The end

 

It feels as though we are in the eye of the storm right now. Life is moving and swirling around us, although time is almost paused inside of our home. I feel my heart racing, and at the same time I’m trying to not even move an inch…let alone breathe myself, watching every painfully slow breath that Bridget takes. I remember this feeling. I remember sitting in the hospice house watching my grandma’s chest rise and fall, and that achingly long pause between the next breath. 

Bridget is so very strong. She has been mostly at peace the last week or so. We are now doing daily hospice visits, as Bridget has been moved to ‘end of life’ care. I feel my chest tighten up even as I type those words. I have known others who have lost children before. But there is truly NO WAY to understand this excruciating, deafening, colossal pain unless you have or are going through it. 

Our hospice team had us set goals a couple of weeks back, of what we wanted for Bridget. Our main goal has been to keep her comfortable and content. The other goal was to have her be able to celebrate Christmas with both sides of her family. I feel like we have been successful in being able to do both of these things, and know that is what she would want.

Our biggest concerns the last few weeks have been centered around Bridget’s feeds. The rate/volume/etc. has been problematic. We were struggling to figure out whether we had to make tough decisions regarding continuing or ending formula as her body was no longer able to tolerate it. After many meetings, daily hospice visits, and now a major decline in Bridget’s heart rate and oxygen level, we were told that even if we did do the j-tube surgery, or try any other measures, we would still be in the same scenario that we are now. Sanfilippo is doing what we always knew it would do. It is demolishing every last working part of our baby. Bridget’s brain is no longer “communicating” with her other organs, and we have very limited time left.

I can remember diagnosis day and every little emotion that broke me, but I could never prepare myself to be right here, right now, in this situation. I rarely swear on here…but I’m fucking mad. I hate this syndrome with every ounce of my being. I hate the pain our girl is having to push through (even with heavy meds you can tell she is fighting so hard). 

I honestly can’t even focus to write anymore. I want to always remember these last days knowing that I was the best mom that I could be to Bridget. So as long as it takes, I will stay by her side, hold her hand, rub her cheek, and keep her as peaceful as possible. Thank you to everyone who has reached out. We are going through the most unbearable experience, and although we might not get back to you right away, we appreciate the thoughts and prayers…Bridget and our family truly do need them now.