Future fears

 

Some recent events have caused me to pause and reflect on the future. I have found that when caring for a terminally ill child, you have to push forward everyday, sometimes neglecting the things happening right before your eyes.

I’m terrified at the thought of someday losing Bridget. It’s probably worse knowing that it WILL happen and it is something we have to plan for mentally, financially, etc. I could be the most helicopter parent ever following her around, practically wrapping her in bubble wrap to protect her, and it wouldn’t matter because she is deteriorating from the inside out. 

The thought that really got to me though, was someday having to explain to Luke and Greta that their sister is gone. Even typing that sentence has my eyes swollen with tears. How will we explain it? How old will the littles be when it happens? It all just makes me physically sick to think about. Just this weekend Bridget had Super Saturday at ChildServe to play, and Luke was sad she would be gone at that for the afternoon. How will he accept the fact that someday his sister will no longer be there at all? How will I be able to let her go as her mom? How will it affect our family/marriage?

I was watching my children play this morning: Greta sitting up looking at her books (sitting unassisted—a new skill), Luke playing with his cars, and Bridget standing near the couch. It was only after a few minutes that I realized Bridget was “stuck”. This is something we have adapted to, but it began and we adjusted to it before I even internalized what was going on with her.

Lately it seems Bridget is forgetting little things, the other night at a play date with some friends, Bridget had small bites of food right in front of her, and it was as if she forgot her food was there so she was waiting for me to feed her again. Even though the food was a couple of inches away, I had to redirect her eyes to show her that she did still in fact have food there to eat.  

Not only is she doing this with food, but now she might stand in a particular position, and end up hanging out there for 20+ minutes. At first we thought she was just comfortable there. Now we realize it’s a combination of forgetting to move, as well as her joints stiffening up and she is literally frozen there until one of us picks her up to move her. Just now I moved her from the edge of the couch and her ankles were locked up and she hasn’t walked since. 

We have an appointment coming up on March 1st to chat with a doctor about possible medical interventions to help with Bridget’s joint stiffness and deterioration. My one fear is telling them that I don’t want Bridget’s personality to be wiped away with the addition of more medicines. In the end it is our choice with whatever intervention we choose, but that’s a possibility we need to be prepared for as we move forward. 

I just want Bridget to be happy and safe for however long she has left with us. I want us to be a complete family of 5 for as long as possible. I wish I wasn’t a shell of my former self for my husband. I know my posts have been sad these days. I have been asked for more updates, I guess now you have a glimpse into what life is like...and what consumes my brain each day. Being a parent is tough. Being a parent and a caretaker of a terminal child is unexplainable.