Sharing with our girls

A few days after our visit with the neurologist we decided that we needed to tell the girls about Madi.  We were concerned about when to tell them and then how much information we should give them.  With school starting soon it seemed like a good time to let them in, at least a little, on what we know so far.

It seemed best to just give the girls a little bit of information and then let them ask questions.  We wanted them to understand that Madi will progress and reach milestones at her own pace and that they shouldn't compare her to other babies her age.

Telling Alex separately from the younger girls seemed like the best approach.  We knew she would ask some hard questions and have a better understanding of how this can affect Madi.  And man did she have some hard questions.  She wanted to know if Madi would have to be in a wheelchair.  We told her we didn't know.  She wanted to know if Madi would be able to learn like she and her sisters do.  We told her we didn't know that as well, but she was meeting those benchmarks at the moment.  She also asked if she would be able to speak.  AGAIN we had to tell her we didn't know.  It breaks your heart to see your eleven year old cry and realize how much this is to take in at her age. 

We waited a couple days and then told the middle three girls while we were eating dinner.  They didn't really have any questions.  I don't know exactly how much they understand, but they seemed to take it in stride.

We chose not to tell them about her cerebellum, we didn't see how it would benefit them to know this.  All they really need to understand at this stage is that it will take Madi longer to learn some things and other things she may not be able to do.

I feel a little bit of relief now that they know.  When people come up and ask me questions or want to know how things are I don't freak out or worry about the girls overhearing.

Right now, we are just taking things one day at a time.  We continue to do physical and occupational therapy once a week.  I am so relieved that we will soon be getting into a "normal" routine, whatever that looks like!   It has become apparent that any new information regarding Madi is going to be slow. We won't know anything new until after the holidays when the test results are in. 

Below is a video of Madi rolling.  It's amazing to look at her.  This video was taken a month ago.  She is now a rolling machine.  She continues to push herself to be able to do things.  Contrary to what our research says she is making strides in her motor and cognitive development.