F-A-I-T-H
Forward - All - Issues - To - Heaven
My sister Margaret gave us a plaque with the above statement expressed and it has proven to be an important reminder lately of how we are getting through this journey we are on. There have been new developments in Jim's condition which have once again brought us to our knees in prayer and also in gratitude. I will elaborate, but first, a re-cap of a wonderful DECEMBER!
Still holding STEADY at the HELM, Jim was the master of 'celebrating'! He handled the following events with style, sensibility and a pinch of that lately ever present sentimentality! So here's how it played out!
December 1st - Breakfast with Santa - extended Patterson kids at Sonnenbergs
December 1st - Dinner at Country Club - Bear Lake extended family
December 2nd - Patterson Cousins Party
December 8th - Dennis Group Company Party at the Canyons Resort/andWard Party
December 18th - Graham Cracker house activity with grandkids
December 20th - Joanne's sibling dinner - Tuscany
December 21st - Bob and Sara arrive from Sacramento with Duncan and new baby Charlie
Busico (Jim's sister's family) wedding dinner - Garden Park Ward
December 23rd - Jim Rich family Christmas 'Adam' (the night before 'Eve')
December 24th - Rich extended family activity hosted by Paul and Shelley Rich
December 25 - CHRISTMAS morning with the Jim Rich Family (24)
December 27th - Jim & Joanne's children w/spouse's 'Felis Navidad' dinner (adults only)
December 28th - Rich kids sledding party
December 29th - Jim Rich family photo session at Busath (no fuss, no tears)
and....
December 31st - brought in the NEW YEAR with Rob and Liz Patterson, a good movie and Chinese food!
In addition, we had several visits in December from dear friends who brought in dinner, treats and Christmas cheer!
Thank you so much to all!
Now, there were only a couple of the above activities where Jim was just an 'observer'!
But for the most part, he was in 'good form' and a DARN GOOD SPORT!
Forward - All - Issues - To - Heaven
My sister Margaret gave us a plaque with the above statement expressed and it has proven to be an important reminder lately of how we are getting through this journey we are on. There have been new developments in Jim's condition which have once again brought us to our knees in prayer and also in gratitude. I will elaborate, but first, a re-cap of a wonderful DECEMBER!
Still holding STEADY at the HELM, Jim was the master of 'celebrating'! He handled the following events with style, sensibility and a pinch of that lately ever present sentimentality! So here's how it played out!
December 1st - Breakfast with Santa - extended Patterson kids at Sonnenbergs
December 1st - Dinner at Country Club - Bear Lake extended family
December 2nd - Patterson Cousins Party
December 8th - Dennis Group Company Party at the Canyons Resort/andWard Party
December 18th - Graham Cracker house activity with grandkids
December 20th - Joanne's sibling dinner - Tuscany
December 21st - Bob and Sara arrive from Sacramento with Duncan and new baby Charlie
Busico (Jim's sister's family) wedding dinner - Garden Park Ward
December 23rd - Jim Rich family Christmas 'Adam' (the night before 'Eve')
December 24th - Rich extended family activity hosted by Paul and Shelley Rich
December 25 - CHRISTMAS morning with the Jim Rich Family (24)
December 27th - Jim & Joanne's children w/spouse's 'Felis Navidad' dinner (adults only)
December 28th - Rich kids sledding party
December 29th - Jim Rich family photo session at Busath (no fuss, no tears)
and....
December 31st - brought in the NEW YEAR with Rob and Liz Patterson, a good movie and Chinese food!
In addition, we had several visits in December from dear friends who brought in dinner, treats and Christmas cheer!
Thank you so much to all!
Now, there were only a couple of the above activities where Jim was just an 'observer'!
But for the most part, he was in 'good form' and a DARN GOOD SPORT!
Amisdst the furry of all the above, our live Christmas tree lived only 'till mid December! Since I simply could not abide a dead tree before Christmas. I undecorated, bought a new much more 'acceptable' (according to our children's standards) live tree and volia - it was totally worth the effort!
We are now 'undecorated' and feeling a little like we have PHS (Post Holiday Syndrome)! Admit it - you've had it, right? It's normal - and we latch onto anything 'normal' these days!
