, smells, sounds, that make you feel pleasure. Write them down. Let's decide to be thankful and encourage one another to cultivate grateful hearts. Remember, no trial or trouble lasts forever. Keep following God, and you will begin to understand that He uses trials to strengthen you. And also remember, the truest truth is that God is thankful for you. He gave his Son to reclaim your life. He invites you into the joy of salvation. That's an awful lot to be thankful for right there. And something else to be thankful for? The fact that you are here to be thankful!"
Ever since Tom was diagnosed it's been the "little things" that have meant so much. There is a rhody in bloom on the route that I walk each morning that is the most beautiful rhody I've ever seen--I get such joy just seeing it every day. Flowers have more beauty this year than ever before. Tom's gentle touches have always made me feel loved--now even more. And when Tom cracks a joke I want the feeling to go on and on--I treasure it. Spending time with children and grandchildren, conversations with friends, every hug is priceless.
We are looking forward to two RV trips in June. Friends will be with us on both. Do you think it's possible the talking box will arrive before either one??? That would be an amazing answer to prayer.
Praise God that the sleeping medication seems to be helping Tom sleep better. Now I need to break my sleepless pattern--hopefully tonight I will be so tired we'll both get a good night.
Thankfulness seems to be the theme of the day. I've gone back to reading Boomerang Joy. Barbara has a chapter called "Give Thanks." She is so right when she writes, "Why do we take our blessings for granted until they are removed from us? Start today by being grateful for the tiniest things: water to drink, a moment to rest, the color of a flower or sunset or bird. A piece of bread. A song on the radio. Keep looking for sights, smells, sounds, that make you feel pleasure. Write them down. Let's decide to be thankful and encourage one another to cultivate grateful hearts. Remember, no trial or trouble lasts forever. Keep following God, and you will begin to understand that He uses trials to strengthen you. And also remember, the truest truth is that God is thankful for you. He gave his Son to reclaim your life. He invites you into the joy of salvation. That's an awful lot to be thankful for right there. And something else to be thankful for? The fact that you are here to be thankful!"
Ever since Tom was diagnosed it's been the "little things" that have meant so much. There is a rhody in bloom on the route that I walk each morning that is the most beautiful rhody I've ever seen--I get such joy just seeing it every day. Flowers have more beauty this year than ever before. Tom's gentle touches have always made me feel loved--now even more. And when Tom cracks a joke I want the feeling to go on and on--I treasure it. Spending time with children and grandchildren, conversations with friends, every hug is priceless.
We are looking forward to two RV trips in June. Friends will be with us on both. Do you think it's possible the talking box will arrive before either one??? That would be an amazing answer to prayer.
Praise God that the sleeping medication seems to be helping Tom sleep better. Now I need to break my sleepless pattern--hopefully tonight I will be so tired we'll both get a good night.
Thursday, May 28, 2009
It's the little things
What a great day! Tom saw the speech therapist this morning and tested out great on the hand held talking device. She was going to fax the request for a unit for Tom today. They say it will be 4-6 weeks to get it but we are praying for sooner. He actually enjoyed using it. I think he will have fun with it. I know his kids and grandkids will have fun programming phrases and voices! The first thing he tried typing in was "Takk for matt" (pronounced tock for mot) which is Swedish for "thank you for the food"--what Tom has always said at the end of a meal. It was funny to hear the machine say "tack for mat"! The first phrase he said he wanted put into it was "I love you"--that man sure knows how to rack up the points! That's something that has always been so easy for him to say--his smile still says it but it's fun to think of him "saying" it with a voice.
Next thing to be thankful for is the respiratory specialist calling to schedule his appointment for next Tuesday rather than waiting for July 28th.
Am also feeling extremely thankful for all the offers of help AND how easy it is becoming to accept them! God is teaching us alot--most of all how much He cares for us.
I recently wrote that words are not all that important--I was wrong! I so enjoy getting comments on the blog or hearing via email, cards and notes AND in person. Recently our bank teller shared how much she missed seeing Tom and asked how he was doing. She told me she had lost her husband several years ago. She's praying for us. Her words of care really touched me and encouraged me. It was fun to come home and tell Tom that his "girl friends" at the bank hadn't forgotten him and were looking forward to seeing him again. I told him, he needed to make the next deposit!
Next thing to be thankful for is the respiratory specialist calling to schedule his appointment for next Tuesday rather than waiting for July 28th.
