I'm a bad mom.

Aaron came home to me crying.. Yet again. He asked me about 40 times what was wrong (Classic Kaiti). And on the 41st time all I could say was "I'm a bad mom." And then I burst back into tears. It was a really hard day. It started off with Layla thinking 4am is when we wake up for the day. I tried and tried to get her back down to sleep but she wouldn't. The only nap she took all day was when we went for an hour and a half walk and she slept most of it in her stroller. So we both started the day with less than 5 hours sleep. Other than that walk I spent the rest of the day rocking her and feeding her. She would not let me put her down for more than one second. Even to go to the bathroom she would just cry and then that cry turns into strong wheezing and possibly choking if I don't pick her up in time. I hate that choking is now happening multiple times a day. Her whole body convulses and it's hard for her to get the cough out. I just put her over my shoulder, start hitting her back and pray. Then usually a chunk of spit comes out. It scares me so much. Especially being alone with no vehicle. I guess if she couldn't get it out I'd just have to call 911 which is a scary thought. She can only last so long if she physically can't breathe. Because her suction is so weak I have to hold her head to me as she feeds. So unfortunately even though feeding her is giving my feet a rest because I get to sit, it's still physically demanding to get her fed. Needless to say I had an extra hard day which made my mind go to places I don't want it to. I actually had the thought that if my time is limited with my child why is that time so hard? She should just go now. What's the difference between 1 and 2 years old? What is her quality of life difference? It'll only get more painful for her. We just have to slowly watch her die? It makes me feel sick to see myself write that but I went there, I go there sometimes. And that makes me feel like I'm a horrible mom. Aaron gave me time to have a hot, relaxing bath to unwind and process my thoughts. Laying in the tub I tried to tell myself that it is okay to have these thoughts. That this is actually a stage of grief. Just because someone is dying doesn't mean they will be an angelic, perfect person that you can't get frustrated with. Especially not a baby. Layla is still a baby. And in fact an extra special baby. With special needs. I do believe that I have an extra dose of patience and strength with her because of the fatality but it is getting harder all the time. 

The countdown is on for next Wednesday. June 3rd. Both sides of our family have this day etched in their minds. I don't think I will ever forget this date. There's a lot riding on this appointment. We meet with the neurologist from the children's hospital. He's our foot in the door to the rest of the specialists we will likely have to deal with to help Layla. I have my list of questions ready. Hopefully he has his ready as well. I'm praying he is really helpful and informative. We are going to push for the feeding tube. If it's inevitable than I'd rather get it done asap. It's just too hard for me to be solely responsible for her life.. Trying to get her to feed when I know it's hard for her and messy and she cries half the time. Plus both Aaron and I think she still hasn't put on any weight. She seems skinnier. She's 9 months old and survives solely off breastmilk. I know that's not unheard of but I feel like this is our next step. With her poor swallowing half of it just ends up on me and a receiving blanket. I think that maybe a tube would help her feel more full so I wouldn't have to feed her as often, would help her put on weight and give me opportunities to spend a couple hours apart to go to the movies or out for dinner or a drink. Something.. Anything. That would give me the rest to have more strength for her! 

This girl should win an award for the best pout face.