I'm not the crying type, don't get me wrong I am human and a chick but I just don't cry easily or for any stupid reason, especially in front of others. I feel crying is a sign of self pity. Well tonight I had my party.
I dread phone calls from her doctors for fear of more bad news. It's very rare to hear good news these days and after awhile its just too much to keep in. Well this evening was one of those nights with the dreaded call. My baby girl has central sleep Apnea. This means that her brain doesn't always remember to send signals to the muscles that make you breathe. She has Apnea episodes that last for 10 seconds or more. Her pulmonologist also told me she needs to see an ENT - ears nose & throat doctor. They have to check to see if the anatomy in her airway is normal. I'm sitting here with lily, during her second sleep study of the week. She is covered in wires and her tiny face is hidden behind a huge Bipap mask. I started off really sad, had my pity party but now I'm angry. I'm angry for so many reasons. I'm angry my daughter has been given the life she lives. She really doesn't have a life. She sleeps most of the day, she can't swallow, she doesn't breathe correctly, she isn't mobile at all, she doesn't babble, she doesn't even smile. She will be one years old in a few weeks and she doesn't even function at a 3 month olds level. My daughter relies on machines and tubes to live. She has 4 different types of therapy a week and this isn't even getting down to all her medical problems. How can this be ok. This goes way my selfish needs for a typical child if that's what everyone reading this is starting to think. I'm angry that horrible people are given healthy children when they don't deserve to have any at all. I'm angry because my daughter doesn't deserve this life of pain.
Anger is a feeling I have a hard time shaking. I'm a huge grudge holder. I get angry easily, I always have but now its different. I get angry with people who complain about there kids. I hate the " my kids are a pain in the ass" " my kids have horrible mouths and talk back" and my all time fave " your lucky Lily sleeps so much". First off be thankful your kids can talk and walk, even if they have fresh mouths, maybe you should have raised them differently from the beginning when you thought the curse words and smart mouth was "cute". And how is Lily spending more time sleeping then awake lucky.... I guess people are really that selfish that they think the less interaction with your child, the better. I would do anything to have actual play time with Lily, where she interacts with me on her own. I would do anything to hear her laugh, see her smile, or call me mommy. 
