A Closing Chapter

Returning to our blog

This is Ted.  I am returning after nearly two years of being unable to post on our blog. This post is filled with a lot of emotion for me.  And I hope it will be understood why I have not returned sooner or why our posts stopped suddenly without the ending of our 'adventure'. And also that you will understand why I need to share this very personal  account of those last two months.

On the morning of January 14, 2017,  Linda passed away while in St. Luke's Hospice Center in Bethlehem, PA.  They certainly need to be given my families thanks for their care and understanding of that last week.  We were there for 6 nights.

I know Linda is probably upset with me for taking so long to get back to writing about our adventure.

But in the meantime I have learned a great deal about the grieving process and perhaps this is another step along the way.  I do know that this process is different for everyone, and that no other person can really know how it affects them but themselves.  I also know that without the Gospel of Jesus Christ neither I nor Linda would have been able to face this time as we did.  She was cheerful and uplifting till the end. The more grandchildren that could squeeze onto the two hospital beds we had set up side by side the better.  Linda loved to have them crawl up and watch a movie with her.

I just re-read the last post we made, and it sure brought back a flood of memories from two years ago. Those who are familiar with the progression of ALS will know the stages of the disease that a patient faces.  Linda's ALS was much more aggressive than we knew at the time of that November 2016 post.  The doctors and the ALS Association all kept giving us what I now know is a standard answer; the average life expectancy is about three years. We all knew it was progressing rapidly, but I'm sure we didn't want to extrapolate that to an end date.  Linda's muscle function was dropping so rapidly we were all just trying to keep up with the changing needs. By Thanksgiving she could not use her left hand to feed herself and we were desperately trying to get a power wheel chair.  By Christmas we had received one, and I had purchased a van that allowed Linda to sit beside me in the passenger position.  She dearly loved to be able to drive along the Delaware River on River Rd., a beautiful place.

She was developing a cough about then that we were having difficulty suppressing, and she told me she thought that it was the beginning of the end.  Of course I didn't want to hear that, and I kept encouraging her to use the Cough Assist machine the ALS Association had given us.  That machine was helpful at first, but I wish we had known a little more about why it became so painful to her ears. I suspect we would have taken Linda to the hospice sooner if we had known that the muscles in her ears were failing and the machine was making her eardrums bulge.  So we struggled on with the cough assist and the antihistamine and small doses of morphine the nurses gave her.

On Saturday, Jan. 7, 2017 we could not control her cough until late in the afternoon.  Our Bishop came to visit and he and I gave Linda a priesthood blessing.  During that blessing I kept hearing these words that I refused to say.  Finally, after the same words kept coming, I told Linda that Heavenly Father was anxiously awaiting her return.  That was hard to do.  We both knew that it would not be long till she would leave this life for the next.

On Sunday the 8th, Linda ate a good breakfast and lunch. We talked with our daughters, Linda Jo and Kim, for a while and then Linda's cough returned and we could not control it.  We called the hospice and they said they could treat her better at the hospice facility, so they brought an ambulance and took her to the hospice.  By Monday afternoon Linda was having trouble speaking. By Tuesday she could not speak.  By Wednesday she could not open her eyes and every muscle in her body was gone except her lungs and heart.  All of our children were there and all we could do was sit with her and tell her we loved her as we waited.  She passed away Saturday morning as I was putting on her lipstick, as I had done every morning for the last two months after washing her face.  It was hard to see her go, but it was harder to ask her to stay and endure more suffering.

Linda was tremendously brave through those six months after she was diagnosed.  We both knew the outcome of ALS, but she remained cheerful and loving to everyone around her.  Her children, grandchildren, nurses and everyone was greeted with a smile and, as long as she was able, a thankful “Linda “ hug.  Even if it was with one arm or a wrist.

We have all missed her terribly, and it certainly is still hard.  For those of you who are going through something similar, or if you will in the future, I want to tell you that without the Gospel of Jesus Christ in our lives we would not have been able to go through this adventure.  Knowing that there is an Eternal purpose in our lives, and the joyous feelings of reuniting with our loved ones in the future, is what keeps me going through each day.

I hope you have read her testimony that she posted that fall of 2016.  She never hesitated to tell us of her love for the Savior which she gained as a little child.  I love her for that conviction that He is always there for us if we will just seek Him. 

