 |
| This photo was taken 2 days following Jonathan's diagnosis. Under sweet Maggie on my lap, is a swollen mama belly with a little sister waiting to join the fam. |
Symptoms of ALS began for Jonathan the summer of 2016. In August, Jonathan was serving as the Bishop of the Riverside Ward for the Church of Jesus Christ of Latter-Day Saints. As such, he was attending a young men encampment with our stake. He found himself on a ski boat with a group of boys and leaders and took his turn in the water. It was then that his first inkling that something was not quite right began. He was unable to maintain his grip on the water-ski rope. His left hand has always been weaker than his right due to two finger amputations as a child, but this time behind the boat it was his right hand that was giving him fits. He couldn't keep a firm grasp on the rope. He thought it was odd and over the next several months continued to notice a change.
Jonathan's right hand continued to cause him to seek answers for noticeable changes. He started dropping his keys, his phone, and popcorn (Which was nearly a nightly treat at our house. Jenson's DO popcorn. After a late night at work or the church he would come home, pop a bag of popcorn and we would reconnect after another long day of not seeing each other. I would stand in the kitchen and he would pull up a stool at the counter and I would watch him drop kernels all the way to his mouth). Working as a nurse anesthetist, Jonathan had many opportunities to inquire after educated minds regarding what could be wrong with him. A hand surgeon suggested he try wearing wrist splints in case he was sleeping on his arm wrong. Which he did, but it didn't help. His 1st counselor in the bishopric was a chiropractor so he went in for an adjustment, to which he noticed no change. We wondered if he had carpal tunnel, a bulging disk in his neck, or a pinched nerve somewhere. As we continued to wonder what was wrong with his hand he lost the ability to do up his top shirt button or tighten up his tie. I was usually home and assisted in dressing him, but on one particular evening I wasn't there to help and he had to speak at the hospital. He dressed himself, all except the top button of his shirt and tie and headed for the hospital. There he found a dear friend of ours, Rich Huffaker, whom he asked to help him finish getting dressed before he had to speak in front of a room of physicians. When Rich realized that Jonathan's hand weakness had progressed to the point that he could no longer dress himself he decided to step in and told Jonathan he spent enough time taking care of everyone else in this world and it was time for him to take care of himself. Rich had a friend that was a neurologist and made arrangements to have Jonathan meet with him to take a look.
The day everything changed without a single thing around me changing...
December 9th was a Friday nearing Christmastime. It was close enough to Christmas for the air to be filled with excitement but not so close to be filled with stress. It was that magical window when life with kids is sublime and scrumptious. I babysat a few extra kids after school that day and had just shipped them out the door with their mom. Jonathan left early in the afternoon to meet with the neurologist in Medford. Adam and Matthew and Andrew had earned free pizza's at school because of good attendance. Magic was in the air, and I was rather large and pregnant. I decided this Friday night was going to be free-be pizzas, a new cookie recipe with Hershey kisses in the center (which were actually gross by the way - I don't know how it is possible to ruin a cookie with a clump of melted chocolate in the center, but these were horrible) and a family movie night. We ran to pick up the free personal pizzas for the boys, baked cookies, and I watched the clock thinking that surly Jonathan would be coming home soon. His appointment time was over 4 hours ago and I still had not heard anything from him. I thought it odd he was taking so long. I tried calling him and finally got through. I instantly asked him what the doctor said and asked him why it took forever. He said he found a few things out, but that we would talk about it when he got home. I pressed him to tell me but he was vague and again said we would talk about it when he was home. I told him we had pizza and cookies and a movie waiting at home so to hurry along! When Jonathan walked in the front door he took off his jacket and hung it on the first hook in a line of 9 where his always goes. I noticed large armpit sweat marks in his yellow University of Iowa t-shirt. He had been sweating and crying. As usual he was rushed at the door by 6 kids that loved their daddy more than anything on earth and I asked him again what he found out. He suggested we enjoy a family movie night, eat cookies and talk about it after we put the kids to bed. And so we did... kind of. Jonathan and the kids piled in the living room to watch the movie while I finished up in the kitchen. Within just a few short moments with two kids on his lap, Jonathan feel asleep in the big brown chair. Because I knew this man who was the other half of my soul, I also knew whatever he had found out at the doctor, he had googled. I opened his phone sitting on the half wall of the living room and read the title of the article.... Amyotrophic Lateral Sclerosis. That meant nothing to me. Nada. I read on, ALS - now we were getting somewhere. I had heard of an ALS Ice-Bucket Challenge but didn't have a clue what the heck ALS was either. I read on again. The description of the disease in the article was 100% spot on exactly what Jonathan was experiencing. And then I read this, "ALS has no effective treatment or cure. 100% of persons with ALS die from the disease and typical life expectancy is 3-5 years." I got hot. My head pulsed and I went to my room and laid on my bed and read the article all over again. Then I googled more articles about ALS and over and over again I read the same thing, and I knew this was for real. I was officially diagnosed the Wife of ALS.
No comments:
Post a Comment