Behind the scenes

I would be lying if I said the holidays were easy for us...for various reasons of course. On one side we are thrilled to spend time together, but on the other side we’re anxious about how Bridget will handle the change in routine and structure. 

There are very few early indicators that Bridget is going to have a tough evening. The major 2 are when we notice she is becoming hyperactive and agitated, and when her cheeks become fiery red. Of course this had to happen on the evening of Thanksgiving as we were surrounded by family. 

We were staying at my sister-in-law’s house and they had gone to the trouble of setting up a bed in a spare room just for Bridget so that we could all get some sleep. Unfortunately, Bridget didn’t go to bed that night. 38 hours. Bridget and her exhausted body spent 38 straight hours awake and miserable.  

People have asked what we do when Bridget stays up like that. Well, we try to tag team it (however Michael is usually the one to stay awake the majority of the time with her). I get too emotional when it happens. And sadly, it isn’t just her being awake. She usually has side effects too: this time being nonstop moaning, crying, pacing, and going to the bathroom. 

It’s physically, mentally, and emotionally exhausting. I know that she is out of sorts, yet she doesn’t even have the words to tell us what is the matter. We struggle to stay calm and find ANYTHING that will soothe her, and in the end we’re all completely 100% on empty.  Then the guilt rolls in as we feel awful that we’ve ruined a family function once again, kept everyone up throughout the night, left early, AND cancelled another family get together. 

Bridget has been relatively calm lately, with fewer episodes. It seems like whenever we leave home it triggers another episode. I’m trying to search for the positives...but struggling to cope. I so desperately wish that we could be like every other family. Enjoying time together, not stressing over every move that Bridget makes, and being able to relax with family and friends. 

Sorry for the sad post. Unfortunately, this is the reality of Sanfilippo. So much is kept behind the scenes because there aren’t many positives to speak of. We will just keep doing our best to try and keep Bridget comfortable and happy.