Another episode

 Sanfilippo is a thief. It literally robs my daughter of every aspect of life. It wasn’t enough to steal her mobility, voice, and ability to eat independently...it also wreaks havoc on her body day in and day out.


There are days that go by where she is perfectly happy and content. Then on the day you least expect it...chaos. We have spent countless hours trying to figure it out. Is it a headache or migraine...her bowels....a cold coming on...her joints...the pain from yet another fall? It could be anything. 


Nights like these are the worst, especially when Michael is gone for baseball. I try my hardest to keep a level head for the kids. I don’t want them to see how deeply this affects my heart. I try to cuddle Bridget to calm her, but she typically does not want to be touched during an “episode”.  


I go into problem solving mode. Does she have a temp, when did she go to the bathroom last, does she need another snack/something to drink, another allergic reaction? The possibilities are endless. And to be honest...each episode could stem from a completely different source. One thing that does usually help is for Bridget to chew (it has a calming affect for most Sanfilippo children). Tonight alone she was able to chew one of the “indestructible chewys” in half. 


I don’t share videos, pictures, or blog posts for sympathy or with intentions of anyone thinking differently of Bridget (I would hope no one would ever thing that of me). I just want to be transparent about what our life is like. 


I hurt for Luke and Greta, who clearly are worried about Bridget when these scenarios occur. I hurt for Michael and I, because these instances have profound and lasting impacts on our marriage and lives. And most of all, I hurt for Bridget, because she is the one in pain and she doesn’t have a voice to tell us how we can take her pain away. 


The truth is...these are the nights I carry on the best that I can...at the tail end of my rope...grasping for the strength to handle it all until I am alone and I can crumble into a million pieces. That’s the reality...and it’s harsh.


I cannot imagine a thief causing more damage than what Sanfilippo has done/is doing to all Sanfilippo families. 


Please keep Bridget in your prayers that she is able to rest and feel more like herself in the morning. 

Comments

  1. Such a heartfelt story. Prayers are powerful & all of you are in our daily thoughts & prayers. Stay strong when you can & lean on your Faith-Family & Friends.

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