You're not in Kansas Anymore!!!

Little by little things are getting better...I went to a party last week and was actually able to tell new people about losing Sophie without totally losing it...I worry about being "the mourning mom" though and that people might think it is an inappropriate thing to talk about... I am learning to be more private with my grief, but I also need to talk about Sophie, I can't pretend she didn't exist, that I didn't just lose her a mere 5 months ago...I told Mike I'm scared about the time when it will be longer that we haven't had her than we did have her (about a year from now). It seems crazy, it's all crazy this new "surreality" as we like to call it.

Mike and I started attending a bereavement support group at Children's Hospital this week. It meets Monday nights. It was very emotional...I started crying when we sat down--before anyone had spoken a word. I was the only one crying for a long time, and that scared me...the group is for parents who have lost a child in the last 18 months, and I know things get better with time, but I had a hard time believing that things got that much better..in time everyone cried as we shared our stories. I guess it is shitty to say that it made me feel better, but it did. It was hard to listen to everyone's story....horrible things are happening to our babies, it is hard to make sense of. The facilitator told us to be sure not to take the burden of anyone else's grief home....Right...no problem...of course I could hear the story of the parents whose little baby got sick and was in the hospital for 4 months--getting sicker and sicker and finally dying and they still don't know what happened--and not cry for them when I cry for me. Of course I can hear the story of the Mom who has lost not 1, not 2, but three beautiful children in the past 3 years and not have my heart break for her...We may come out of this stronger by all being together, but we will be weaker at times knowing the pain and sadness we all bring to the room. I think the group will be a positive experience for Mike and I, but it scares me too...next week we "tell the story of our children" That will be heartbreaking I am sure.

Something that struck me so deep was the parents that do not have answers about what happened to their children. That the doctors would ever stop searching for happened. How can a parent go forward not knowing? Not being able to make the tiniest bit of sense out of such a devesating event? One parent begged her doctor for additional tests, but eventually the doctors just gave up. It all goes back to what the doctors are taught in medical school ---When you are on the prairie and you hear hoofs, don't look for zebras, look for horses--- I can't tell you how many doctors we have heard this from. I think what some doctors have lost sight of may be that they aren't always on the prairie. I mean when you have a baby in the hospital and that baby is rapidly deteriorating....are you really on the prairie in Kansas? Or might you just be on the savannah in Kenya????????

We are learning a lot about the search for zebras...doctors seem to poo-poo pushy parents that have researched on the internet, instinctively feel there is something more seriously wrong with their child, or push for more tests. I have heard so many tales in the past 5 months of parents who have provided their children's doctors the diagnosis--sometimes of a very serious condition. Mike's gut told him Sophie's breathing was related to the hemi-vertabrae and that the hemi-vertabrae and associated scoliosis were more serious--but evolution and education have taught us not to listen to our instinct--that the experts must know it all. We have found a chart in a medical textbook that links hemivertabrae and asplenia....how about that? We parents MUST advocate, push and trust our instinct because our beloved doctors are out wandering around the prairie admiring the horses!!!!! (Speaking of which, I'll get off my high one now!) I don't think doctors have any bad intentions, this is what they are being taught in school.....anyway, I'll save it for another day. BTW--I am going to try allowing anyone to post comments so you don't have to register......