We are still in the midst of exhausting and endless days of setbacks, progress, and more setbacks with no realistic end in sight. Our current situation is not new, just the continuation of the chaos that started last year.
It has been one year since we started down this path of chronic illness. November 9th of last year was the day he collapsed at school and the days of complete panic set in. Thankfully those have passed and the grueling days of physical and occupational therapy are done, but we are still in the middle of the struggle with this.
We had managed to avoid any new illnesses since spring until just over a month ago. We had been hoping his immune system would be functioning better and he would be physically stronger than he was. Once again he caught a very common 24-48 bug that had him knocked down for 6 days. Once again we had a worsening of his Long Covid symptoms and his hand tremors are back with a vengeance. Once again there is nothing the medical field can do and no new answers or solutions. Symptom management is the name of the daily game we are now playing.
The school year has been a rough go. We have managed two full weeks of school so far. The first week of school and one somewhere in the middle. Most weeks he misses 1-3 days out of the four in-person days of school. It is hard to have additional academic learning and support when the days missed are so sporadic. This is an ongoing discussion with a extremely supportive school and teachers. It is hard to plan much of anything. Schedules and plans have to be fluid and flexible because we never know when it will be an extra hard or difficult day.
He is a trooper and still wants to do all the things he was doing before this entered his life. He isn’t able to do everything but we try to do what we can. It is hard knowing that even playing with friends for a couple of hours will lead to 2 to 3 days of recovery for him.
I get it, he looks fine on the outside, and even though you cannot see it, he is not fine. Thankfully most of the time he is happy, smiling, and laughing. What you are not seeing are the days when I can’t wake him, or he sleeps in 14 hour stretches back to back for multiple days, when he has migraines that last for days, or when he has to lean his body against the wall to make it to his room because he is too weak and needs the support, or when that is even too hard and someone needs to give him a piggyback ride. The hardest of all to watch is the tears shed when he feels just too sick once again.
So...we are nowhere we want to be, but we are adjusting to our new way of living life. We are trying to rest and recoup when we can so that we can deal with the next wave of this chronic and endless illness that has impacted more than one of us. It’s a challenge that is stretching all of us. If we are more scarce or unreachable it's because the load we are carrying has become too heavy and some days just getting through it is all we can do. Our current situation is not new, just the continuation.
I am grateful for my supportive husband and children. Especially for the girls watching Hyrum when I had to go to class on campus or take an exam, for picking Halina up from school when he or I were too sick to get to the car or drive, all the dinners they have made, shopping and cleaning they have done. I am grateful for the endless service they have given to me and our family. That is one of the silver linings, my family.
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