There is an article that I want to share. It is about PTSD that parents go through well after their children are in the NICU.

http://www.nytimes.com/2009/08/25/health/25trau.html?pagewanted=1&_r=1

This article just really hit home with me, not just because of my NICU experience, but just with the ongoing issues we constantly face. I am extra emotional right now anyway because of what we are currently going through with each of the kids.

Even at Ethan and Emily's age, their experiences do have an effect on them. When they are taking their baths, there have been so many occasions when they will point out a really good vein on their body and in an excited voice they will tell me how easy it would be to get blood out of that one, or how that would be a great IV vein. The really sad part is that they are SIX YEARS OLD!!! Emily talks about how the worst part of brain surgery for her is the dressing change on her wound. Ethan's biggest dilemma in the hospital is whether he wants a cannula or mask for his oxygen. Right now they are so very resilient and can easily move on with their lives, but I know there will come a time when it won't be so easy for them.

As for me...on the surface I do a great job of being "the strong one". I get up each day and do what I need to do. I guess the alternative is to bury my head in the sand and wish it all away, but that won't make it actually go away. One of the things that is hardest for me is that once we get past a really tough time, everybody around me expects everything to be perfect and "back to normal". And since my kids don't have obvious disabilities when people look at them, they really expect everything to just be okay. Some days it is, but there are some days when it is not okay. The emotional scars that I have run deep. And it bothers me more than I can tell you when I see parents of healthy children not realize how blessed they are.

I struggle every time I watch my daughter in pain. It is a very helpless feeling knowing that there is nothing I can do to help her. I keep searching for answers from doctors and I am very scared that I will one day be told that there is nothing they can do and she will just have to suffer. And I have a hard time every time I watch my son struggle to breathe. Or when I see his oxygen levels drop and I quickly say a prayer that his little body will be able to recover.

It is also very hard to handle comments like "Emily doesn't LOOK like she has a headache". Well, no, at the moment she doesn't. She was given the opportunity to lay down and let it pass. If any of these people were in our house when I have to watch my child ask me to pull her hair up because she thinks she is having another shunt headache and is going to throw up, well...maybe then I might get a little more understanding. We can't lead a normal life. No matter where we are, we have to always have a contingency plan for a bad headache episode. And both of my kids have had to sacrifice and give up things because the other one was sick at the moment.

The thing that really upsets me is that I let any of this bother me at all. I know how lucky we are to have our children doing as well as they are. They were born 14 weeks premature. I know many people who have children that were born at a later gestation and have even worse problems than us, or worse yet...their child(ren) didn't survive at all. So on top of all of the emotional scarring that I have, I also hold a lot of guilt inside for the few moments when I feel myself getting down or upset about something. I am one of the lucky ones. Despite their health issues, my children are able to run around and play, they are able to learn, they are able to walk and talk (which is something that we were told Emily WOULDN'T be able to do).

I sometimes dream of the day when my children will no longer have to go through anything. And I try to allow myself to picture when they are adults and how they will be able to function and lead normal lives. I dream about the day when I will actually be able to get back in the work force and hold down a job without having to need too much time off to care for my sick children.

For now, I just try to get through each day. I always try to cherish every moment with my children because I never know what the future will hold.