thankful.

So rachel took scarlet home today. Tonight is their first night in their own house! She said she is beyond words, so happy and excited. Hospice is there but she isnt mentioning that publicly. My understanding was 6 months with hospice…but my mom corrected me today and said that these days, hospice can come in and out, maybe stay a while then leave if they arent needed, then come back again, etc. The main thing with hospice though, is that they cannot provide anything more than feeding, oxygen, etc. They do not do any major interventions to save lives. They are there to make sure the baby gets the food (tube and bottle of breastmilk) and oxygen she needs, as well as preventing infections and such things that come with having tubes. But they arent there to do anything that will prolong her life beyond what she is capable of doing now, with a gastric tube and oxygen. Thats what Scarlet’s parents want anyway. They speciifically said they do not want to see their baby girl in pain. Shes not in any pain now. She’s doing awesome actually, and thriving. Its just touchy and anything could happen, especially with her breathing (heart issues). I think about them all the time, especially when I’m putting Lucy down at night. I just cant help but be over the moon grateful for such an increbile blessing– Lucy.

She really is. I am continually amazed that God chose me- he gave this beautiful little girl to ME. I dont know why. She is mine and I am so lucky. I cherish her and I wont let him down. I wont let her down either. I do my best for her every day.

It is getting tough- parenting is hard work I am discovering! haha. I am starting to have to dicipline her more- as in punishments and stuff. They are babies to a certain point, but then they suddenly become old enough to understand and start to need more boundries. She is testing the limits daily. One of her big thrills is rolling over on the changing table while I’m changing her poopy diaper. She knows its not part of the diaper changing process, and she knows she is hindering me from wiping her poopy butt. But she does it for the thrills. Today I couldnt take it anymore, and I knew I needed to start LETTING HER KNOW that we do not roll around and laugh when mommy is changing the diaper. She has got to learn. I am so darn loving and easy with her and she has no rules or limits. I’m working on that. Today i really used my mean mommy voice and told her LUCY MARIE, STOP IT NOW. MOMMY IS CHANGING YOUR DIAPER. YOU HAVE TO LAY ON YOUR BACK! I dont yell loudly at her ever, but ive realized i am half smiling even when im "yelling" at her, and she thinks its all funny. She didnt today! I didnt laugh and I was very stern. She stopped right away. My mom says she needs a time out chair. She’s been too young to understand time out up until now, so i havent even thought about it. But i know she’s ready, and would understand. She’s started to test me by hitting me when I wont give her what she wants. This is all so new for me, just in the past week or 2, and I am starting to form a plan. I want to be as consistent as possible so she knows whats acceptable and whats not. Hitting me in the face is not acceptable. If I dont teach her that though, she will keep doing it. She is a baby and doesnt understand. But she will learn if I teach her. She is really smart.

Parenting is hard. Caring for a sick child is hard. Juggling a million things at once as a mom is really hard. My heart goes out to some of you other moms whose diaries i read. I cant imagine being in your shoes. Sometimes I think I’ve got it hard–no help from husband, nursing school, work, toddler, no family or support system around. But HOLY HELL i dont have it nearly as bad as many women I know or read about. It puts things into perspective and makes me appreciate the things I do have.

I need to write an entry soon about my in laws. But before I do that, I will need to see the doctor and get some blood pressure medication.

E