Wednesday, October 16, 2013

When do expectations become unrealistic?

After Ronan was born, Paul and I had to shift what our hopes and dreams were for our son.  That is absolutely not to say that we stopped dreaming for him, but rather changed how we thought of those dreams.  We went from the open ended, lofty thoughts of first words, first steps, and all the other "firsts", and were hyper focused on getting Ronan healthy.  We set goals for his weight gain before his open heart surgery.  We set goals for getting hearing aids.  For helping his vision.  For assessing his growth.  We compartmentalized and worried just about the next steps, not what was three or four steps down the road.

It was just too overwhelming.

Then, slowly, Ronan got better.  His appointments grew further and further apart.  Ronan went from weekly cardiology follow ups, to monthly, to every six months.  He went from what seemed like daily check-ins with our pediatrician to normal well-child visits every year.  During Ronan's first month of life, we literally had 42 doctor appointments.  I counted.  We had two to three a day.  Last month we had three doctor or specialist follow ups.  Our focus shifted to Ronan's development, and we started setting more goals...  By focusing on the next steps, we've been able to move Ronan forward.  He's had just an explosion of gross motor skill developments.  He's signing more often.  He's making all kinds of different sounds.  He's stronger.
Having fun at PT!

Our end goals have always remained the same for Ronan.  We want him to have a happy and healthy life.

Paul and I will do whatever it takes to get him there.  Whatever it takes. 

As part of that, we want him to walk.  We want him to talk.  We want him to have the same opportunities as other children.  We hold no illusions about what a CHARGE syndrome diagnosis may mean, but we have to have these expectations for him  If we don't have expectations for Ronan, he will never meet them.

One of the biggest challenges of caring for a special needs child is assembling a team who believes in your child as much as you do.

Not quite sure about the pumpkin patch
Everyone must be on the same page, and have these same expectations.  We have been lucky so far with the doctors, therapists, and specialists we have worked with, but I am starting to find that not all of them share in our end goals for Ronan.

I wonder, though, is it their job to set us straight if we truly have progressed from realistic to unrealistic expectations?  Or is it their job to support us, no matter how far fetched our goals may be?
It is a struggle to decide if communicating our expectations to our team for Ronan is enough, or if we need to search for a new team member when expectations do not align.  There is a long road ahead of us, and we need to have the right people supporting Ronan, and supporting us...