Am also feeling extremely thankful for all the offers of help AND how easy it is becoming to accept them! God is teaching us alot--most of all how much He cares for us.
I recently wrote that words are not all that important--I was wrong! I so enjoy getting comments on the blog or hearing via email, cards and notes AND in person. Recently our bank teller shared how much she missed seeing Tom and asked how he was doing. She told me she had lost her husband several years ago. She's praying for us. Her words of care really touched me and encouraged me. It was fun to come home and tell Tom that his "girl friends" at the bank hadn't forgotten him and were looking forward to seeing him again. I told him, he needed to make the next deposit!
Sunday, May 24, 2009
a feeling
you ask what I am feeling--incredible sadness. But what lies within that sadness--I cannot, will not go there. If I stay there, rest there, wallow there I will not be any good for Tom. He needs me to be positive and up beat. He's always been that for me and I will not let him down--with the help of my Lord and my God we WILL stay as full of life as we can--we will enjoy every bit of life we have together for as long as we have life. I pray others will join me in celebrating life, not focusing on anything else. Celebrate Tom, remembering all the crazy, kooky things this man of mine has done to bring so much joy to those who know him. Just thinking about some of those times makes me smile. Maybe I will write some of them here but now I am tired--I feel better putting it on "paper"--easier to let it go somehow.
Strength for today
When I opened my Bible this morning I happened to turn to Isaiah where these words were underlined: "He gives power to those who are tired and worn out; he offers strength to the weak. Even youths will become exhausted, and young men will give up. But those who wait on the Lord will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint." It seemed God's words were meant for me. I count on His strength daily and He never fails. It made me wonder what I miss when I don't take the time to open His word.
Picked up Tom's perscription early. When I came back to pick Tom up for church he said he was too tired and just wanted to go back to bed. I asked him how he was doing and he wrote, "Mentally I am just fine." I asked how he was with his body and he wrote, "I'm learning to accept it." I got a small white board yesterday and he is using it a lot to communicate. He says he would prefer it to some high tech gadget. Later he wrote a really funny response to something I said that made me laugh really hard. He wrote, "I love to make you laugh!!" He's been doing that for 40 years. He'd better not stop now is what I say!
I don't like being without Tom at church--reminds me of our younger years when he travelled so much and often I went without him. It was always hard to see other couples sitting with each other and not have my Tom. Today I tried to turn it for the good and thanked God for the couple relationships and that they would remain strong.
I don't know how to respond when someone asks how I'm doing. Sometimes it feels like there should be a right answer and I don't know it. I think Tom and I are at a similar place--we're both learning to accept it for what it is. We're pretty simple thinkers--Tom and me. We don't really ask the why us or shake our fists--why not us and how can we be angry when we've been so incredibly blessed our whole lives. Lately I've been praying to see this from God's perspective--not there yet but I trust He has us in His hands and will use this for His good.
Hugs and a person's presence are still the most appreciated means of communicating care and support. Words are good but there's nothing that anyone can say that will change what is. I know it's hard to know what to say--I've tried to say the right thing many times when someone is hurting and always it seems that words fall short. We really can't understand exactly what someone else is feeling or experiencing because we all come into an experience with different histories/pasts/beliefs and those affect our present. What I find myself enjoying is hearing what is happening in other lives--it's a way of connecting with life--if that makes any sense. OK, now I'm getting into deeper thought and I'm ready to move on.
We spent some time with Kylisa and Chris, Jackson (almost 3) and Grayson (1) today. Tom enjoyed pitching the baseball to the boys and we both enjoyed watching their energy and enthusiasm. Oh, the joy of being family!
Picked up Tom's perscription early. When I came back to pick Tom up for church he said he was too tired and just wanted to go back to bed. I asked him how he was doing and he wrote, "Mentally I am just fine." I asked how he was with his body and he wrote, "I'm learning to accept it." I got a small white board yesterday and he is using it a lot to communicate. He says he would prefer it to some high tech gadget. Later he wrote a really funny response to something I said that made me laugh really hard. He wrote, "I love to make you laugh!!" He's been doing that for 40 years. He'd better not stop now is what I say!
I don't like being without Tom at church--reminds me of our younger years when he travelled so much and often I went without him. It was always hard to see other couples sitting with each other and not have my Tom. Today I tried to turn it for the good and thanked God for the couple relationships and that they would remain strong.
