update

   I had planned a topic to blog about when Josh told me to just blog about what has been going on and focus on my real life for a minute. Things have been chaotic the last few days, after weeks of being away from Josh we were finally reunited on Wed and we are hoping to be in our new home this week right next door to my parent's house where we are currently staying. The same day that Josh arrived my new tube feed formula landed on the doorstep, we had been waiting a month for it to get approved by insurance. The doctor is hoping that the higher calorie formula will work better since its less volume. The last two days have had me curled up on the couch crying and clutching a puke basin as the new feed ran inside of me. I feel blessed to have a man that loves me so much that he takes care of our son and me in the tough times.
   Sadly, the news on the health front is grave. The new tube feed is going in but we aren't entirely sure how much is getting absorbed and the tube site has started leaking quite a bit. The surgeon warned us that another site wasn't really a possibility espically this soon. After my last surgery to resite my tube she said that my intestines were so damaged they were lucky they found a place for my current tube. Our options are running out and I'm freaking out. I was determined not to go back on tpn until Damien was in school, at least then he was old enough to be away from me if I end up with a line infection or whatever. I'm terrified of TPN again mainly because its not just me anymore, I don't want to be away from my baby or from Josh for that matter and I know that once we start down that road again its only a matter of time before we start talking about our other options and they scare me. I'm twenty six years old and no where near ready to give up this life that I've only just begun living in the last few years. I want to see my beautiful son grow up, I want to teach him everything I possibly can. To be honest my biggest fear is dying before damien can even remember who his mommy was. I want him to remember how much I loved him and that no matter how sick I've gotten I've always played and held him when  he needed me. I want him to be able to picture me in his mind not go off of a picture and what his daddy and grandparents have told him. Maybe that is selfish on my part, I should probably just be happy that I've been with him this long but I'm not, there are so many more adventures left for us to have.
   Its so nice to have Josh here again, he is my person, my Johnny and I'm his  June. He is the person I don't have to put on the fake smile for and pretend that it doesn't  hurt when I'm ready to cry out in pain. He holds me and tells me its ok and that I don't have to be strong and hold it together all on my own all the time. He is the one that pushes me to hook up to my tube feeds when its the absolute last thing I want to do. He takes the brunt of my mood swings and bad attitude and he still stands by me reminding me why I have to keep fighting, why I have to hook up to tube feeds that cause pain that breaks through my narcotic pain meds like they are freaking asprin. I owe a lot to him, having someone that loves you with all their heart and puts up with you when ou are being a total jerk and cleans up your vomit that is a true gift. We moved here so Josh wouldn't have to deal with everything alone, when I need surgery or I'm too sick to be up and around with the baby my parents live ten feet away. Years ago I would have thought that a nightmare but now I realize that family is important. I blamed them for not helping me enough during my anorexia years but in reality they did the best they could. We were looking through an album yesterday and I came across the birthday party they threw for me the day before they admitted me to McCallum Place...I was a hallow shell of a person, bones sticking out and eyes gazing out from their sunken in shells. There is a picture where I'm blowing out candles in two cakes, one was a regular birthday cake and the other was a plain angel food cake that my stepmom had gotten in hopes that I would eat a few bites then cut to another pic where I'm not the center of attention but in the background you see me and my stepmom having some sort of animated discussion...we were fighting  over a ninety calorie piece of cake. I look back at the many battles she had to go through with me most of which ending with me flat out refusing to eat and realize how hard my disease was on my family too. I'm blessed that they still are willing to help me and  josh like they do everyday. Its nice not to feel alone.
   So, that was just a bit of an update, we are hoping to be in our place in the next few days which is only ten feet away from my parent's. Right now I'm focusing on getting my feeds figured out and probably setting up  a doctor's appointment and hoping that Josh finds a job soon. I think this move was best for our family and I love that Damien gets to see his grandparents , aunt and uncle, and his cousin everyday. Family can be the most irritating triggerring people but  in the end they are the ones that are still there with you when the goin gets tough