Anger got the best of me

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. 

It is what it is..

I find this pic amusing because her skin tone matches mine so
well but she looked like this due to her having jaundice!

Once we found out all about Lily, I have to admit I didn't want to tell people. I didn't want to here the what's wrong with her, what happened, did you do something you shouldn't have, why does she have that monitor, is that a feeding tube. These are all valid questions any curious person would ask. But they were still too overwhelming for me to process, let alone explain to others. I dreaded getting all these questions, I literally wanted to die. 




I went through a phase while Lilyana was in the NICU, where I literally spent all my at home time Googling everything I could have done to cause this. I use to think was this my fault, what the hell did I do. I knew I didn't DO anything but, I held this guilt. Once you hear that dreaded question "are you sure you didn't do anything" it started to get to me,  a lot. The doctors told me it wasn't anything I did but, they even tested her for a few viruses that could have caused it. Even though I was never sick during my pregnancy, they wanted to check.


Now a days I don't care about the questions. I would rather people ask questions then stare. Either ask a damn question or keep walking. The problem with questions these days is people want a full report. I don't always have the time to explain every little detail. Someone once told me I should make cards with her disorder and explain what it is and how it affects Lily. When I first heard this, I was like OMG I am not doing that LOL. I just didn't get the reasoning behind it. Now I COMPLETELY do! Thanks GWEN! 

Lily in her tumble forms chair,. she is holding her rattle
big stuff !!

I have to say my little girl touches peoples lives in a way not many can. Sometimes I feel like people are just drawn to her. I had a lady ask me about Lily the other day. She said do you mind if I ask, is that a feeding tube. I told her yes and she asked me what happened that she needed this. I just told her  a little about Lily without going into to much detail that she can't swallow thin liquids properly, that it ends up in her lungs and this can cause pneumonia. She went on to tell me a story about a little boy she knew that had to have a tube after heart surgery. I feel people think that they have to share something to relate to me for some reason. She didn't leave it alone at that. I swear she wanted to ask a million questions but was a afraid. So after a few more minutes she proceeded to ask what other things would be affected. I told her only time will tell but it could be anything from developmental delays to never being able to walk, talk, etc. I answered all her questions and didn't feel sad once. I'm not sure why but I didn't. She on the other hand shed a few tears. She told me that my story touched her heart. I will admit I kinda got uncomfortable at this point. Not sure why, maybe because she was showing the emotions I should be. But I literally didn't have those sad feelings at all. 


I think at this point in our lives, I have excepted everything. It is what it is. There is nothing that can be done to change it so the only thing left to do is except it and move on. Don't get me wrong I have my days. My angry days, my sad days, and my happy days. I have days where I am angry Lily can't do things other babies her age and younger are doing. It's definitely hard to see other peoples babies babbling, smiling, reaching for toys, sitting up and the big sigh, walking. I am so happy for others and so sad for Lilyana and myself. I know it's selfish. I feel like I have been robbed of the child I thought I would have, the amusement and laughter a growing baby would bring. Then I look at my precious baby, who is now close to 11 months old, and smile. 

My sweet girl on her first trip to the pool !

Lilyana with her cousin Caden