Now to January and the issues at hand!
This week we once again made the trek to the U of U - ALS Clinic to see the myriad of 'specialists' who set about to tell you just how bad things are! The physical therapist, occupational therapist, speech therapist, dietitian, nurse, pharmacist, respiratory therapist, blood sucker (flobotomist, I believe) and finally the the doctor. If you're really brave, you ask to see the social worker whose face tells you that there is really no hope! (We opted not to see her again after the first visit) Yes, my sarcasm is obvious, but honestly - it's a five hour endurance test that we're not sure we're going to go through again!
On one hand, we did get many of Jim's questions answered! On another, we were given a round of talks about the possibility of a tracheotomy and the importance of making a decision to stay with our 'sip and puff' machine or the face the trach surgery with it's pros and cons. This has been utmost on our minds since November and we still struggle with the decision. The truth is, Jim's lung capacity is now at 17 %, a steady decline from the 110 % in June when we visited the Phoenix Mayo Clinic. His oxygen level is still good. This just means his diaphragm is struggling to take in air on it's own. Both of us had felt as though we didn't see any major decline and had reached a sort of 'leveling off this past month'! We believe this to be true, other than the results of the diaphragm test showing us differently! Have we just been especially blessed through the holidays - yes! Has there really been a leveling off with his muscle loss, we think so...we HOPE so!
Do we still 'issues' to face....it appears so!
But first...
a few more 'mini miracles'!
Last night about 25 (or so) wonderful Priesthood bearers in our ward came to our home to get a demonstration on 'how to help' Joanne tuck Jim in bed. The lifting (which our son Pat has so ably done for the last 4 months while he and Anna and darling Millie have lived with us) has now been divided each night during the week, between all these worthy volunteers and our four sons who live in the valley! Pat and Anna-Lisa have bought a home in Sandy and move this Saturday. They will be sorely missed, as they've not only helped fill us with cheer, but have willingly helped with all the lifting and adjusting that has become our daily routine! We love and appreciate them more than words can say! Our other children and siblings have also been wonderful, dropping by with meals, to care, clean or just for mere entertainment. Have I mentioned this before, WE HAVE WONDERFUL FAMILY SUPPORT ... and wonderful FRIENDS!
So, last night our bedroom was full of a lot of MEN and I admit, I was leery of our privacy being invaded (Jim seems to take this in stride...and is completely without guile or pride - the bad kind)! In the end - it was a truthfully a thrill and very heartwarming to feel this mighty army of support! I marvel at how much we are loved and thank one and all for their willingness to help! It is difficult to be the 'giv-ees' however, but I guess this means....we're growing!
In addition, as December began we also began Hospice. Now there's an fearsome word! But we've survived and now have an aid coming in every morning to get Jim out of bed, showered and ready for the day! Again, leery as we were for this, we are finding that many people are on and off hospice as their needs come and go! The 'Caregivers Support Network' (our particular service) has really tried to accommodate our needs and the aids have been competent and friendly!
I suppose the 'mini miracles' we've witnessed lately are these...
We have once again moved into uncharted territory and are able to accept the changes with gratitude instead of fear! We can humble ourselves to accept the love and support that others have been so anxious to share!
'Two' last notes!
When leaving the ALS clinic yesterday, a pretty tall woman in her 40's followed me and asked if Jim had ALS! When I said yes, she admitted (with tears in her eyes) that her husband had just been diagnosed. He is 45 and they have 12 and 15 year old daughters. He had been suffering from 'fasciculations' (twitches all over his body - Jim's identical symptoms) for about six months and had been diagnosed at roughly the same interval of time and same time of year as Jim! She told me how discouraged her husband was and that she'd just said to him, "but what about our miracle?" I gave her a big hug (and my phone number) and said - expect and accept the.....
MINI miracles!
Today I had a pedicure from a young Vietnamese woman who nearly died of seizures at this time last year. She kept repeating....STAY STRONG, everything will be ALL RIGHT!
I think she meant.....
Forward All Issues To Heaven!