I don't know how to respond when someone asks how I'm doing. Sometimes it feels like there should be a right answer and I don't know it. I think Tom and I are at a similar place--we're both learning to accept it for what it is. We're pretty simple thinkers--Tom and me. We don't really ask the why us or shake our fists--why not us and how can we be angry when we've been so incredibly blessed our whole lives. Lately I've been praying to see this from God's perspective--not there yet but I trust He has us in His hands and will use this for His good.
Hugs and a person's presence are still the most appreciated means of communicating care and support. Words are good but there's nothing that anyone can say that will change what is. I know it's hard to know what to say--I've tried to say the right thing many times when someone is hurting and always it seems that words fall short. We really can't understand exactly what someone else is feeling or experiencing because we all come into an experience with different histories/pasts/beliefs and those affect our present. What I find myself enjoying is hearing what is happening in other lives--it's a way of connecting with life--if that makes any sense. OK, now I'm getting into deeper thought and I'm ready to move on.
We spent some time with Kylisa and Chris, Jackson (almost 3) and Grayson (1) today. Tom enjoyed pitching the baseball to the boys and we both enjoyed watching their energy and enthusiasm. Oh, the joy of being family!
Saturday, May 23, 2009
Good to be needed!
Last night when I poured the cans of Tom's food into the pump bag I noticed that the expiration date said May 10--and this is the 23rd! I just got 8 cases delivered this last week and they are already EXPIRED! How could the company be so careless??!! I lost sleep last night thinking about wondering if the very food Tom was receiving was harmful to him. AND it's a 3 day weekend--would anyone be there to answer my questions today? Got the answering service when I called and they said someone would call back soon. They did and said they would check it out. Got a second call from a very nice woman who said the "10" was the year, not the day! Now why didn't I think of that?!
Then at 8:00 pm I got Tom's meds ready to give to him and relized that I had forgotten to go to the pharmacy for one that had only one dose left--and they were closed BUT will reopen in the nick of time at 9:00 am--and I will be there. It's the perscription for controlling the saliva--not one to run out of. That's what I missed by taking a 4 HOUR nap today AND not looking at my list of to-do's!
Other than that it's been a quiet day. Oh, I DID beat Tom at cribbage--I'm on a two game winning streak--that's about as far as I can get the streaks to last! Tom is finishing another puzzle. We came home with some good ones yesterday--he sure knows what he likes--the ones with lots of color contrasts and no big spaces of all the same color. I'm starting to be able to pick them out. Oh, he just finished--except for the last piece--he always needs me to figure out where that piece goes. It's good to be needed!
Then at 8:00 pm I got Tom's meds ready to give to him and relized that I had forgotten to go to the pharmacy for one that had only one dose left--and they were closed BUT will reopen in the nick of time at 9:00 am--and I will be there. It's the perscription for controlling the saliva--not one to run out of. That's what I missed by taking a 4 HOUR nap today AND not looking at my list of to-do's!
Other than that it's been a quiet day. Oh, I DID beat Tom at cribbage--I'm on a two game winning streak--that's about as far as I can get the streaks to last! Tom is finishing another puzzle. We came home with some good ones yesterday--he sure knows what he likes--the ones with lots of color contrasts and no big spaces of all the same color. I'm starting to be able to pick them out. Oh, he just finished--except for the last piece--he always needs me to figure out where that piece goes. It's good to be needed!
Friday, May 22, 2009
Move is coming
It's Friday--almost a whole week has passed since I last wrote. Wednesday was our Awana awards night--lots of prep to get ready for it. It was definitely more hectic this year--the ol' brain just doesn't keep up with me--it used to be that my body didn't keep up with me--now it's both--what is the ME they're not keeping up with anyway??? Is it the soul part that recognizes it is separate and distinct from the mind and body? Interesting thought.
Last Saturday we spent the day with Kirstin, Yura, Kylisa and Chris. During our time together Kirstin said that they had talked about it and thought we should move in with them. They can see that we're going to need help in the months to come and wanted us closer. We talked about the pros and cons--Tom would have more activity to be a part of or just watch, we'd be closer to the UW medical center, Kemp is just a few blocks away, Tom could putter in the yard, Hunter and Moose would give their Far lots of love. We've been advised to find living space that is wheelchair accessible. Their house is very open and we can build a ramp to their porch if and when the time comes we need it. Cons would be more people in the house but they have assured us they're okay with that and want us to come. We are also going to have to be very honest and open with each other--not a bad thing to foster. We feel so incredibly blessed to have the children we do. Everyone is focused on doing what is the very best for Tom and this seems to be just that. Tom even said that he would like to get on the bus and go downtown Seattle--easy to do from their house.
