Regrets

Some days I so incredibly miss her... And that leads me to think how people don't understand it. I feel like some people looked at her as a handful, intimidating, and overwhelming or as a burden. She wasn't any of those things to me. I won't make it seem like we had glorious days all the time, but our hard days were not because of my being overwhelmed, our bad days were when I had to watch her be uncomfortable and hate being suctioned or seeing her cry or try to move but couldn't, that is what made our situation so difficult. She was a lot of work of course and a lot of maintenance which could become overwhelming but truth is if I had to suction out a doll every minute of the day but was allowed to keep her I would be doing it! My comfort was so put on the back burner as long as she was happy. I really hope I'm wrong about people thinking she was simply a burden because if we are going down that route you can say any child is a burden, whether they are an infant or 26 years old, you will always have to do something for them most likely your whole life and I bet no one else would appreciate if I said to you your child is a burden. That is the least thing I ever want Lua to be remembered for, is she was a handful or too intimidating. She wasn't! She was funny, smart, stubborn and could light up a room with her eyes in seconds.

Going back to the hard days for me, watching her struggle, that is so hard to think back on now. It makes me wonder if she was so unhappy here part of her gave up and wanted to go, she had fought so much in her little life I have a hard time believing it was pneumonia that took her. I find it more possible it was an SMA like disease that expired her body with possibility of her choosing to go with it. Makes me wonder if I didn't make her happy enough, if I wallowed in our pity of why did this happen to her too much instead of focusing on how to make her as happy as possible. I don't know, I just know I miss her and our lives are very empty with out her... And I hate regrets.