The Things We See In Others

November 5, 2016  Post Dated Blog Post

FROM LINDA 

In our church we have what is called a Fast and Testimony Meeting on the first Sunday of the month. I had not been able to attend church for a few weeks and I missed it very much.  We were able to go on November 5th and my sweet husband wheeled me to the microphone. It was a strange sensation, not knowing if this would be the last time I would be able to bear my testimony.  My voice is starting to go and I am losing the ability to speak for very long.

I wanted to tell everyone how much my family’s and friend’s love has meant to me.  We have been so blessed to receive such a warm welcome back from our mission and to receive so many meals, cards, and well wishes from our Ward family; some of whom we had never met when we left on our mission.

The service they have given us and continue to give again and again has been such a humbling, yet joyful, experience.  I know service, both given and received, blesses all.  I can feel the love of the Savior through the kind thoughts and actions of those who help us.  I only wish I could thank them adequately, but I simply don't have the capacity to reach out to each of them any longer.  I believe service is a uniting action, which if fueled by love, can bring us closer to Christ. I only wish I could return the service I have received these past two months and build better bonds with our Ward family.

FROM TED

We are sorry we have not been able to post on our blog as often as we wanted.  It has been a whirlwind of activity lately as we try to keep up with Linda’s advancing ALS.  We have built a new entrance  to our home, a new driveway to have access with a power wheelchair, and have made some attempts to make Linda’s room as comfortable as possible.  We have learned about “hoyer lifts”, home health aids, Bayada and other items we had never heard before.

Our Church friends, our family and others have made our lives more comfortable by their expressions of love and support.  We are indeed grateful for our faith in our Savior and the knowledge we have of our existence after we leave this life.  It is what sustains Linda and I during this time.  Our children have been amazing in their support of us.  Each of them seem to have seen an area of need they can fill, and they have jumped into that quickly.  

Linda is now confined to bed or a power wheelchair.  We laugh and cry a lot each day as we remember so many memories of our life, family, Church mission and friends.  It is not what we envisioned after our mission, but we cherish every day we have together.  It  is a blessing to be so close to each other at this time.

Hopefully we will be able to post more often as our schedules slow down (hopefully..).   

Sept. 25, 2016  A Great Week (but one with new surprises)

Ted and I, during the LDS Philadelphia Temple dedication last weekend, listened to an Apostle of our church tell how one man felt about our prophet Joseph Smith’s teaching of eternal marriage.

It brought tears to our eyes. This is another example of teachings that are truly beautiful, and I remembered how, as a young convert, I recognized it as being just what a loving Heavenly Father would want for his children.

For Elder Parley P. Pratt of the Quorum of the Twelve, a knowledge of this doctrine of eternal marriages deepened his love for his family: “It was Joseph Smith who taught me how to prize the endearing relationships of father and mother, husband and wife; of brother and sister, son and daughter. It was from him that I learned that the wife of my bosom might be secured to me for time and all eternity; and that the refined sympathies and affections which endeared us to each other emanated from the fountain of divine eternal love. It was from him that I learned that we might cultivate these affections, and grow and increase in the same to all eternity; while the result of our endless union would be an offspring as numerous as the stars of heaven, or the sands of the sea shore. … I had loved before, but I knew not why. But now I loved—with a pureness—an intensity of elevated, exalted feeling, which would lift my soul from the transitory things of this groveling sphere and expand it as the ocean. … In short, I could now love with the spirit and with the understanding also.” What a beautiful expression of love for our eternal companions.

Update: I have decided when asked, “How are you?” that I will respond, “ I am doing great” - no matter what.

I have a husband that loves me. I have children that love me, and have forgiven me for mistakes made. I have sixteen beautiful grandchildren that love me. I have a sister whose family has been wonderful to Ted and I during this time. I have a church (ward) family plus two awesome Visiting Teachers that have rallied around me and my family to give us love and support. I know where I am heading to be with our loving Savior. How blessed am I.

