Last year I started a series called Changed Lives. The goal of this series is to show how Jesus Christ is changing lives one life at a time. He is radically saving us and then transforming us into His likeness and using our trials for His glory and to further His kingdom. It is my greatest hope that this series will remind you that Jesus is still changing people! Several months have gone by since I brought you the last testimony but today I finally have another one to share. This one is by my dear friend, Jan. This story is a bit different than the others, as you will see. You may want to grab a tissue.
I met Jan around ten years ago when her oldest daughter and my youngest daughter were on a travel soccer team together. We quickly connected due to our like-minded faith in Christ. A year or so later, they started coming to our church and we became friends with the whole family. A few years ago, the unthinkable happened to this family. I have watched Jan face this unforeseen and unexpected hardship with strength and fortitude that could only come from God. I remember having a conversation with her sometime in the middle of all of this. She told me how she was continuing to listen to John MacArthur sermons on rides to and from work. She kept feeding herself good spiritual food through it all. This made an impact on me. So often our human tendency is to withdraw from solid spiritual food when bad things happen.
Even though, in many ways, Jan continues to travel in dark, unknown territory, I see her continue to trust God through it all. Please pray for Jan and her daughters as they continue their journey of getting used to a new normal. I believe her story will not only inspire you but will also challenge your faith. I know it is her greatest desire that God use this for His glory and I believe that He will do so.
Here is Jan’s story–
The morning sky is a beautiful blue and the air is crisp and refreshing. It is a joy to experience such a day in the middle of July. We look up from where we are standing to see a peaceful field, swaying trees in the horizon, and orange lilies in full bloom. But the tears blur our vision and as we stand there with our arms around each other, we wonder if we will ever heal. I recall Michael W. Smith’s lyrics “There is strength within the sorrow, there is beauty in the tears, and You meet us in our mourning, with a love that casts out fear…You’re teaching us to trust”. I wonder if Lydia, 17, and Naomi, 13, are trusting more. Or do they, like me, only feel the pain? I’m not sure. There is only a grave marker there; the tombstone is not in yet. Some things are just not that important and I figure it can wait.
Walt Disney World. The “vacation of a lifetime” so we have been told. My husband, Doug, and I had never experienced Disney but, for some reason, we wanted to make sure our family would experience it at least one time. We were in a transition period in our lives and it felt like a vacation to Disney would complete one item we had on our bucket list.
I had worked at The Hershey Company for 20 years and had resigned just nine months earlier. Doug had completed his training and certification in Massage Therapy and was starting a business with another massage therapist while also working for a Chiropractor. Since Lydia, our oldest, was born Doug had been the stay-at-home dad and I was the working mom. (Maybe a better explanation is that I was the bread-winner, since all moms work). It was a good plan for us as Doug was a wonderful dad. He was a typical Type B personality and nothing seemed to bother him. He enjoyed his time with the girls at home, even home-schooling both girls (which was my preference, not his). We had an easy marriage, always supporting each other’s goals and dreams.
Our transition period was the plan for me to stay at home with the girls in their junior high and senior high school years while Doug went back into the workforce. We were all set for that change. Hershey had eliminated my position so I took advantage of a severance package. I felt like God had given me the gift of an extra and early year at home! Honestly, this was a huge step of faith for me as Doug had not yet graduated from massage school at that time. But I truly believed that this was what God was calling me to do. “Do you trust me?” seemed to be what He was asking. There were three specific happenings that led us to make the confident decision that it was time to come home. I would even classify them as “miracles”.
Miracle #1 At a 48th birthday dinner for Doug he announced that he knows what he wants to do in life. I am stunned. After being together for a little over 30 years, Doug finally knows what he wants to do? To give you a little more insight into this, you should know that we started dating when I was in 10th grade and Doug was a senior. He never went to school beyond 12th grade because he didn’t know what he wanted to do. The topic came up no less than 50 times in our years together but the answer was always the same: “I don’t know.” So this truly was a miracle.
