For the last two months I’ve been back at work which is to say I haven’t been around that much for Maggie.  I’ve missed dinners and breakfasts and therapies and school drop offs.  I feel like she’s growing up so quick and I don’t like missing any of it.

It hasn’t been easy to be away.  But at the same time, it’s impossible to be there every minute of every day.  As much as I’d like to pull Maggie out of school, keep her safe at home, work on therapy 24 hours a day, and never go to work, that’s just not a reality.

I’ve finally come to terms with the fact that I can’t control Rett Syndrome.  I can fight it – sure.  But I can’t control it.  I can’t make it go away.  I can’t make her talk.  But what I can do is I can provide for her and give her the best life she can possibly live.  I can enjoy her smile.  I can make her laugh.  I can help her do the things she can’t do and hope that over time her body will remember how to do them.  I can keep her strong so when the cure does come she will be everything she can be.  I can marvel at how hard she works and how hard she tries.  I can find so much joy in every surprising breakthrough – every time she does something she hadn’t done before, finds a way to communicate what’s in her mind, or shows off her mischievous side.  I can relish in every small step forward she can make.  But I can’t help her make every one of those steps.  I have to let her make some by herself.

I guess that’s growing up.  For me and her.



Leave a Reply

Your email address will not be published.