Physically I am losing function  faster than I expected. It is actually funny as it has been so unexpected. I took a hard fall today because I did not know just how weak my ankles have become. Yesterday I had help to get down to our living room, not realizing that when left alone (when everyone else went to bed) that I could not get out of the chair I was in - so I slipped down to crawl to the stairs and then, since there was no railing, I couldn’t get up the stairs. Finally after calling out for my daughter, she comes running, thinking I fell. I was just laughing. I thought I was going to have to spend the night on the cold floor.  It took two people to lift me and get me up the stairs making us shocked at how much strength I have lost since climbing the Hollywood Hills 6 months ago. Every day is an adventure.

Due to stress Ted is down with Shingles and thus we both missed church. Our sweet neighbor and Bishop came to give Ted, I, and our darling daughter blessings. All is well.
Linda

P.S. from Ted:

Tonight is my first meeting with the local ALS support group.  I hope to learn about some details of the equipment needed in the future. At the very least I think I will learn how to make some of the daily tasks go easier for Linda. 

As Linda told, our Bishop and a good friend came to the house last night to give us a blessing.  I’m so grateful for the Priesthood and the many things Heavenly Father has provided for our comfort during this life. 

A word of advise: Even though it is expensive, I highly recommend senior citizens get the Shingles vaccination!

Sept 18, 2016 An Amazing Week

Sept. 18, 2016  An Amazing Week

Hello again to all who read our blog.  I’d like to share a  quote from Pres. Dieter F Uchtdorf that has lifted my spirits this past week.

“The joyous news of the gospel is this: because of the eternal plan of happiness provided by our loving Heavenly Father and through the infinite sacrifice of Jesus the Christ, we can not only be redeemed from our fallen state and restored to purity, but we can also transcend mortal imagination and become heirs of eternal life and partakers of God’s indescribable glory.  

My dear brothers and sisters, my dear friends, I testify that God sees us as we truly are—and He sees us worthy of rescue.

You may feel that your life is in ruins. You may have sinned. You may be afraid, angry, grieving, or tortured by doubt. But just as the Good Shepherd finds His lost sheep, if you will only lift up your heart to the Savior of the world, He will find you.

He will rescue you.

He will lift you up and place you on His shoulders.

He will carry you home.”

Can you feel the spirit of the above message? I love knowing that we have a Savior that knows us by name and loves us and will “carry us home.”

As I am being forced by my body to be what I do not want to be - discouraged, realizing what is ahead, it is forcing me to fight back and seek the Lord’s, my friend’s and my family’s strength.

Things we all take for granted : Imagine your life without these things:

Ability to drive.

The use of your right hand and arm and the beginning of losing use of your left hand. It was a cry moment when I couldn’t put a pacifier in our newborn grandbaby’s mouth as I rocked her. Imagine not  easily doing dishes, making  beds, cleaning up due to lack of strength and energy.

But gratitude comes in abundance as I can still manage to walk and climb stairs even as it is becoming a challenge. 

I have plenty of time now to spend with the 2 and 3 year olds, doing PBSkids, and holding the baby when needed. 

I have immense gratitude for my still being able to eat great food, to speak,  and breathe. I can tell my friends and loved ones daily how much I love them all. 

Blessings that we take for granted are around us each day. We all need to love more, laugh more, and forgive self, and others more. Life is beautiful. If life is so filled wIth blessings can you imagine how glorious heaven will be - where there will not be any sadness and pain? “We WILL transcend mortal imagination and become heirs of eternal life and partakers of God’s indescribable glory.”  

What a wonder to anticipate for us all.

P.S. from Ted

I have to echo Linda’s grateful thanks to the many friends in our ward that have stepped in to help us this past week.

It seems I came down with a case of Shingles. That, coupled with some changes in Linda’s ALS, seemed like it would be a major strain.  But kind friends have again stepped up and made us feel so humble and grateful for them.  It is hard for some folks (like me) to not feel inadequate when we have to accept help, so we don’t even ask for it even though it brings a lot of stress into our lives.  I was thinking I had a lot of empathy for Job, but my friends not only did not desert me, but came to our aid without having to be asked. 

I am continually grateful for the friends, neighbors and family we have.  I love them for their willingness to help.

I can only hope that I can learn from their compassion and become more like them and the Savior, bringing comfort and compassion to those in need.

We were also blessed and happy to be able to make it to the new Philadelphia LDS Temple Dedication. It was Linda’s first full day in a wheelchair, so an adventure as well.  What a joy it was to hear from two of the Savior’s Apostles and have our faith reaffirmed and energized.  But we’ll save more of that for next week.

