Defeated

I have been having a hard time lately. I know to some, it may seem small, but I have been thrown some hard blows emotionally and man, I'm not afraid to admit the toll it's taken on me. Quinn and her health have been taking up all my thoughts lately. Especially lately. Sometimes i look at her, and she just looks so pathetic. Her eyes are so dark, her face so pale. She's so frail.

I read about children like her, children worse than her, children who are still with us fighting, and children who have lost the battle with Mito. Around this time last year, I would have never thought we would be here, in this situation. If you would have asked me last year, I would have been in complete denial. Even though I knew in my hearts of hearts that she had a mitochondrial disease, I STILL wouldn't claim for her to have had one. I STILL wouldn't allow anyone to believe that it's truly what she had. I'd find reasons as to why she couldn't have it... her development was a bigger one. And then i would also get pissed off at specialists who would tell me that there's no way she could have it, because of (insert the dumbest reasons here). I wanted to meet other children to compare her with so that way I could feel better about what IT is. About HOW she is. I saw the progression on other blogs, what their children were going through, how much worse off they were than my child. And I never would have imagined that months later, i'd watch mine fighting to live in the PICU. how strange this world is, how daunting this disease, how drastically ever-changing.

Today, as i was looking at my kid, my kid whose disease is no longer masked by a very healthy appearance, I found my thoughts in the darkest of places. Places I truly don't want them to go. how long might I have with her, how many more Christmases? How many more birthdays? Family can ask the toughest things. I am bombarded with questions that I just have no answers to. Will she get better? Can't they just do something to make her stomach work? How long does she have to live? I can't answer these. It tears me up inside just hearing these questions. how am I suppose to know the answers to these? I look at her and I'm just so mad that things have come to this. It sounds so strange, but I get so pissed off at everyone.

I'm not stupid. I know that the chances of her gaining back any kind of gut function that she has lost is not very promising. What's hardest is hearing the same doctors who have told me for years and years that there was nothing wrong with my daughter, that she was just going to get better... those same doctors now tell me that there's nothing more we can do, except to treat the symptoms as they appear. I am told that there's nothing more we can do to move her stomach forward. there's no magic pill. there's no surgery that will contract her stomach muscles. there's nothing we can do. 

Just a few weeks ago, I totally broke down in front of Quinn's teacher. She was asking me how Quinn's neuro appointment went and I just told her that Q was diagnosed with Mito and I told her that I had known she had it for so long, but now we know for sure and I just started BAWLING my eyes out in front of her! It was terrible and embarassing!

dealing with this PICC line makes me feel completely defeated. It was a decision that came on so fast. It wasn't like the J tube, where we had months and months to decipher if this was the right decision for her. it was a... you aren't going home without a PICC line kind of situation... she NEEDS help. Her stomach needs help because sometimes, it's just not able to do its job. I still feel defeated. Seeing her line in her arm makes me want to cry. I just feel so bad for Quinn and all that she has to go through, but guess what? It's like, no sweat to her. She's the most amazing kid and today, she had the most amazing day. It was the first day in a very long time that she was with very minimal pain.

I know this blog was all out there. I'm feeling kinda scatter-brained. i am just feeling... defeated.