A Return to Normal

I suppose you could argue that last Thursday's final surgery marked the end of the eight-month ordeal of Ben's illness, but for me it was Monday morning that truly signified a return to normalcy. As of this week, Benjamin has returned to school full-time and his mother has returned to work full-time.

Ben's procedure last week was a quick one -- less than two hours between arriving at the hospital and going home. The surgery itself was perhaps fifteen minutes, during which the doctor went in endoscopically and removed the stent that had been placed into his bile duct back in February to address ongoing leakage of bilious fluids. During Thursday's procedure the stent came right out, and the doctor said that everything internally looked "beautiful". The small tear that had been the source of the leak has now fully healed, there was no inflammation or other sign of any problems, and he proclaimed that Ben  was in great shape.

We took it easy with Ben over the weekend, since even a "quick, easy" surgery is still a surgery. He made a fairly brief visit to the Magic Kingdom on Friday evening, where he mostly just walked around and made sure that everything was still there. He even stood and watched some of the mine carts go by as they were testing the Seven Dwarfs' Mine Train, although he was a little apprehensive about the size of the drop and how fast the train moves. It's definitely going to be the inside show scenes and music that make or break the ride for him when it opens in a few weeks. Other than that he had a pretty quiet weekend.

Then the big day came on Monday morning for him to return to school. He was happy and excited to go back. While his mom was at work, I stood by all day in my home office waiting to hear from his teachers in case he needed to go home early. That turned out not to be necessary, as he had a very good day. He did have one aggression right at the very end of the day, several inappropriate vocals, and quite a few disruptive behaviors, but that was all expected. The first day back after any break is always difficult while he returns to a normal routine. Even so, he did all of his work (except reading!) and made it through the entire day without any visible signs of exhaustion.

Yesterday he was back again for day two, and did even better. No aggressions, and a reduction in the other behaviors as he really began to settle in. On both days he was still happy and full of energy when I picked him up at the end of the school day. He maintained that energy for the entirety of the afternoon until mom arrived to pick him up and take him home. It has taken a  very long time, but we have finally reached a New Normal with him.

Obviously we do still worry about his long-term health. Seven years ago we had thought that his hospitalization was a one-time thing, and that we had dealt with the issue. With this prolonged, and much more serious, illness we are all a bit shaken. The specialist in Alabama assured us that he was unlikely to need further surgery on his pancreas in the future, as the way things are configured now will not allow for any stones to take hold and block drainage like they have before. Even so, the fact remains that Ben has a lifelong battle ahead of him against the dual challenges of Autism and Atypical Cystic Fibrosis. Today he is happy and healthy. Tomorrow he will almost certainly be the same.  But the shadow still lurks there in the future, like a time bomb waiting to detonate.

For today, though, I am happy for him and very much relieved. The eight-month ordeal is over, and a new day has begun. Hurrah!

Ron, I am so happy to hear that Ben is in good health again. What a major relief!

Ben and Snow White

Ben and Snow White

About Shmoolok

The word "shmoolok" is a mashup of the longtime computer handles for my wife and myself ("Shmooby" and "Lokheed", respectively).

I originally created this website to be a place for my family to connect, but it has since grown into something a little different.

As for me -- I am a father, a husband, a son, a software developer, and a writer. On any given day I am not sure how good I am at any of those particular things, but I do try my best.

Thank you for visiting my website.

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Benjamin's Lullaby

Popular Entries

There has been an influx of new readers to my blog. If you wound up here looking for stories about my son's ten year romance with Snow White's Scary Adventures, here are the major blog posts you will want to read:

SW1K - The Full Story

SW1K Redux

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SWSA Final Night - Prelude

SWSA Final Night, Part 1 - The Beginning of the End

SWSA Final Night, Part 2 - The Fairest One of All

SWSA Final Night, Part 3 - Counting Up, Counting Down

SWSA Final Night, Part 4 - The Big Ending

SWSA Final Night - Epilogue

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