Sept. 10, 2016 Great friends and family

Sept 10,

Our sweet family knew we love to go to Ooka’s, a Japanese Restaurant nearby, and when we went for our 50th anniversary, Sept 8, the waitress ushered us to a table that had a gorgeous array of flowers sent to us by our kids. Total surprise.  Knowing that this was probably our last anniversary where I will be able to eat our favorite foods we decided to splurge and buy all our favorites knowing we’d be taking a lot home. When we asked for the bill they said not to worry, the kids paid for it.  Well, another moment of tears. We wouldn‘t have ordered so much had we known.... An amazing evening.

Our sweet daughter and son-in-law have sacrificed so much to stay with us with their children and a new born. They are here to lovingly support us and cry with us as we see this disease progress.  Our likewise amazing son asked me if we feel anxiety over what is happening, and we honestly had to say that we didn’t have time as we were kept so busy helping with the kids. My daughter happily chimed in and said, “Yep, that is why we are here.”

We had two dear friends stay with the kids while our daughter, Ted, and I went to see the Philadelphia LDS Temple Open House. Beautiful! That is where you get the full picture of eternal families. So grateful - beyond words - for that knowledge. So grateful for loving friends.  

And due to the weakness in my ankles, back and thighs I got to ride in a wheelchair for the first time.  I still came home tired, but it was a beautiful day.

I am realizing each day as I slowly lose the ability to function that this is the beginning of my having to conquer my weaknesses: pride, selfishness, impatience, independence, fault finding, being judgmental, holding grudges, worry, -others?   I am going to have to let go, and let God take over and rely on his mercy. It could be so easy to fall into Satan’s trap of feeling bitter, and letting one’s worst traits come forth. The love that has been literally poured upon me makes me realize I need to show my immense gratitude by being strong and recognizing each of my blessings, moment by moment. I know that only through the love of the Savior will I be able to do this. Thank you all for your love and prayers.   Linda

I have felt inspired to share with you why I love the gospel of Jesus Christ, and was thrilled to become a Senior Missionary.

Looking back at my life, every adversity that I have had brought blessings in my life. In most cases it took me years to realize what those blessings were. 

The first adversity was that I came from a family that was filled with sadness. I was fortunate to have had that experience,  because I began at a young age to seek purpose for my life and to seek someone who would give me unconditional love.

I started my quest in the Baptist church filled with great people. There, in Sunday School, I learned about Jesus Christ - I felt His love. I knew beyond a doubt that it was unconditional - I prayed to Him as though He was by my side. I knew Jesus Christ was real, and that He loved me, because he answered so many of my prayers.

As I grew older I started to ask a lot of questions.  At the funeral of my dear uncle I  asked will we ever see him again and my mom said we probably would not see him. That we all go to heaven to live as angels, thinking that would comfort me. I was devastated.  They taught  that children would not be saved if they were not baptized. They said that people who had never heard about Jesus Christ and were not  baptized would not go to heaven.

As I learned more I did not recognize the Savior that I had learned to love in any of the teachings. I was so confused. There were so many churches that spun off of others because they did not agree with some teaching or other.  I was sixteen when I asked the question, if the Lord really loves us why didn’t He send  a prophet down to guide us, to end this confusion and teach us truth  - weren’t we as important as the people in the Bible? I began to doubt if there was a God or a Savior. Maybe they were just fabrications.

Another major adversity occurred to me in High School. I thought my life was destroyed and this incident forced me to take a train from Colorado to California. This became an amazing blessing.  On that trip I had a young returning LDS missionary tap me on the shoulder. He told me why he loved the people in a book called the Book of Mormon and how they helped him learn to love the Savior Jesus Christ.  I felt of his spirit and I needed and wanted what he had.

He invited the missionaries to teach me and I couldn’t believe what I was hearing.  This Church was founded personally by our Heavenly Father and his son, our Savior Jesus Christ, by instructing a young 14 year old boy prophet on the true principals of their church- the Church of Jesus  Christ of Latter-day Saints. The taught and today teach the members through, yes, a prophet. 

