There are moments or days you do not realize how beautiful they are until much later.
September 18th was one of those days. Hyrum got to participate in the Primary Program. This was his last one before moving on to the youth program. We were not sure if it would happen. He was having too many days where he was too tired to go to practice, but he made it.
He did a great job! He knew most of the songs. He spoke clearly and did a great job memorizing. His grin was large.
Little did we know what the next weeks and months would bring. Two weeks in bed not able to stay awake more than a few hours a day. Infection in his body that his body would have a hard time fighting off. Losing his ability to stand and walk once again. Having to be carried or crawl even to get to the bathroom.
Once again dealing with doctors who have no idea how to help him or stop the progression. How can we be back to this place two years later? How does the medical field keep turning its back on us and other children experiencing the same things? We have been here before. Too many times before.
The best we can surmise is that he caught something. That his body can't handle it and does not know how to only fight the bug but fights his own body.
School is not possible right now. He could not walk to class. We tried. It was a complete disaster. They have been so supportive, reminding me his health comes first. We have moved to a hybrid school day. Doing what he can when he can. Zooming in during his main lessons for an hour. We are working on getting a wheelchair.
What the recovery from this setback will look like? I am not sure. I know we will get back to better than this. He is tired. I am tired. We will rest, regroup and move forward once again.
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