A few things need to be finished at their house before we arrive. The kids are planning family work days to get it all done. Once again we will be downsizing--it's getting easier and easier. God has been good to make this such a gradual process for us from house to townhouse to apartment to Kirstin and Yura's house.
I've also talked with my pastor who is very supportive of my first call which is to care for Tom. I am hopeful that I can stay on in Children's Ministry but am holding it with an open hand waiting to see what God has in store. Right now we are gathering a group of people together to spread out responsibilities. I am blown away by the support and love that people are showing--it is very humbling and encouraging. It's very different to be on the receiving end. It's more comfortable to be on the giving side but I am learning to receive--I am very grateful.
The last two nights I have gotten more sleep but Tom is still up several times during the night. Sleep is a challenge. Tom can't take sleeping medication because he has to be alert if he gets up due to the feeing tube. The few nights in the beginning that he took something was like dealing with a drunken sailor--not fun. We both agreed it was better to do without.
It's a beautiful sunny day today. Tom wants to go to Target to look for more jigsaw puzzles. I'm hoping to get out for a long walk.
Last Saturday we spent the day with Kirstin, Yura, Kylisa and Chris. During our time together Kirstin said that they had talked about it and thought we should move in with them. They can see that we're going to need help in the months to come and wanted us closer. We talked about the pros and cons--Tom would have more activity to be a part of or just watch, we'd be closer to the UW medical center, Kemp is just a few blocks away, Tom could putter in the yard, Hunter and Moose would give their Far lots of love. We've been advised to find living space that is wheelchair accessible. Their house is very open and we can build a ramp to their porch if and when the time comes we need it. Cons would be more people in the house but they have assured us they're okay with that and want us to come. We are also going to have to be very honest and open with each other--not a bad thing to foster. We feel so incredibly blessed to have the children we do. Everyone is focused on doing what is the very best for Tom and this seems to be just that. Tom even said that he would like to get on the bus and go downtown Seattle--easy to do from their house.
A few things need to be finished at their house before we arrive. The kids are planning family work days to get it all done. Once again we will be downsizing--it's getting easier and easier. God has been good to make this such a gradual process for us from house to townhouse to apartment to Kirstin and Yura's house.
I've also talked with my pastor who is very supportive of my first call which is to care for Tom. I am hopeful that I can stay on in Children's Ministry but am holding it with an open hand waiting to see what God has in store. Right now we are gathering a group of people together to spread out responsibilities. I am blown away by the support and love that people are showing--it is very humbling and encouraging. It's very different to be on the receiving end. It's more comfortable to be on the giving side but I am learning to receive--I am very grateful.
The last two nights I have gotten more sleep but Tom is still up several times during the night. Sleep is a challenge. Tom can't take sleeping medication because he has to be alert if he gets up due to the feeing tube. The few nights in the beginning that he took something was like dealing with a drunken sailor--not fun. We both agreed it was better to do without.
It's a beautiful sunny day today. Tom wants to go to Target to look for more jigsaw puzzles. I'm hoping to get out for a long walk.
Friday, May 15, 2009
Talking machine not talking!
Picked up the loaner "talking" machine today but so far have not been able to get it working--screen does not respond to touch very well so we'll have to wait to see if there's more to it than we thought. The young woman who brought it to us is a delight and a blessing--so passionate about helping people. She's also a fellow believer and a real encourager.
It's a beautiful day--gotta love the sunshine. Tom took a nap on the deck. I took a snuggle nap with baby Grayson while Kylisa took Jackson to a birthday party. When they came back we tried out our new baseball and bat. Tom pitched, I caught and Jackson hit!
I read this in the new MDA/ALS magazine we've been given a subscription to:
"Quit thinking that ALS is a terminal disease, but rather an obstacle that you need to oversome. For anyone, I would say view your ALS as a gift. It has freed you of the everyday worry and stress that makes most miss the important things in life."
I was thinking last night about "Tom the Conqueror"--about how when he couldn't eat we overcame it with a feeding tube. Now he is losing his speech and we are overcoming it with a speaking device. We are praying that we can get that accomplished very soon. They say it takes at least a month to get the device we are hoping for--let's pray for it sooner.
