Mom to Mom

This is how grown-up and "Kindergarten" our girl has become.  I wonder every day at the growth she is experiencing in school, and at home.  It is hard to put into words, so I will call it "learning the ropes".   She is figuring out how the world works and is learning to adapt her behavior.  Hard work.  Every day, she shows us new skills and knowledge and it is thrilling to see!

I was contacted this week by a mom who could be me two years ago.  "K" has a daughter who is almost 3 and her daughter has bilateral Sturge-Weber Syndrome like Angie.  K's daughter is experiencing status epilepticus, which is a medical term for seizures that are nearly impossible to interrupt and last long periods of time.  Status epilepticus causes serious developmental decline.  She has these major seizures every month or so and the doctors are running out of options for treatment.  Deja Vu?  I think so. The doctors have said surgery is a longshot, even though that is their recommendation, and they have given the family little hope for long-term seizure control.  

Oh no you don't!!  We know better.  K and I have had numerous email exchanges and with each reply from her I hear her hope growing. She is terrified and desperate.  I completely understand.  And we both know that each child with SWS is unique.  But there IS hope.  I would be lying if I said that meeting K has not been as beneficial for me as for her.  My own hope is renewed when I recount our experience and I know that God is using Angie's experience for good.  I look forward to following her daughter's story and I am hopeful that another precious child can experience the renewal that has occurred in Angie.

This is what life is all about.  We all have experiences that can be used to offer hope to another.  I know we do.   That is how God set this life up for us.   Every single one of us.