Yesterday was frustrating. It was extremely busy at work and when I got home Jude had not had a good day. He was very rigid and would stiffen up and cry out. It would help if you would lay down and hold him but he was still having issues. I tried pain relievers and Ativan but nothing really helped. So I held him on the couch for about an hour and after the Ativan fully kicked in he seemed to relax a bit. This didn't last to long and when nurse Candice got there at 10 we were ready for her. I felt so bad for Jude and this seems to be an ongoing occurrence lately. I am not sure if it's all the weather changes we have had or if he is in pain from something else but the situation hasn't been easy. It is not easy to watch your child in extreme pain and not be able to do anything to relieve his discomfort.
Poor Jude I felt so sorry for him but honestly I had hit a wall last night. I was exhausted and tired of running this routine every single day between work and home. Sometimes I feel like I don't get any breathing room and never get time to catch up. It's a balancing act of emotions, for instance I am so grateful for Jude that I feel guilty any time I feel tired or needing a break from everything. I am so grateful for our nurses that I feel guilty being overwhelmed by people in the house all the time. I am NOT the weight I want to be at but as evident from the above paragraph when I got home there was no time to walk. I enjoy taking walks with Leibe and it's the little exercise I get. I need time alone with my husband who I miss dearly even though we live in the same house and sleep in the same bed. I cling so tight to Emily because I feel like I am always waiting for the other shoe to drop that I drive her crazy sometimes. I am grateful for people in my life but I get so annoyed when people text me after work that I want to throw my phone against a brick wall. However if I don't hear from people I feel alone and sad. It's like a hamster in a wheel not knowing when to get off or what to choose.
I think it's just the life of being a special needs parent. Today I have already called the nursing agency regarding a fill in nurse for tomorrow. Mike made two doctor appointments for Jude next week and talked to the hospital about using their oxygen source while he waits in between appointments. I tell myself this life is exhausting but it has purpose and meaning.