Languages

If you ‘ve ever spent any length of time in a hospital, it soon is clear that it is a world in and of itself. There are places to shop, eat and maybe gardens to walk around. Along with this, there are different races, cultures, abilities, disabilities, age groups and languages that are spoken. To be precise, two major languages are spoken, Family and Medical. It became clear to me very quickly that if I were going to be of any help to Justice or at least not make things worse, I was going to have to learn this Medical language.

What I knew was Justice was very sick. Some of the doctors didn’t seem to be very optimistic about things although they were talking more neutral then negative since we arrived in the larger hospital. They figured she had a genetic syndrome of some sort, probably Turner’s Syndrome since she was a girl but were running tests to tell for sure.

They had mentioned Noonan Syndrome briefly and I remember thinking “I really hope she doesn’t have that Noonan Syndrome, I can’t imagine having to say that name to people. It sounds like something Mork says on Mork and Mindy. It’s bad enough people will make fun of her and assume she’s retarded but Ugh, I hate the sound of that name.” I know, very immature, but that was where I was at the time. I was sad, hurt, embarrassed, I felt I did something wrong during the pregnancy, I thought Levi would blame me and maybe leave me for ruining his child, I was tired and secretly getting angry at every mother I knew who’s baby was fine. Doesn’t sound like the hero mom full of grace that everyone pictures does it? It surprised me too. I didn’t know all that was in me. Where did it come from? I know now, it was just a process. I was shocked and grieving. It was normal. I was normal. It was something I had to go through, no different from when someone looses a loved one. Remember, for 9 months I pictured Justice the way I felt she should be. This healthy baby that would eat, drink and grow to look just like me and was now gone. Everything I knew was gone. My going back to work was gone. I just needed some time to adjust. I still loved her more than words can explain. I wanted her to live so bad I would find myself sitting beside her holding my breath in such deep concentration willing her to get better but I still was wounded myself. It would take years to start to heal and I’m not for sure if one ever fully recovers.

At this point, I was at a fork in the road, I could either, roll in my own self- pity or I could get up and learn what the hospital staff was talking about. Both of these options have their pros and cons. On occasion, I feel it’s my right to have a couple hours with the latter. However, I found a library with internet and started researching both Turner and Noonan Syndrome. This was before the internet really took off so it was quite an experience swimming through the research to find what I needed. Little by little however, I learned one word at a time.