Jude's condition

Jude slept all day yesterday until he finally woke at 9:45 last night. Once he woke up he gave me a little grin. I heard his alarms go off throughout the night but I could tell he always recovered well. This morning he looks better! I am guessing that combining the steroid with the antibiotic made him feel better. 

I say the following line over and over because I struggle with it. I think I struggle with the guilt from it. I love Jude and I always want him with me but I wonder if any other parents with a chronic child sometimes feel guilty for getting their child better only to have them suffer again. Of course I want him well and without pain, but does anyone understand what I am saying? It's like we get them better knowing they will go through all the pain and agony again and again. It's like a merry go round that never stops for them. Jude's lungs do not have the capacity to ever return to normal so it's all about keep him comfortable and well now. However getting him well means he will suffer again. I don't like him suffering but I don't want to lose him! I don't like watching him gasp and retract for air. I don't like his fevers and him moaning in pain. I hate he has to have all these tubes and wires running into his bed and constantly attached to him. He has to get tired of them yet he manages a little smile even in the moments he is so very sick. 

 I guess I will just look at this positive and be so happy that he looks like he is beating yet another illness and this time he did it without ICU! I will have him in my life a little longer and get to kiss his sweet smelling curly hair! Strong boy!