Day #3: In teaching of the resurrection of the Savior, Elder Joseph B. Wirthlin of the Quorum of the Twelve Apostles taught: "Each of us will have our own Fridays—those days when the universe itself seems shattered and the shards of our world lie littered about us in pieces. We all will experience those broken times when it seems we can never be put together again. We will all have our Fridays. But I testify to you in the name of the One who conquered death—Sunday will come. In the darkness of our sorrow, Sunday will come. No matter our desperation, no matter our grief, Sunday will come. In this life or the next, Sunday will come.”
In my battle with ALS, I find great comfort and peace in hearing the voice of the Lord through Scriptures, and through the teachings of modern day Prophets and Apostles. I know that because of Jesus Christ, my Sunday will come! #ALSAwarenessMonth#HopeIsNeverLost#HearHim
Jonathan's Facebook Post Today: Day #2: Living with ALS is challenging to say the least. Every day you find your body just a little weaker than the day before. Simple tasks become ever so challenging until you can't do them at all. There is not necessarily pain from ALS per se, but the process can cause pain - pain in joints from not moving them, pain in the lower back from sitting or laying without the ability to adjust yourself, pain from surgical procedures to have a feeding tube or a tracheostomy placed, and there is a degree of mental anguish.
I never imagined I would find myself confined to a wheelchair without the ability to move, talk, eat, and losing the ability to breathe on my own. But, that has become my reality. The mental challenge becomes learning how to cope with the constant changes in a positive way, and keeping the mind active. I am determined to do so! This life is so glorious in so many ways. There are so many things that we take for granted in life that we don’t even realize until they’re gone. I’m learning more than ever to take note of the little things.
If I might give a suggestion: take a moment during this “pause” of life to notice the little things. Be grateful! Say Thanks a little more! Grab your loved ones and pull them close and hold them there for a minute! Say “I Love You!” Look at the sky during a sunrise or a sunset. Look at the moon and the stars! Take time to notice the leaves on a tree, flowers blooming, birds chirping, and the breeze gently blowing during this beautiful time of year. There is much joy to be had, no matter how challenging we find our circumstances!
Jonathan began his quest to spread ALS Awareness today - with the movement of his eyes. I daily stand in awe at this man. Gone are his hands, his legs, his voice, and to some extent his endurance. But not his eyes nor his personality. And so for each day during the month of May he plans to share a snippet of life with ALS.
Jonathan's Facebook Post for today:
I am extremely grateful for the love and kindness that has been extended to our family today! As some of you know, May is ALS Awareness Month. Our home has been decorated with hearts and sunflowers, our sidewalks filled with colorful messages of love, we have received cookies, candy, flowers, and dinner. I feel the love and I'm grateful for the love and compassion!
ALS affects approximately 20,000-30,000 people in the U.S., and many more worldwide. With a life expectancy of 2-5 years, ALS is brutally fast in changing lifestyles and making family life extremely challenging. Within a lifetime, there is a good chance that you, a family member, or someone you know will be diagnosed with ALS.
So, as we begin this month, I will try to share more of my experiences of living with ALS. I also want to invite discussion - If you would like to ask me questions in the comments, or message me, I will try to answer them.
More than anything, I just want to express my gratitude for my many blessings! Life is still wonderful! God is ever present in our lives!
At the conclusion of a family fast for relief from Covid-19 on Good Friday, we participated in a Passover meal together. I love the Passover because it allows us to learn through the powerful tool of symbols. Symbols pass their meaning to us in an emotional way. Unfettered by explanation, they speak their meanings directly to the heart. Throughout time God has used symbols to teach His children. I wanted to do the same with mine.
