Caregiving for a loved one with a rare and debilitating disease can stretch our capacities to the maximum. Some days our responsibilities feel overwhelming. Those days, when we are observing our life, all we can see is the storm clouds and the rain pouring down.
We have so many things to do and are not able to get it all done. However, when it seems that current circumstances are keeping us from moving forward, we can find joy. We might even see that the unexpected changes in our schedule become the memorable ones.
On the days that Nick has been in bed all day with seizures and seizure recovery, the priorities of my life shift and everything slows down. Even if initially I think, I don’t have time for this!, I do of course find the time to care for him. It has been during a few of those long hours of sitting by his bedside, focusing on him, that my heart was filled with immeasurable love for my son. I felt comfort streaming to me from heaven filling my soul and my fears were calmed in a tangible way. The memory of these rare moments sustains me through other difficult times.
Other times, we will receive a wonderful visit from dear friends. The joy of shared laughter and storytelling refills our depleted emotional storehouse. This happened on Sunday evening. Unexpectedly, Allen and Leonie Hunt phoned and said they were in the area and could they come by. Nick perked right up and we thoroughly enjoyed our visit with them. Nick’s prayer on Sunday evening expressed it all. “Thank you for the Hunts visiting us. We love them. We are happy.”
I do believe that this life experience is challenging for each of us. I also know that if we will take the time to notice, each of us do have these unexpected joyful moments that happen. Remember them, and store up the memory for the times when you need replenishing.
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