Miracle #2 As we explored several schools for him to attend, it didn’t occur to me until later that Doug had not been in school for 30 years. He would need to take an entrance exam to get into the school. Since he was a quarterback and point guard and not an academic scholar, this would prove to be a challenge. He took the test and came close to passing, but, unfortunately, he didn’t pass. But since the economy was tight, admissions were low, and he was studying to be a massage therapist, they told us that they would “wave the entrance exam and see how he does”. Miracle #2 complete.
Miracle #3 If this is not a miracle then I will classify it as a strong sign from God that this was the direction we were to take. After working for Hershey for almost 20 years, there was only one position that I had interviewed for. Every other move, promotion, or change was a tap on the shoulder. If they asked me to do something, I said yes. That included a move half-way across the country to Arkansas for 3 years. And then another yes when they wanted me to head up a project in the home office and another move 1,200 miles back. I always said yes and there was always a position ahead. But this time was different. As I walked into my boss’s office the human resources person was present. He began to tell me that the position I was in was being eliminated but that they created another job that I could apply for. Actually, the job description was what I was already doing. It was a simple choice, really: Just interview for the other job and continue with my Hershey career. Or was it a gift from God to trust where He was leading me? After all, I was planning to resign in one year, anyway, when Doug was done with school and had started his business.
Again, God seemed to be asking me: “Do you trust Me?” I responded to this by resigning with a one-year severance package, trusting that Doug would graduate and begin his career. For just a short while, life was perfect. We were both so excited! Doug was thrilled about pursuing his newfound passion in life and I was thrilled to finally be home with our girls. We couldn’t wait to get started with this new plan for our lives.
Shortly after our Disney vacation I received a phone call from Doug’s sister. Doug had recently been in his hometown for a wedding and had stayed with his sister. While there, he had confided in her that something wasn’t right but he didn’t know how to explain it. I also was starting to feel uneasy about our situation but I brushed it off to a newness for all of us. Me being home and Doug being out in the working world was a really big change for us.
Doug’s sister insisted that I set up a doctor’s appointment just to make sure things were okay with him. I immediately agreed and we went in to see the doctor right before Christmas. The doctor explained that his slowness or sluggishness was probably caused by depression. But this didn’t explain another puzzling symptom: He was not able to write his name. He couldn’t connect the cursive letters together. Printing was fine.
We were in the midst of one of the most exciting times in our lives and the doctor was diagnosing Doug with depression? Neither of us believed him and so we proceeded with blood work and a follow-up appointment. Over the holidays I received a call from the doctor and he genuinely seemed giddy. He said he had found out what was making Doug feel different: His thyroid levels were very high and the appropriate medication should ease the symptoms. Of course, that was the answer! Since I had quit work we were in the process of switching insurances and had neglected to get his thyroid medication filled. It was as simple as that.
But three months later, Doug was still not better and his thyroid tested fine. This was definitely one of the lowest points in my life. No jobs, no idea what was happening with Doug’s health, and the girls were being home-schooled. What would we do with them? What did this mean for my dream to be at home? My plan to stay home with the girls was disappearing. I felt sick to my stomach.
At the time, I was teaching an evening class at a local college as an adjunct professor. I began to realize that I needed to find another job very quickly. Just the thought of having to do this was tearing me up inside. “But God”, I cried, “I trusted you!” My dream of staying home with the girls was being taken away while, at the same time, my husband of 26 years was so different. At this point I would have described him as mentally retarded. He was acting so odd. For example, he’d walk through a door and let it close on us. Or he’d lean over the girls in church to shake someone’s hand and make them almost fall without even reacting. It was definitely a strange place to be.
I was able to get a better-paying job with benefits in April of that year. But it meant a commute of 45 minutes to work (compared to the 5 minutes that I had previously) and I was making $40k less and also had fewer holidays and vacation days than my original job at Hershey. And this new job gave me even less time with my girls. Around this time, my trust in God was wavering. I questioned Him many times; I really did not understand.
