There is something good in Every day- Living with Spinal Muscular Atrophy Type 1

Lizzy wanted to call the Easter Bunny directly. She said" I NEED to talk to him!" Being 7 and half I am thinking its time to tell her the Easter Bunny is make believe. But.... do I want her to bring her out of believing in magical things? I was younger than her I found out there was NO Easter Bunny. Hmmm what to do?

Lizzy has had  her good days and bad days this week. She was off bipap till 10pm last night and today she was on it around 1pm. I feel like I am not doing enough to get her well. Is she going to be weaker or is she just this way until she heals completely? I over think everything in her care right now. Am I doing enough? Am I patient enough? I am not used to her being like this and I feel such a failure these days because she is not totally recovered yet. I asked her what is going on and she said " I NEED my BIPAP NINA."

I try to stay positive but it seems I am having a hard time lately . Its feels like I am chained to my house right now and the walls are closing in. I pray to get me through this tough time but it seems I am not feeling any better after being home. I swear I am not selfish and all I do is want to care for Lizzy. No one is giving me a break here. Its like I have always have been right there for Lizzy but I am feeling emotional these past few days and I do not know how to stop it. Its like I don't want to leave her side but its like I can not breathe. I feel so guilty and helpless feeling this way. I love her so much but her whining and fighting me on treatments is wearing me out. I need some positive energy here. I think there is many factors involved responsible for these feelings.  Paul still is not working yet e so I am worried about that. I also have a "Care Plan" tomorrow at the nursing home with my mom's care team. That is also been hard on me. I know they say God never gives you more than you can handle but... geesh I think he trusts me too much these days!

There has been a few things going on with Lizzy's dad that makes me crazy too but I should be used to that. He does things to get me upset daily when he is around.  He torments me. Christen ignores it or says Mom Get over it.. But you know I have gotten over it enough and its time I have others back me. I just do not want him around so much. I do better with out him and me in the same room. He is so negative all the time that he sucks the positive energy right out of me and everyone around him. Lizzy does not need that.  Sorry, I had to vent.. Yes ,I have forgiven him many times and he always goes back and does the same thing . How can you keep forgiving someone that keeps repeating the wrong that they have done. Yes, I pray for him every night. I usually do not bring him up in posts but I feel so much better venting about it. Its a constant battle with him.

Maybe,  I am just plain tired. Maybe, I will get over this "Hump" in my life right now. Maybe, I will just start walking like I used to and clear my brain every night if Spring ever decides to get here. One thing I will NOT do is give up on Lizzy. I know she is struggling right now but she is  fighter and she will get through this and be stronger. I know she will.

"Every day there is something good in it"  I just need to remember that. I have so many great people in my life I should remember that too. Keep sending those prayers. We need them.

"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth