Chronic illness is a little bit like having a baby. In the first few weeks of the diagnosis family and friends surround you. They bring meals and they surround you with prayer. Then after the first few weeks to a couple of months, the help slows down. Which makes sense to us. We understand why. We know others are fighting battles as tough as ours. Yet, the daily trials and chores greet us every day. How do we attempt to manage the day-to-day chaos? Here are some things we have learned along the way.
The need to be Realistic
In the beginning, we dreamed of going back to normal. Whatever normal is. It has taken me five years to be realistic. Mark’s Lyme is apparently not going away any time soon. If Mark was healthy our life would look a lot different. But, it’s not, so we must be realistic. We are blessed because our four kids and I (Robin) can tackle most of the daily tasks.
I went back to work
This one has been the hardest on all of us. We thoroughly enjoyed me being at home. We all still very much miss me physically being present to manage our day-to-day tasks. We cannot wait for the day I can go back home full time. It is what it needs to be. I am thankful I have the strength and ability to do my job. I am so thankful I enjoy my job and love what I do, but it is not where my heart wants to be.
Our house is broken up into zones. Our kids are responsible for the kitchen, bathroom, and living room as individual zones. They switch zones on the first of every month. Currently, Timothy is responsible for the dining room, laundry room, and basement. Cleaning zones allow us to function as a family. Everyone pitching in to keep our spaces orangized and neat.
Laundry has been tackled in a few different ways. Maddie was in charge of the laundry schedule, then as her academic load got heavier it was switched to Titus. It has shifted yet again. Now, the boys have a laundry day, the girls have a laundry day, us parents have a laundry day, and there is day for miscelanious laundry such as bed sheets, rags, and towels.
I am responsible for meal planning, purchasing groceries, writing and posting the menu plan on our cupboard. This helps us be good stewards of our food. For snack time our kids only have to look at the menu to see what they can eat. This allows our groceries to be eaten in an order that allows strawberries to be eaten before apples. While I am work ,Mark and Maddie know what to take out of the freezer. Naomi will know what veggies or fruit can be cut and prepared before I get home from work.
Last year I dreaded the first snowfall. We had two and a half shovels. Two gray, trusty shovels and a blue cracked, hanging-by-a-plastic-thread shovel. The task of shoveling often falls to our kiddos. In general, this is fine, our kids have chores and this one happens to be one of theirs. However, shoveling wet, thick snow is a little like trying to move a lead cannonball. We also had some of the thickest snowfalls we had in years. Last year we were blessed to be able to purchase a snowblower. Thank you, Jesus! We are also blessed because our incredible neighbor has started helping us with the chore when he is able. We cry every time he comes, it means the world to us!
Prayer and Flexibility
Flexibility has been one of the most important elements we have brought into being self-sufficient. The ability to pivot. Although when you have to pivot so often you have to cling heavily to the Holy Spirit. Instead of panicking, you have to slow down so you can hear the Holy Spirit speak. Then baby step, step-out-in obedience.
And quite honestly, we have not been very good at being flexible with tasks. There are certain ones that aid in our house running smoothly. It’s a struggle when I work a five-day week, Mark’s symptoms flare up, and life in general flares up. This is the moment when I pray and confess with my mouth I need Jesus to stand in my gap. Oftentimes, especially when I waited too long to call on the name of Jesus, and “I scream I can’t do this!!!” I often hear the voice of the Holy Spirit say, “finally, we have been waiting for you to remember.”
In truth, we are not self-sufficient
While we have learned some tricks and tips to help us through the tasks each day brings. God designed us to need those around us. He designed us to show up and give hope to the lost and broken. In truth, we stand where we are because God lavishes on his children. The Lord giveth and the Lord taketh away. We stand where we do because our dear friends and family have surrounded us. God gave me a picture at the beginning of Mark’s Lyme journey. It was of our family and friends surrounding us in a circle. One group faced us, they were to encourage us to our face. The ones facing away from us were to pray over us and ask for spiritual protection over us.
The road we have walked has been long. But, I would not trade the lessons we have learned. Our family’s prayer is “Lord make our pain and trials make us more compassionate and kind.”