The meal commenced with celebratory glasses of grape juice and proceeded until we came to the ritual called Yachatz. At this time, I lifted a plate that had resting upon it three pieces of Matzah, or unleavened bread. I asked my kids what these three Matzah could represent. One of them replied, our Heavenly Father, His Son, Jesus Christ and the Holy Ghost. Without saying more, I lifted the middle Matzah and with an audible snap, broke it into two pieces. I gently placed a broken piece into a folded white napkin where it now lay wrapped and hidden from our view. I then asked them again what this was symbolic of. There was a stillness, and in that moment my mama heart knew I no longer was at the helm of this meal. A teacher greater than I was speaking to my children. Not with words, but to their hearts. Each of us felt it. The Holy Ghost, who's divinely appointed roll is to bear witness of the Son, in gentle, quiet, and perfect ways bore witness. One child then spoke, "That is a symbol of the crucifixion and Jesus being laid in a tomb."
We continued on with the meal enduring big bites of bitter herb (horseradish), drank superfluous amounts of grape juice (which too carries symbolism), ate lamb for the first time in several years and then returned again to the broken piece of Matzah hidden in the napkin. The conversation continued, but this time we spoke of sacramental symbols and the power of deliverance. It made me think of this conversation I had with Aaron several weeks ago during a video dialogue I felt prompted to record.
With the joyful anticipation of a child we proclaim that we believe in a resurrection. We absolutely believe that each of us will rise again, with glorified and perfected bodies made possible by the Savior of this world. We love Him, and this Easter season testify again, that He lives.
It is my prayer that each of us will recognize for the first time, or yet again, our own personal "Matzah Moment" when we #HearHim and receive a quiet, gentle, witness that He lives.
While living in Iowa over a decade ago I got my very first smart phone. I remember specifically telling Jonathan I didn’t really want one because I could foresee it being a distraction as I cared for our kids. I saw myself being sucked in and spending time staring at my phone instead of watching our kids be kids. It was actually a real concern for me. Who could imagine having the ability to check your email at any instant and have the internet in your pocket at all times? That sounded dangerous. I remember very clearly feeling uncertainty about the vice in my hands. But, Jonathan saw it differently. Which is usually the case. What he saw was a tool. He saw potential. Reluctantly, I conceded the cell phone battle and we purchased a smart phone for this mama.
I slowly fumbled to find the good in owning a smart phone. I discovered one day that I could select a song as my wake up ring tone. While I was on the treadmill this morning, this song played and it brought back the memory of the first morning it became my wake up call.
In the still of that morning the song began. Startled that I actually managed to make my phone operate, and feeling bad to have it playing early, I quickly went to shut it off. Jonathan, even quicker, reached for my hand and held it back. “No,” his groggy voice said. “don't turn it off.” And he pulled me closer and nestled me in. Huddled under blankets we laid there listening to this song together... until loudly at the end the dynamic crescendo calls you to GET UP.
That moment is so clear in my mind.
Mr. Jenson, has always seen our capacity to harness light and intelligence
and use it for good.
He teaches me this daily.
Cell phone in hand, now as my constant companion, I listen to this song regularly.
"My Shepherd Will Supply My Need"
My Shepherd will supply my need
Jehovah is His Name
In pastures fresh He makes me feed
Beside the living stream
He brings my wand'ring spirit back
When I forsake His ways
And leads me, for His mercy's sake
In paths of truth and grace
When I walk thru the shades of death
Thy presence is my stay
One word of Thy supporting breath
Drives all my fears away
Thy hand, in sight of all my foe
Doth still my table spread
My cup with blessings overflows
Thine oil anoints my head
The sure provisions of my God
Attend me all my days
O may Thy house be mine abode
And all my work be praise
There I would find a settled rest
While others go and come No more a stranger nor a guest But like a child at home
Jonathan and Michael were snuggled fast asleep in bed. All the kids have taken their turns finding their warm nook next to their Daddy. Michael has always been our king of cuddle even from infancy. And how he loves his Daddy. What really hit me about this photo is Jonathan’s shorts. Jonathan always preferred a dressier look and NEVER wore athletic wear. As the ability to use his hands diminished he still wanted to go to the bathroom alone. We had to drastically change what he wore so he could pull his own pants down. Within time, even elastic band athletic wear became too difficult and the discovery of condom catheters and leg bags became a game changer.
