Ranting while in the PICU

Prematurity, especially extreme prematurity sucks. It's such a compound issue, it might as well be a diagnosis in and of itself. Not much is "normal" when you have a baby half way into your pregnancy; and the lasting impacts are *almost* given. You end up having a child/ren who have complex, scary, and critical health issues...these usually take the form of respiratory illness, GI issues, growth and feeding issues, and neurological issues including seizures. Our major issue is respiratory. I should shut up and be thankful this is our only *real* medical issue. There is also the assault on their eye sight and hearing. Both kids will probably end up needing glasses...but again I should be thankful here as well. There are also the physical wounds, which seem so unimportant in the grand scheme of things, but it actually SUCKS that your poor child has scars ALL over their bodies. It sucks even worse that your child/ren had to endure all the pain which resulted in all these scars. It also sucks that prematurity is a direct assault on the brain, altering anything *normal* about development. It sucks that kiddos struggle to sit up, to crawl, to stand, to walk, to hold a pencil, to build a tower of blocks, to talk, to understand, to tolerate certain stimuli, to handle certain textures...and there are kids who not only struggle to do these things, but never will. That really sucks.
It sucks that more people don't understand prematurity, so they don't know why our kids are in the hospital, can't go to play groups, need to wear tubing up their noses, or get mist sprayed in their faces, or end up in the ICU with a cold or asthmatic symptoms. It sucks that people don't understand that giving your son a push toy isn't going to magically make him able to walk, or that repeating a word over and over will not enable him to say it at 2 years old.
Most people probably assume that I'm strong, don't feel sorry for myself, and hold it together, well mosty they are corect. But when I let myself "go there" I feel weak, I do feel sorry for myself, and I wonder how I hold it together. I feel my kids really got cheated...we all did. Prematurity is so unfair...the pain that accompanies it...physical and emotional is really damn unfair.
I know this is a rant, but of course I'm feeling down...watching Serena take two steps back again (O2 back up for her to maintain sats while asleep...unable to make it 2 hours without a treatment.) But she is not currently at risk for being intubated, and for this I am of course relieved and grateful.
It's crazy, you feel guilty complaining or expressing feelings related to premturity because you know you should be grateful for your child's survival...that so many others do not have their child in their arms, but instead must carry them in their hearts. You know you should be grateful for what your child CAN do, because you are aware of how much risk they were at to do less. And you feel guilty saying anything because you know children who struggle more than your own. It's a perpetual cycle of trying to acknowledge your feelings and feeling validated that you have a right to be angry and upset about what is happening to your children, and at the same time balancing this with feeling grateful for their lives. It's a mix of emotions that can sometimes overwhelm you. It's par for the course for us...I hope one day there won't be anymore *new* "us."