Needing a lesson...

Tonight I am still struggling to find the answers I have been seeking for over 2 years. How do I live in a hospital? How do I balance a normal existence with having a sick child? How do I cope with the fact, I hate calling him a sick child? I know lots of moms have this same problem. Lots of mom have no idea what I am talking about or even that places full of sick kids exist. I think when your child, who has been sick, is getting better and spending more and more time out of the hospital, finding your place is even harder.  You are not the mom of a normal child, who can play with others and attend mom's day out, but on the other hand, you aren't a long term resident of the hospital anymore either. It's lonely. I am so blessed to have some amazing moms who are stuck in the middle with me. Mom's who are also trying to find peace with everything we have gone through, while trying to look forward to the future and make life as normal as possible for our children. Having only child makes it easier to be back and forth, but plenty of moms have both and have to balance being at the hospital and then normal at home with the outside world. I think this time it's much harder to be in the hospital because we have been home for so long. Being home spoils you. It looks like normal, some days it feels like normal and as hectic as normal can be- it feels good. I miss home. I haven't been home in over a week. I miss my bed, I miss my comfort zone. It looks like after today we will be here longer than I had thought, so a gray cloud has come over me. I posted some funny videos on my son's site last night, but today with a high fever, I have stopped laughing. Sometimes, I dread posting a negative update. I feel like I am going to disappoint all the people who have stayed with us, prayed for us and wish the best for Little C. I don't want to read comments that start with "I'm sorry he is sick again". Every time he takes a step back, all those feelings of guilt and what I could do better come up.  It's not worth saying it's not fair or why me. I am long past that. I can only focus on doing my best to pray for his healing and hug him as often as possible. He loves to be hugged. I love hugging him.