These grey shorts. He lived in these grey shorts and a blue pair just like them. They were his wardrobe for over a year and he hated it.
You need background information to truly appreciate where I am coming from as I try to explain this video caring for Jonathan. This good man worked as a nurse anesthetist for over 9 years prior to being diagnosed with ALS. The 7 years prior to that he was a registered nurse spending many of those years working in a critical care ICU. If you go back again he was a CNA in a nursing home. And if you care to go even a tad farther, he spent his growing up years caring for his aging grandmother in his home. He’s been around the block.
If you don’t know what a nurse anesthetist is, it is the person that gives you labor epidurals (handy for a lady with 7 kids 😉) and puts you to sleep for surgery. In the states he practiced anesthesia, he was an autonomous provider. In several hospitals he worked at in Iowa he was the only anesthesia provider that would service the entire hospital. Due to his high level of autonomy Jonathan became very adept at anesthesia. He was good at it and very, very confident. As an anesthetist, his sole responsibility was to take people as close to death as possible without actually letting them die, and then bring them back to life as if nothing had happened post surgery. And how is such fancy footwork accomplished? Airway management. The man spent his professional career shoving things down people’s throats, masking them, keeping their airways active and making it seem normal.
Please keep this in mind as you realize I am a brilliant woman, but for the past 16 years my career path has been entirely focused on the business of manufacturing. Children. For a living. As in a professional child manufacturer. Job descriptions include stirring macaroni and cheese, wiping bums, and driving places. No where at any point in my aforementioned career has airway management been a required qualification.
So when Jonathan tries to teach me something it can get a bit ugly at times. He has mastered the art of airways and I am still trying to figure out what every machine is used for. Our synergistic powers are like pickle and jelly sandwiches. He has absolutely no use of his hands and nearly as limited use of speech and a perfect knowledge of how to manage airways. I have perfect hands, perfect speech, but am the dumbest human on earth when it comes to how to use any assistive devices. And we are trying to effectively communicate FINITE DETAILS. Learning to use the cough assist has been REALLY REALLY hard for me. Jonathan knows not just how to do things, but do them well. And expects it, because he knows it is possible. I give and give and give my best effort but I have no idea what “ideal” looks like. I have zero frame of reference. This machine has made me grumpy. It has made him grumpy.
But, if there is one thing you should also know about Mr. Jenson it is that he doesn’t stop until something is done well. (Ask me about framing our basement some time.) And so we have kept trying. We have altered our groove. We are gone after it. We have wanted to drop kick the machine and each other into the neighbor’s yard at times.
Every neurologist and pulmonologist has preached the importance of the cough assist. EVERY single one of them has warned that this machine alone will keep ALS patients out of the hospital more than any other. It is imperative that we use it. Jonathan’s lung function is at 30% so risk of respiratory infection ever creeps upward. The cough assist is something we have to embrace and keep after. Multiple times a day.
And so, if it can be of any help to my ALS tribe I want to share with you what we have decided works for us. At least for now. ALS is always changing and we will have to adapt as the disease progresses. This was helpful for us, but like I have mentioned before, you have to do what works for YOU. You have to do what is right in your situation, but if you have ALS it is kind of important at some point to figure this bad boy out. Working together as husband and wife to master the cough assist has been an arduous task. BUT it is an ugly ride I wouldn’t change for the world. It is piece of bedrock that is another layer to our story. It is yet again another witness to me that God intends for us to become one. We are not in this for time, but we are laying the foundation for our eternity.
PS- I forgot to mention in the video to hold the mask from behind. You get a better seal. The noise from the suction machine doesn’t allow you to hear his cough, but it is there. Also, in the video Jonathan’s lungs were mostly clear, which is awesome. During a typical treatment there can be far more retching and nasty secretions. It can get crazy gross. I have stimulated my own gag reflex several times as the bystander. I’m serious when I say the cough assist is true love ❤️