Through the rest of that summer and fall, Doug progressively got worse and we still didn’t have any diagnosis from doctors. The girls started at a Christian school and I kept working. It just didn’t make sense to me. I thought I was doing everything right. I thought I was giving up my career to allow my husband to be the one bringing home the paycheck. I thought God was clearing the way for me to homeschool and enjoy my girls. I had trusted that this was what God was calling me to do. Nothing made sense to me. But I had no choice but to keep working and taking care of my husband and the girls. It wasn’t easy. Did I trust God? I said I did. Again, I didn’t understand. God had provided a job for me that allowed us to send the girls to a Christian school and, for that, I was grateful.
In early winter we got a diagnosis of Progressive Supranuclear Palsy. I had to research it since I had no idea what it was. We found out that it was a terminal disease with a life expectancy of anywhere from two to twenty years. I didn’t find that helpful. What would I do with a 49-year- old husband who has two to twenty years left to live? How do two young girls walk that journey along with me? I didn’t know how to navigate it myself, much less help them.
Of course, with this diagnosis it meant that we had some financial decisions to make. Again, the unknowns made this so difficult to make decisions and the experts in the industries were not really “expert” regarding our specific situation. I felt so very alone. I cried out to God to direct my decisions – it was only me making these huge decisions as Doug wasn’t able to really help me by this time. I needed to trust that God was guiding my decisions and looking over us.
As the disease progressed, life became more of “just getting through each day”. There was no time to really consider what this meant to our family or to consider what we would have done differently once he was gone. Would there be any regrets? Who knew? God had me in a place that was very unfamiliar. Caring for a husband who could no longer communicate, the majority of my time was spent cleaning up pee from accidents, waiting on him, arranging rides for the girls, trying to make their lives as normal as possible while the unthinkable was happening to our family, working full time, all the time trying to pretend that nothing was going on. Who was I kidding? Life for us would never be normal again – at least it wouldn’t be what we had once considered normal.
About this time, Doug started to take a huge decline every three months. We would adjust to the current condition and then he would make a huge decline again. We were never ready for each step downward. After he suffered a stroke on his 50th birthday, his needs increased dramatically. He needed help to get dressed, to eat meals, to go to the bathroom, and checked on multiple times during the day.
The next decline scared me more than the first. The disease was characterized by a backward fall. One day when I was home with him I watched him get out of a chair, take one step forward, and then four backwards before falling. He was bruised more than I would like to admit from all the falls he had sustained over the prior months. I had a new goal: No more bruises. He needed someone to walk him everywhere, since he could no longer navigate on his own. 24 hours a day, 7 days a week. How were we possibly going to do that? I had to arrange for someone to walk him everywhere, help him in the bathroom, and feed him while I was working and the girls were in school.
While we were dealing with all of this, we had another hurdle around that time. Doug had a condition that made him go to the bathroom every 1-2 hours, including the night time hours. I told my oldest daughter that between us, we could alternate nights staying up with him. She was off school for the summer, and for me, I figured how much different could this possibly be than having a newborn? I could do this. I took the first night and didn’t sleep at all. My daughter had the next night. I told her she could sleep as long as she wanted the next day, after his caretaker came at 7 am. I took the next night, and again, didn’t sleep at all. I obviously would not be able to do this and work full time. I was exhausted. After we talked, she agreed to take the night shift every night. What a blessing she was during that time. There was no way that I could do this by myself.
My oldest daughter went to two different week-long camps that summer. This meant that I had to care for Doug during the nights. I remember being at work on a Thursday during one of those weeks. I was sitting in a meeting when it hit me– I hadn’t slept since Saturday. How was I surviving this? God must have been sustaining me. We were continuing to trust Him in everything. We certainly didn’t know why He was allowing this, but we chose to trust in Him and what He was doing.
