It’s fairly unusual for me to not have the will to write, because writing is my outlet for a lot of things. It helps me deal with my thoughts and feelings and helps me put things in perspective when I can’t make sense of it in my head. The past week or so, talking, thinking and even writing simply exhaust me. I am physically and emotionally exhausted. I don’t have the energy to recap the past 11 days entirely and most people that would even read this blog probably already know what’s going on. I guess I feel like I just have to put it down in my own personal record.
In my last blog post, I introduced baby Chloe and talked about some of the complications she was born with. Complications have progressed and now she is faced with fluid building around her lungs. Tubes were inserted in her sides to drain the fluid. Even with this, doctors aren’t certain they can save her.
On Friday, when I went to help Melissa “check out” of the hospital, the geneticist spoke to Kathy and me briefly about Melissa. Apparently, Melissa has Muscular Dystrophy and clearly has her entire life. It explains a lot of things, but I guess since I grew up with Melissa my entire life (I literally have no memory of life before having her as my friend) I just always felt that’s just the way she was made. I’ve never considered something “more” could be there. Melissa is fully functional, but has the mental capacity of approximately 12 years old, possibly younger in some areas. She doesn’t have the ability to process and weigh options for a decision or truly take care of herself in all aspects (although she desires to very much). I’m not sure if I’m in denial, or if it just hasn’t fully processed yet, but when I heard those words, I felt something inside me shut down. I don’t know a lot about Muscular Dystrophy, especially with all the different “types” there are, but what I do know about it is that everyone I know that has dealt with it in any way has told me that people with MD do not live long. I’ve been reading and researching as much as possible. Every type I’ve read about has the same result… short life span. The type I find closest to describe Melissa is called “Becker”. With the entire description, the part that my mind went directly to was the very last sentence of the paragraph, which said: survival into middle age. Middle age… Isn’t middle age somewhere between 35-45? Melissa is 24. I have so many thoughts, I can’t put things together very well. My first is that my entire life, OUR entire lives together, we would have never even known there was anything “wrong” with her and as children, we ALWAYS talked about growing old together (having a farm together, living together, raising our children together, opening a pet home… the list goes on) and now all of a sudden, I’m imagining losing my best friend in 10-20 years. If I compare how FAST the last 10 years of my life have flown and think about the next ten years… it seems like that’s next week. I can’t even really think about it. And what if we’d never known about this? Is it better that I know and can try to prepare to lose her at 45 instead of 85, or would it have been better to just lose her and not know why? I don’t like either option I guess. I can’t really process this fully.
The above text, I started writing weeks ago and obviously didn’t finish it. I have come in here a few times in attempt to finish and just lost all will to “talk” about it. A lot has gone on since then and well, honestly I don’t feel like talking about it any more. Short version… little Chloe passed away on January 20th. Most people that will even read this blog, probably already know the whole story, so I’m just going to leave it at that and move on because it’s exhausted me to all end…
This month has been really hard. In almost every aspect of my life… work, personal, everything. The only thing I can hold close and find my happy place is the moment after a long day at work when I get home, then Bart gets home and the second he walks in the door, I feel happy. Lately I’ve been feeling like I could just lay in his arms all day and all night and just never leave. I don’t totally know why… I just feel drained and that’s the only place I feel happy.
Dustin is getting baptized tomorrow. I assume. I think I mentioned previously that according to the way LDS baptisms work, the child gets baptized the first Saturday of the month following their 8th birthday… so, I assume he’s getting baptized tomorrow. It’s been hard to deal with this and I don’t totally understand why. I’m not sure WHY it’s been emotional for me. Him turning 8 has just been… sheesh. Weird. I don’t know how else to put it. I don’t even feel like talking much more about it.