It's a beautiful day--gotta love the sunshine. Tom took a nap on the deck. I took a snuggle nap with baby Grayson while Kylisa took Jackson to a birthday party. When they came back we tried out our new baseball and bat. Tom pitched, I caught and Jackson hit!
I read this in the new MDA/ALS magazine we've been given a subscription to:
"Quit thinking that ALS is a terminal disease, but rather an obstacle that you need to oversome. For anyone, I would say view your ALS as a gift. It has freed you of the everyday worry and stress that makes most miss the important things in life."
I was thinking last night about "Tom the Conqueror"--about how when he couldn't eat we overcame it with a feeding tube. Now he is losing his speech and we are overcoming it with a speaking device. We are praying that we can get that accomplished very soon. They say it takes at least a month to get the device we are hoping for--let's pray for it sooner.
Thursday, May 14, 2009
Tom is getting a "speaking" machine
Today we met with the Speech Therapist at UW. Deanna evaluated Tom's needs and showed us 3 different models of "speaking" machines (don't know what they're really called but I bet I'll find out!) Tom was drawn to the smaller hand held model. He will use a stylus to type in words or touch pre-programmed phrases and the machine will speak what he writes. It was pretty funny when it was programmed with a woman's voice. You can also program your own phrases. I'm a little nervous about what the kids and grandkids will come up with for their dad/Far! It will take a while to get the model Tom wants so Deanna suggested we might be able to borrow something from the MDA organization. We checked and they do have something we can borrow and I will pick it up tomorrow morning.
The hardest part of the day was hearing Tom question (as we left the appointment), "so my voice is dead meat?" He had different expectations of the meeting thinking he was going to be given ways to use his own voice. But he bounced back quickly and is resolved to make the most of this new technology.
Just read the following devotion that has challenged me:
May 13
BIBLE MEDITATION:"Give thanks unto the Lord, call upon His name, make known His deeds among the people."1 Chronicles 16:8
DEVOTIONAL THOUGHT:If you are a child of God, you ought to be able to thank God every moment of every day no matter what happens to you. Have you ever stopped to thank God for the water that you drink? Did you know that in some third world countries the majority of the population doesn't have reasonably pure drinking water? Millions of people die annually just from water-related diseases. If you wear a hearing aide, do you ever thank God for that? Some people wish they had a hearing aide. If you are a student in the midst of final exams, do you thank God that you have an exam to take? There are many who wish they could afford college. Do you thank God for your next breath?
ACTION POINT:Take whatever it is that looks like a trial in your life today and thank God for it! Thank Him every time the thought enters your mind to grumble or complain.
It's hard to thank God for ALS but I do thank God for the incredible closeness Tom and I are experiencing in the midst of it and for the support and love of family and friends.
The hardest part of the day was hearing Tom question (as we left the appointment), "so my voice is dead meat?" He had different expectations of the meeting thinking he was going to be given ways to use his own voice. But he bounced back quickly and is resolved to make the most of this new technology.
Just read the following devotion that has challenged me:
May 13
BIBLE MEDITATION:"Give thanks unto the Lord, call upon His name, make known His deeds among the people."1 Chronicles 16:8
DEVOTIONAL THOUGHT:If you are a child of God, you ought to be able to thank God every moment of every day no matter what happens to you. Have you ever stopped to thank God for the water that you drink? Did you know that in some third world countries the majority of the population doesn't have reasonably pure drinking water? Millions of people die annually just from water-related diseases. If you wear a hearing aide, do you ever thank God for that? Some people wish they had a hearing aide. If you are a student in the midst of final exams, do you thank God that you have an exam to take? There are many who wish they could afford college. Do you thank God for your next breath?
ACTION POINT:Take whatever it is that looks like a trial in your life today and thank God for it! Thank Him every time the thought enters your mind to grumble or complain.
It's hard to thank God for ALS but I do thank God for the incredible closeness Tom and I are experiencing in the midst of it and for the support and love of family and friends.
Wednesday, May 13, 2009
Tom the Conqueror
It's been a good day--very little reflux! YEAH! Kemp came over and spent most of the day with his dad. He has permission from work to work from our house on Wednesdays so he can spend that time with Tom and I can go to the church and get lots done there.