The missionaries taught that every one will have an opportunity to be saved - they also taught that our families, after this life, can be together for time and all eternity. They taught that once we die we can keep learning and developing. What joy this was to me!  As they continued to teach I recognized all the things they taught. It was as though I had heard them all before. It was like coming home. Tears of joy came, as I had felt so lost before.  We get daily proof that Joseph Smith, the young 14 year old boy, was the prophet he said he was when we READ with  a sincere heart and with real intent the amazing Book of Mormon, which  no one  could possibly have written without divine help. He translated it in 60 days with approximately 15 cross references per page to the Old and New Testament, and it refers to Jesus Christ, whom all Christians love, more times than the Bible, standing as another witness of Christ.  I continue each day to stand all amazed as I get confirmation as I read that book, that there is a Heavenly Father and his Son died to atone for our sins. 

Another adversity came following my conversion. My mom and I had an argument that caused me to pack my bags in tears and go driving down HWY 101 from Mtn View, California to San Jose. I saw what looked like an angel dressed in white on the road. I decided to stop a mile down the road because I felt I needed to do so, and I backed up. Standing there was a young man who ran out of gas, wearing a white shirt and tan pants which due to the head lights made him shine like an angel. I had prayed for a knight in shining armor to find me and love me since I was 5 years old. Tell me, what are the odds of my picking up a young  man who was a returned LDS missionary studying to be an engineer from BYU on a freeway at 10:00 PM at night on a major freeway?  I had a Book of Mormon on my dash so that started a conversation. He invited me to a Stake dance the next Saturday. I went on my own, his date did not pan out. He recognized me on the spot and he treated me like I’d  never been treated before, like a princess, and he has done so ever since. We were married in the Oakland Temple two years later.  Prayer works and adversity is important as it directs our path.

During our mission starting April 2015, I was experiencing tremendous fatigue, then Christmas came, and I had back problems which were different that the ones I had lived with for years. Then came a weak right hand with twitches in my arm.  On July 13, 2016 I was told I needed to go to an ALS clinic -the doctor could not help me any further. He said he was so, so sorry and gave me a hug.  Shocked, we drove home.  We had no idea. We thought my weak hand was due to a pinched nerve in my neck and my fatigue and back pain was due to old age.

We called our children -crying with them. We googled ALS blogs and realized this truly will be difficult - the biggest adversity of our life.

 But the wonderment about this is that I realize with each passing day that I truly love and appreciate my dear husband like never before.  Our mission made us close but this just magnified it a thousand fold. Our minutes together in this life are numbered and I can honestly say we treasure each.  Our children have reached out lovingly to us. This disease is joining us all together.

I have mercifully been given time to be  able to tell all my friends, family and loved ones how much I have loved, and appreciate all the numerous things they have done for us through the years.   So many wonderful people have made an imprint on my life and my heart that I will take with me forever.   

I am just so grateful that thanks to prophets, who  have been chosen by Heavenly Father and his son Jesus Christ, to lead this church (THAT IS TOTALLY AMAZING TO ME)  I know where I  came from, why I am here, and where I will be going - which our Primary children are taught weekly around the world. No other church has such a beautiful and clear understanding of our eternal lives. 

I know when we pass through the veil that there are endless possibilities as to what we each will be able to do and become. Think of it. When we die and are resurrected our bodies will be perfected. I intend to lead choirs of angels -create beautiful music - accomplish things I never could do here on this earth.  I know I will be able to be with my dad and my uncle, whom I adored, my ancestors whose spirits I have felt as we’ve done their temple work. I will be there to greet my husband, my children, and grandchildren, my sister and all her family, all those I hold dear.  I will joyfully meet the Savior face to face, who is responsible for all of our blessings and give him my love and total devotion.

What a blessing,  what a message. We should be shouting this to the roof tops. I have always felt this way as soon as I heard the missionaries, and Ted and I served on our mission with amazing people who are indeed shouting this message from the roof tops. That is why we serve!

All I know is that this adversity has a purpose and we are leaving that in the hands of our Heavenly Father.

