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.
Sunday, May 31, 2009
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.
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