Talked to Kirstin today and told her that the nurse on Tuesday had told us the medical team was just that--our team and we are the captain. Well, I think I am the captain and Tom is the general. Kirstin said, "No, mom, he's a Viking." So I asked her, what is a Viking general called. She immediately responded, Tom the Conqueror! Guess what the kids are getting their dad for Father's Day! Don't tell Tom! With a Viking "hat" and his fist a-pumping we'll all want to get out of his way!
Talked to Kirstin today and told her that the nurse on Tuesday had told us the medical team was just that--our team and we are the captain. Well, I think I am the captain and Tom is the general. Kirstin said, "No, mom, he's a Viking." So I asked her, what is a Viking general called. She immediately responded, Tom the Conqueror! Guess what the kids are getting their dad for Father's Day! Don't tell Tom! With a Viking "hat" and his fist a-pumping we'll all want to get out of his way!
Tuesday, May 12, 2009
Tom is a Viking!
Much to tell. Yesterday morning I spent almost 3 hours talking to medical people looking for answers about who was responsible for different parts of Tom's care. I think we've got it solved. This morning we met with a gastro doc who checked the tube and declared all is well. I learned that the burning Tom is experiencing in his throat is due to his inability to swallow effectively. When acid comes up the normal thing to happen is for saliva to wash it back down but Tom can't do that so we are learning how to take care of it other ways.
A friend from church stopped by for a short visit that was very appreciated. Kylisa brought dinner last night. It tasted so good. Funny how unsympathetic I have been for single people who say cooking for themself is hard to do. No more--now I understand. It was wonderful to spend time with Jackson and Grayson. Chris was also a big help working out our budget. (Thanks, Chris!)
On our way to our appointment at the UW today Tom asked me why we were going. I told him it was to learn about ALS. He asked me for the first time to explain it to him. I asked if he would like to wait and hear about it from the nurse or if he wanted to know what I know. He pointed to me. Instant prayers went up that I would have the right words and emotional strength. This was the first time he really seemed to want to know. I explained that ALS is a degenerative disease that attacks the neurons so that muscles are no longer able to receive communication from the brain. He asked if there was a cure and I said no. But there was lots of help to deal with whatever came along. That's some of what we were going to learn today. I cried but then reminded him what we shared just before he went into open heart surgery (and God brought him back from that)--he loves Jesus, I love Jesus, Jesus loves us. We're going to be ok. He agreed and made a fist and pumped his arm to say he's not giving up. I also said that all I wanted from him was his smile. In fact from now on every time he smiled at me he was saying he loved me. (Warning Kemper--this is the mushy part!) Tom turned to look at me with a HUGE cheesy smile on his face! That much?! We've been enjoying smiling at each other all day!
We met with the neuro doc's assistant. She gave us a one hour education on ALS along with lots of reading material. One of our assignments is to learn to ask for help with something every week. She said we could not do this on our own and we believe her. Already people have offered to do whatever they can to help and we are very grateful. We are going to begin a drug called Riluek which has the potential for slowing the disease down. We will also meet with a respitory specialist at UW. We will begin being proactive in searching out resources we might need in the future. We are hearing there is a lot of help in the area. ALS seems to have a mind of its own with each victim. We're told it could just stay where it is in Tom OR it could spread to his arms/legs. After explaining more about the disease the nurse left the room to get something and as soon as she did Tom pumped his arm and said, "They don't know me!" And Kemp and I agreed! Tom is a Viking and he has a mighty God. Who knows what they might do together?!
A friend from church stopped by for a short visit that was very appreciated. Kylisa brought dinner last night. It tasted so good. Funny how unsympathetic I have been for single people who say cooking for themself is hard to do. No more--now I understand. It was wonderful to spend time with Jackson and Grayson. Chris was also a big help working out our budget. (Thanks, Chris!)
On our way to our appointment at the UW today Tom asked me why we were going. I told him it was to learn about ALS. He asked me for the first time to explain it to him. I asked if he would like to wait and hear about it from the nurse or if he wanted to know what I know. He pointed to me. Instant prayers went up that I would have the right words and emotional strength. This was the first time he really seemed to want to know. I explained that ALS is a degenerative disease that attacks the neurons so that muscles are no longer able to receive communication from the brain. He asked if there was a cure and I said no. But there was lots of help to deal with whatever came along. That's some of what we were going to learn today. I cried but then reminded him what we shared just before he went into open heart surgery (and God brought him back from that)--he loves Jesus, I love Jesus, Jesus loves us. We're going to be ok. He agreed and made a fist and pumped his arm to say he's not giving up. I also said that all I wanted from him was his smile. In fact from now on every time he smiled at me he was saying he loved me. (Warning Kemper--this is the mushy part!) Tom turned to look at me with a HUGE cheesy smile on his face! That much?! We've been enjoying smiling at each other all day!