When the girls started back to school in late August, I was forced to get help. I hired a college student to take the night shift. Free room and board and a wage, too – seemed like a pretty good deal to me. I remember the day she moved in. I went for a walk and felt like I was walking on air. Just the thought of having another adult to take on some of the load and responsibility was freeing to me! This turned out to be only somewhat helpful. She often needed help with him during the night and I’d hear her quietly tiptoe into my room to wake me. We had given Doug a bell to ring when he need help but, unfortunately, once we passed the 3am time frame she wouldn’t even hear it go off. I would hear it, get up to help him, and let her sleep.
The next milestone came in October of 2013. I was getting him ready on a Saturday morning and could no longer get him up the steps. We were in the middle of the stairway when he fell backwards onto me. I’m not even sure how I got out of that dilemma. I do remember getting him upstairs and crying out to God for help. I truly did not know what to do at that moment. I came face to face with the fact that I could no longer take care of him in our home the way it was. I needed two people to assist him at all times and it was difficult enough getting one person. There weren’t any care facilities that would take him because of his age. I was not sure what the next steps would be and found myself completely and totally at God’s will. There was nothing I could do on my own. I was lost and saw no way out.
I cannot recall how we navigated those two desperate weeks. But what I do remember is God putting a name in my mind near the end of those weeks: A neighbor who worked for hospice. I had no idea what her role was at hospice or if Doug would qualify for hospice or even if the insurance would cover it. In fact, I really had no idea what hospice was. But I had nowhere else to turn. At the end of my rope, I called Amy.
I clearly remember sitting at the kitchen table with my sister when I called Amy. Within three hours, I had a hospital bed, a lift for Doug, other equipment, and a hospice nurse coming in five days a week. I was overwhelmed. I went from one of the deepest pits of despair to having a solution in place in three hours. God had answered my prayers. I also clearly remember a return phone call I received from Amy an hour later. She said that they had a bed at their hospice facility in Harrisburg and that I qualified for a week of respite care for Doug. They would come and get him in an ambulance, transport him to the facility, and take care of him for a week. I was overwhelmed with relief, grief, and confusion. I said no, thinking how could I send him away? It didn’t seem right. I hung up from Amy and looked at my sister. She had been there for several days, if not weeks, trying to help me. I was sobbing when I looked at her. My next thought was I need to do this not only for me, but for her. I had so many thoughts going through my head. Amy called back. “Yes”, I said, “that would be a blessing”. I desperately needed some respite and my sister needed to go home.
I talked to Doug about this. As much as I could understand him, he seemed ok with the idea. I would follow the ambulance to the facility, make sure everything was fine, and then go home without him. That was on a Saturday. On Sunday, the girls and I headed to the hospice home to see him after church. I wanted them to know that he was being taken care of – probably better than we could care for him here. We went to lunch afterwards and tears once again stained our cheeks.
Doug came home a week later and he was confined to his bed. Hospice would come every day and give him a bed-bath and his daytime caregiver would prepare meals and feed him. It was easier to care for him at this point. No more getting up in the middle of the night to help him to the bathroom. He was bedbound and would be until he went to be with his Savior.
He had a palliative care doctor who came to the house every month. She was a blessing to us. In October, she said that Doug probably had until ‘summer’. Another month she said the beginning of the summer, and at another point she said the end of the summer. I know it was a guess but that put a timeline on his remaining time with us. This was a difficult discussion with the girls. When it was ‘two to twenty’ years or six months, it doesn’t seem as final. It’s almost like the ‘tomorrow’ statement – tomorrow never comes. But the summer of 2014 does come, and it was painful to hear. At that point, we knew that Thanksgiving and Christmas of 2013 would most likely be his last. We also realized that his birthday in February would also probably be his last. But what should we do differently? I didn’t know.
