Over sixteen years ago my husband was was diagnosed with Muscular Dystrophy. He died three years ago from breathing complications due to his illness. The last 2.5 year I was his full-time caregiver.
Here are some journal entries from that time:
Telling my story
Most people live with the expectation that life will continue unaltered and unchanged. I guess that comes from long periods in our lives where little changes. Or it may be that the changes thrust upon us are not what we would choose. That certainly was the case in our lives in the first ten years after my husband, Bill, was diagnosed with Facioscapulohumeral Dystrophy (FSHD for short), an adult-onset form of Muscular Dystrophy.
Receiving devastating news
When we left the neurologist’s office the day we received the devastating new, I was picturing all the changes we would more than likely see such as ramps, handicapped parking, etc. It was not that way at all. In fact, we continued on with daily life and the changes were so gradual that they seemed imperceptible.
Facing the real game changer
All that changed in June, 2010, when Bill started having difficulty swallowing and almost died from dehydration. I remember distinctly that the last day that Bill was able to eat was Mother’s Day because we ate tacos – one of his favorites. (From Taco Bell at that!) We went to see a swallowing specialist and he started swallowing therapy. He worked diligently to complete his exercises and we prayed this would be a temporary setback, like so many he’d met before.
As we were finishing up an hour of swallowing therapy, the therapist suggested that I take Bill to the emergency room (ER) as he was getting weaker. The amount of work just to get anything down was staggering. In the ER they put him on IV’s and he immediately felt better.
As we were finishing up an hour of swallowing therapy, the therapist suggested that I take Bill to the emergency room (ER) as he was getting weaker. The amount of work just to get anything down was staggering. In the ER they put him on IV’s and he immediately felt better.
Learning to be assertive
They wanted to release him to go home and that’s when I put my foot down. “This man can’t swallow and we need to get him some help,” I firmly told the ER doctor.
Little did we realize how much our lives would change. He was in the hospital for 14 days and spent eight of those days in ICU. It was a very difficult situation and I was filled with fear at the thought of losing Bill.
Little did we realize how much our lives would change. He was in the hospital for 14 days and spent eight of those days in ICU. It was a very difficult situation and I was filled with fear at the thought of losing Bill.
Finding God’s perspective
I needed God’s perspective to make it through this difficult situation. It felt so helpless. When I asked for His truth, I instantly had a mental picture of what I was doing. I saw myself trying to carry Bill. I was dragging him as best I could but we were both in so much pain. I let go of Bill and looked up. Suddenly, God became the size of an adult while we were the size of toddlers. He picked Bill up and took me by the hand. We started walking together. At that moment, I felt great peace.
Adjusting to the new normal
This new situation with Bill’s ability to swallow was a life changer, yet we adjusted to the new normal. So much so, that Bill found a way to feed himself via the feeding tube. I did really miss sharing meals with him and felt terrible to eat in front of him. Before long, his stomach adjusted to the new way of getting nutrition and he claimed it didn’t even bother him when we ate right in front of him. We continued to have all of our family gatherings at our house so he could be a part of the celebrations. We adjusted to the new normal.
At that time, Bill could still speak and breathe on his own without a ventilator. He fed himself through the feeding tube and we adjusted once again to the new normal. His physical condition gradually kept getting worse instead of better. About once a quarter I would get a reality check as to the progression of his ability to breath and even get out of bed. I mourned a little each time this happened. It was usually on Sunday, which was good because I had the time to process my feelings.
At that time, Bill could still speak and breathe on his own without a ventilator. He fed himself through the feeding tube and we adjusted once again to the new normal. His physical condition gradually kept getting worse instead of better. About once a quarter I would get a reality check as to the progression of his ability to breath and even get out of bed. I mourned a little each time this happened. It was usually on Sunday, which was good because I had the time to process my feelings.
Finding my confidence in the Lord
Adjusting to the new normal is embracing the current situation with confidence that the Lord will carry me through no matter what is going on. It’s so much more than just enduring and suffering like a martyr. It’s about believing that God is at work in everything – especially those things that I don’t understand. The greatest test of my faith comes now after my husband moved to Heaven. His faith remained strong until the end and I know that, with God’s grace, mine will too.
Prayer
Dear Lord, thank You for continual strength and courage to face each new day as it comes. I am grateful that You have just what we need at the exact time when we need it. As we face the challenges of this current day, I pray for continued reassurance that YOU are perfecting genuine peace within us. Thank you for guiding us through this difficult time without presuming to take over your job of sustaining us. I am grateful for promise that You know what’s going on and have a purpose. So I rest in that confidence and thank You that others can often see the shine more than we can. I pray you will glorify Your name through our lives and receive all praise and honor. In Jesus’ name. Amen.
What’s your story? How often do you have to adjust? Do you have anyone who seems interested in your story? I am. Please let me know how I can pray for you.
Author, speaker, corporate trainer, ordained minister and Hope Catalyst, Karen Sebastian enjoys sharing her rich life experiences with others – engaging them in adventurous discoveries of the beauty of hope in a dark, cloudy world.