We met with the neuro doc's assistant. She gave us a one hour education on ALS along with lots of reading material. One of our assignments is to learn to ask for help with something every week. She said we could not do this on our own and we believe her. Already people have offered to do whatever they can to help and we are very grateful. We are going to begin a drug called Riluek which has the potential for slowing the disease down. We will also meet with a respitory specialist at UW. We will begin being proactive in searching out resources we might need in the future. We are hearing there is a lot of help in the area. ALS seems to have a mind of its own with each victim. We're told it could just stay where it is in Tom OR it could spread to his arms/legs. After explaining more about the disease the nurse left the room to get something and as soon as she did Tom pumped his arm and said, "They don't know me!" And Kemp and I agreed! Tom is a Viking and he has a mighty God. Who knows what they might do together?!
Sunday, May 10, 2009
Mixed day
It's been a day of mixed emotions--highs and lows. Neither one of us slept very good last night. Tom got up and worked on a puzzle somewhere around 2:00 am. I woke up a little while later and checked on him. I hate waking up and he's not in be with me--what a lonely place without him there. When I went back to bed my mind was all over the place, thinking of decisions I needed to think about making--thoughts I have avoided just trying to think about each day as it comes. Finally I turned to the 23rd Psalm--the Lord is my Shepherd--and prayed that Jesus would shepherd me and Tom--knowing that He knows all things and the plans He has for our lives. I also decided that trying to make any kind of decision in the middle of the night is a very silly thing to do (I didn't use "stupid" but that goes along with silly!)
Needless to say when Tom woke at 6:30 I was NOT ready to get up but a feeding tube will not wait--like I said before--a great alarm. It was hard leaving Tom to go to the first service without Tom--I always go early, teach children's church and then Tom meets me for the second service. Well, this morning I just welled up with tears with each person who hugged me. Tried sitting in the service but couldn't hold back the tears. Finally I talked to my teaching partner and said I didn't think I could teach this morning and she graciously took over. I drove home and picked up Tom. I was so glad to be back with him. Together we're good--it's hard to be apart. Enjoyed the worship service--special treat that daughter April and Rocky, Autumn and Kienan joined us.
Tom was very tired after church. He laid down for a nap as soon as we got home. I wasn't far behind him. Daughter Kirstin, Yura, Hunter and Moose came over for a Mother's Day visit. Hunter won the Sorry game with Far (Tom) a close second. I beat Yura for third! That means Yura came in LAST--but who's keeping score?! Kylisa is taking care of Ava (2 1/2) and Owen (1) for 3 nights so she gets the mother of the year award--4 kids under 3! She called after coming home from the zoo to say that they came home with all 4--didn't lose a one! Kemp is returning from picking up a friend's boat in the San Juans and taking it to Anacortes.
I think that last night a burst of reality hit--this isn't going away without a miracle. We're in this together. How can I complain when it's Tom who is suffering the effects of this terrible illness. If I start complaining then how can I be there for him? How can I complain when we've been blessed with so much for so many years? How can I complain when so many are suffering so much more? That's one thing my travels to Ethiopia showed me--how people with so little and such great suffering need so little and have so much to give. I think of the children at the Street Kid School--live on the street during the nights, come to this school that we would cal little more than a few small rooms with not much in the way of supplies during the day. The smiles on those faces will stay with me forever.
No, I don't like it--it hurts so much. But I know God can use this for His good and pray that He will somehow be honored through our journey. This morning just having people hold me while I cried was such a blessing--no words had to be spoken--just caring hugs and touches, prayers spoken spontaneously in response to the pain and shared love.
Needless to say when Tom woke at 6:30 I was NOT ready to get up but a feeding tube will not wait--like I said before--a great alarm. It was hard leaving Tom to go to the first service without Tom--I always go early, teach children's church and then Tom meets me for the second service. Well, this morning I just welled up with tears with each person who hugged me. Tried sitting in the service but couldn't hold back the tears. Finally I talked to my teaching partner and said I didn't think I could teach this morning and she graciously took over. I drove home and picked up Tom. I was so glad to be back with him. Together we're good--it's hard to be apart. Enjoyed the worship service--special treat that daughter April and Rocky, Autumn and Kienan joined us.