When my youngest turned 11 that January, it was extremely difficult for me. Instead of rejoicing with her for turning 11, my mind only went to one thought: For the rest of her life, when she talks about her dad or about her life, she will say that she was 11 when her dad died. That’s all I could think about. I knew this because my mother’s father died when she was 12 and I remember her many stories over the years– “I was 12 when…”
We continued to watch Doug deteriorate. He was getting thinner and thinner. It was very difficult to watch the changes. Bed sores didn’t come until near the end. He didn’t have many as we cared for him as best we could. He was also becoming very stiff and his hands and feet were starting to look like they had severe arthritis. The hands that had so gently massaged other people’s muscles were now deformed and motionless. What he loved most were the foot and hand massages that many of his caretakers would give him.
It was on May 19 that the hospice worker recognized that fluids and food were going into his lungs. He was now unable to swallow correctly. We had known to expect this as it was a symptom of the disease. So it was on this day that the decision was made to stop all fluids and food, since he would asphyxiate which, I was told, would be worse than starving to death. And those were our choices at this point. We “celebrated” our 28th wedding anniversary on May 17th. I knew it would be our last.
For anyone who has watched a loved one slowly pass on my heart goes out to you. Difficult does not describe what that is like. Morphine becomes a gift. Each day you think is the last and then it turns into tomorrow. There is no quality time– only waiting and tears. But God sustains and helps you get from one day to the next. And as you kiss your loved one on the gurney as he is being taken out of your home for the last time, you know you will miss him, but that you also know that –if they were saved through faith in Jesus Christ—you have the hope that someday you will see him again in Heaven.
As I look back and reflect on the past five years, I can see God in every decision. I know that He was with me. He didn’t take away the pain, but He let me know He was always there. On May 30, 2014 I said good-bye to my husband of 28 years. At this point, two and a half years later, I still have no idea what God wants me to do with this. But I still trust in His leading. He has never left me.
“The worldly things have become a little dimmer, and the things of Heaven have become a little brighter”. I heard that from a pastor’s wife who lost her husband in a terrible car accident after church one Sunday as they were traveling back to their home. She did not seem bitter but, instead, said it with a sweetness that could only come from God. I now know what she meant.
In my Father’s house are many mansions: if it were not so, I would have told you. I go to prepare a place for you.
As James 4:14 says
Yet you do not know what your life will be like tomorrow. You are just a vapor that appears for a little while and then vanishes away.
God has been faithful to us throughout the past five years. Although we don’t understand, we trust that He knows what is best for us. The girls and I prayed faithfully that God be glorified through our trial. Whatever happened, we wanted God’s glory to shine through us. This was our verse:
I Thessalonians 5:18
Give thanks in all circumstances; for this is the will of God in Christ Jesus for you.
One of Doug’s care-takers responded to a gift and note that I left for her one morning:
For some reason I just now turned the page in Doug’s book. I opened your card and tears just poured from my eyes. Not out of sorrow or pain but because I am so thankful for everything I had to go thru that has led me to be with you and your family.
I learned the true Grace of God thru you. Though I love Doug as though he were my child it is your actions that I saw day to day that renewed my faith in God. To love someone is to love someone like Jesus loved us. Sick, poor, meek ….
I know you are grateful for my care of Doug without you ever saying a word. God brought you and your family to me so I could see. It is I who is most grateful. I have recently had an experience with God that is indescribable. It has made me committed to do His will and taught me that without him I have no life. You and Doug and your family contributed greatly to my salvation. I love you and I love Doug.
Thank you for the birthday present. But mostly thank you for allowing me to be a part of your life.
When I asked her if I could use this text at his memorial service, this was her response: “Oh I would love that….I am going to be glorifying God for sending him and your family into my life… For I came into a home where my Father was the center so that I would come to see the Light of Christ Jesus, My savior, through a family that witnessed the love my Lord has for all His children without uttering a single word. Doug was sent to me as a silent messenger and a righteous man. At my baptism you will all be mentioned for the selfless love you have shown me as Jesus asked you to do. Words aren’t enough”.
If all of this was for one soul to spend eternity in Heaven, it was worth it.