We are now 'undecorated' and feeling a little like we have PHS (Post Holiday Syndrome)! Admit it - you've had it, right? It's normal - and we latch onto anything 'normal' these days!
Now to January and the issues at hand!
This week we once again made the trek to the U of U - ALS Clinic to see the myriad of 'specialists' who set about to tell you just how bad things are! The physical therapist, occupational therapist, speech therapist, dietitian, nurse, pharmacist, respiratory therapist, blood sucker (flobotomist, I believe) and finally the the doctor. If you're really brave, you ask to see the social worker whose face tells you that there is really no hope! (We opted not to see her again after the first visit) Yes, my sarcasm is obvious, but honestly - it's a five hour endurance test that we're not sure we're going to go through again!
On one hand, we did get many of Jim's questions answered! On another, we were given a round of talks about the possibility of a tracheotomy and the importance of making a decision to stay with our 'sip and puff' machine or the face the trach surgery with it's pros and cons. This has been utmost on our minds since November and we still struggle with the decision. The truth is, Jim's lung capacity is now at 17 %, a steady decline from the 110 % in June when we visited the Phoenix Mayo Clinic. His oxygen level is still good. This just means his diaphragm is struggling to take in air on it's own. Both of us had felt as though we didn't see any major decline and had reached a sort of 'leveling off this past month'! We believe this to be true, other than the results of the diaphragm test showing us differently! Have we just been especially blessed through the holidays - yes! Has there really been a leveling off with his muscle loss, we think so...we HOPE so!
Do we still 'issues' to face....it appears so!
But first...
a few more 'mini miracles'!
Last night about 25 (or so) wonderful Priesthood bearers in our ward came to our home to get a demonstration on 'how to help' Joanne tuck Jim in bed. The lifting (which our son Pat has so ably done for the last 4 months while he and Anna and darling Millie have lived with us) has now been divided each night during the week, between all these worthy volunteers and our four sons who live in the valley! Pat and Anna-Lisa have bought a home in Sandy and move this Saturday. They will be sorely missed, as they've not only helped fill us with cheer, but have willingly helped with all the lifting and adjusting that has become our daily routine! We love and appreciate them more than words can say! Our other children and siblings have also been wonderful, dropping by with meals, to care, clean or just for mere entertainment. Have I mentioned this before, WE HAVE WONDERFUL FAMILY SUPPORT ... and wonderful FRIENDS!
So, last night our bedroom was full of a lot of MEN and I admit, I was leery of our privacy being invaded (Jim seems to take this in stride...and is completely without guile or pride - the bad kind)! In the end - it was a truthfully a thrill and very heartwarming to feel this mighty army of support! I marvel at how much we are loved and thank one and all for their willingness to help! It is difficult to be the 'giv-ees' however, but I guess this means....we're growing!
In addition, as December began we also began Hospice. Now there's an fearsome word! But we've survived and now have an aid coming in every morning to get Jim out of bed, showered and ready for the day! Again, leery as we were for this, we are finding that many people are on and off hospice as their needs come and go! The 'Caregivers Support Network' (our particular service) has really tried to accommodate our needs and the aids have been competent and friendly!
I suppose the 'mini miracles' we've witnessed lately are these...
We have once again moved into uncharted territory and are able to accept the changes with gratitude instead of fear! We can humble ourselves to accept the love and support that others have been so anxious to share!
'Two' last notes!
When leaving the ALS clinic yesterday, a pretty tall woman in her 40's followed me and asked if Jim had ALS! When I said yes, she admitted (with tears in her eyes) that her husband had just been diagnosed. He is 45 and they have 12 and 15 year old daughters. He had been suffering from 'fasciculations' (twitches all over his body - Jim's identical symptoms) for about six months and had been diagnosed at roughly the same interval of time and same time of year as Jim! She told me how discouraged her husband was and that she'd just said to him, "but what about our miracle?" I gave her a big hug (and my phone number) and said - expect and accept the.....
MINI miracles!
Today I had a pedicure from a young Vietnamese woman who nearly died of seizures at this time last year. She kept repeating....STAY STRONG, everything will be ALL RIGHT!
I think she meant.....
Forward All Issues To Heaven!
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