Tom was very tired after church. He laid down for a nap as soon as we got home. I wasn't far behind him. Daughter Kirstin, Yura, Hunter and Moose came over for a Mother's Day visit. Hunter won the Sorry game with Far (Tom) a close second. I beat Yura for third! That means Yura came in LAST--but who's keeping score?! Kylisa is taking care of Ava (2 1/2) and Owen (1) for 3 nights so she gets the mother of the year award--4 kids under 3! She called after coming home from the zoo to say that they came home with all 4--didn't lose a one! Kemp is returning from picking up a friend's boat in the San Juans and taking it to Anacortes.
I think that last night a burst of reality hit--this isn't going away without a miracle. We're in this together. How can I complain when it's Tom who is suffering the effects of this terrible illness. If I start complaining then how can I be there for him? How can I complain when we've been blessed with so much for so many years? How can I complain when so many are suffering so much more? That's one thing my travels to Ethiopia showed me--how people with so little and such great suffering need so little and have so much to give. I think of the children at the Street Kid School--live on the street during the nights, come to this school that we would cal little more than a few small rooms with not much in the way of supplies during the day. The smiles on those faces will stay with me forever.
No, I don't like it--it hurts so much. But I know God can use this for His good and pray that He will somehow be honored through our journey. This morning just having people hold me while I cried was such a blessing--no words had to be spoken--just caring hugs and touches, prayers spoken spontaneously in response to the pain and shared love.
Saturday, May 9, 2009
He's talking easier
A friend just called and told me I hadn't blogged in two days--don't know where those days went. Guess that's a good reason for doing this journal on a regular basis. I forget way too easy! Let's see--doctor's appointment on Thursday. Chest xray showed no pneumonia--also showed us the feeding tube and the wire sutures they put in during Tom's open heart surgery 7 years ago. Makes for a very interesting xray! We're going to try cutting back a little bit on the blood pressure medication--Tom's pressure is now very low and it's making him a little more lathargic than we would like. This balancing of meds is quite tricky. I think we've got the anti-saliva med at a good dosage. Tom is talking much easier. That is a big praise.
Yesterday our grandson Maximus spent the day with us. He made us laugh with all his funny antics. He and his grandfather definitely have something in common--few words but great hand motions to communicate. He won't say the color "red" so yesterday we renamed it--it's "D".
Today we drove in to Seattle to see Kemp and Angie. Tom recently sold his stamp collection but gave the United Nations collection to Kemp. We packed up all the boxes and took them in today. Hopefully Kemp will enjoy them as much as his father has.
Tonight I am very tired. I wish I could take this away from Tom--it's hard to know there's no treatment. I remain firm, though, in being determined to do everything possible to make it as good for Tom as I possibly can. I know our children feel the same way.
I am so grateful for all those who are posting comments, writing emails and sending cards--they all are amazing blessings and touch me more than I can say. Life really is all about relationships---One friend who I see very seldom any more since we live in different states told me this this week--Be strong. . . . . . . . . . . . . . . . . . or be weak. Both are okay. I know she knows what she's talking about--she lost her husband to leukemia a few years ago.
Yesterday our grandson Maximus spent the day with us. He made us laugh with all his funny antics. He and his grandfather definitely have something in common--few words but great hand motions to communicate. He won't say the color "red" so yesterday we renamed it--it's "D".
Today we drove in to Seattle to see Kemp and Angie. Tom recently sold his stamp collection but gave the United Nations collection to Kemp. We packed up all the boxes and took them in today. Hopefully Kemp will enjoy them as much as his father has.
Tonight I am very tired. I wish I could take this away from Tom--it's hard to know there's no treatment. I remain firm, though, in being determined to do everything possible to make it as good for Tom as I possibly can. I know our children feel the same way.
I am so grateful for all those who are posting comments, writing emails and sending cards--they all are amazing blessings and touch me more than I can say. Life really is all about relationships---One friend who I see very seldom any more since we live in different states told me this this week--Be strong. . . . . . . . . . . . . . . . . . or be weak. Both are okay. I know she knows what she's talking about--she lost her husband to leukemia a few years ago.
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