Day 220 hanging in there with the#faithofachild

I am trying very hard to stay positive but circumstances are making it difficult. I hope and pray that I learn every lesson from this so I never have to be in this position again. The next two days will tell if my journey gets better or worse. It's funny how 7 years comes down to two days. If all goes well I will get to keep my line have no infection and start IVIG treatments at home, which will hopefully get me off all these other medications. It is already too late if I have an infection because it is in my heart but I can't think that way. God didn't send me back from the day I died at age 18 to take me away from the family He blessed me with that could go on without me and has for quite some time, at least the real me, but don't deserve to have the mommy they adore even in the state I am in and I so don't deserve them but they don't deserve one more hardship. My baby girl goes to school with the weight of the world on her shoulders and it makes her so mad that most of the kids worse problem is they broke a finger nail or they didn't get to go to the fancy restaurant they wanted. I wish to God that was the worst thing she had to deal with but she has had to step up and basically run this household and to sacrifice having nice things because my illness costs so much. The craziest thing about it is they don't mind. They are just happy to get the little moments they can have with me. Noah is leaving so soon and she has always had her big brother to lean on and she is scared to death of that void being there. When I went to Jackson for my "experimental" surgery I wrote letters to my husband and all of my kids because I didn't expect to survive it, but I did. In 2010 I was closer to death than I had been since I was 18 and I tried so hard to hide that from my kids but they knew. I was so frail. TPN has put 50lbs on me and I have been off of that for 6 months and though I can not hold down much of anything I cannot lose this blasted weight. I learned that I have muscle weakness due to malnutrition and that is why my body is holding on to it, my body is turning my muscle and bone into food. If anyone knows of an awesome paying computer job in a beautiful place to live with healthcare that at the very least makes sense please let me know because I am ready to get out of this black hole.