Update: Still little things lost. I lost the ability to put my ear rings in, but as my husband puts them in I get two kisses I never got before :) . Cannot put my seat belt on, cannot plug in my blender, having a hard time walking up and down stairs, and standing. Got a new splint for my right hand and wrist. My thighs and ankles are getting very week and they gave me a fancy red Rollator (that’s a walker with wheels, but I’m still hesitant to use it all the time), I have to take sleeping pills to sleep due to the fasciculations. Always tired. My tongue is now twitching, meaning I will start losing my voice and ability to swallow.  All this--no pain. Unbelievable. My daughter and son-in-law and 6 children and a newborn are staying with  us to help us keep our eternal lives in view daily.  WE ARE BLESSED!

The Beginning. August 26, 2016

What a caterpillar thinks is the end of life, the butterfly knows it is just the beginning.
One of my favorite sayings.


Well, here we go -the beginning of the rest of my  (Linda's ) life.  It’s such a strange place to be.  Ted and I finished traveling on a ”bucket list” road trip for home in Pennsylvania, thanks to a gift from my sister and brother-in-law whom I have always adored. 

We have had a wondrous experience of serving as Public Affairs Missionaries for the Church of Jesus Christ of Latter-day Saints,  a.k.a. Mormons, under the direction of a passionate and talented man who loves life and loves what he does and serving with a talented senior missionary that will be an eternal friend.   We all were so privileged to work together helping the world know more about our church and hopefully learn to love us. We also met so many people who loved giving their time for others; all the people involved with public affairs in the LDS church in LA and SLC, the many senior and young missionaries we grew to love and admire, and the many interfaith, government, and civic leaders. The world is full of goodness!

This blog is dedicated to all  those who have ALS, MS, or just anyone going through difficult life struggles.  It is dedicated to all those on our mission who have touched our lives, to our Ward in Doylestown, Pa., and the Philadelphia Stake who have been angels in our stake and ward choirs and were saints when we needed their love and tender care throughout the years. This blog is also dedicated to our priceless family that gives us such joy that extends across this great country. We will refer to them all  throughout this adventure of ours. 

We encourage everyone to contribute their love and support to this blog and pass this on to those who are going through similar life changes that are going to be challenging.

We decided jointly that this effort will be an extension of our mission. One based on our faith, on love, on gratitude, on appreciation, on forgiveness, and yes, acknowledgment of things  lost, but hopefully finding  replacements with things gained.

Many good stories have flashbacks, so we’ll go back to important places and people in our lives as well.  

How this began:

In the LDS Church, you tell your Bishop you would like to go on a mission once you pray about it and feel that that is what Heavenly Father wants you to do. We did, and we received our call to go to Los Angeles for 18 months. For those who do not know, all missionaries gladly pay their own way.

When we began our mission, May 2015, I (Linda) loved helping in any way and was kept busy  learning and assisting in a great program called JustServe.org. If you want to feel good check that site out and volunteer and watch miracles happen. Dear, dear friends were made as I worked beside them in this inspired initiative.

People kept telling me that I would adjust to the hours. I did not. I started getting more and more fatigued. I thought, I am 70, it is just due to my age. In December I noticed my right hand started to shake a little while leading a choir of fun loving, spiritual, and joyous young sister missionaries in their Christmas Program at the Visitors Center at the Los Angeles Temple. I was also having undue pain in my back. I went to the doctor when I lost strength in my right hand. The doctor thought it could be a pinched nerve so I had an MRI and a brain  scan. Nothing showed on the MRI or the scan. I then had a complete blood workup done. When we went to see the doctor he said the blood work showed nothing.  I told him I was losing more strength in my hand. The doctor took my hand and looked at my arm. He noticed the twitching up and down my arm and I told him I was getting those twitches throughout my body. (Those twitches are called fasciculations.) He said he was so sorry to tell us, but that I needed to go to an ALS clinic for further assistance. He had a tear in his eye and gave me a hug. That was July 13, 2016. (It is now August 26, and I have lost  the use of my right hand and my right arm is extremely week. I am starting to stumble a bit, and my legs are weak. The good news is that there is no pain as of yet. I am just super tired.

Yes, it was a total surprise. It was a complete shock and many tears came, especially talking to our family. We googled personal ALS blogs and found that this will be especially hard for my dear husband and our family. So after lots of thought, and prayers we decided to make this an adventure that has a purpose, and is full of love for our Savior Jesus Christ who will be there to sustain us all, if we let him, as we go through difficult times in  our lives.