Thursday, August 7, 2014

We met with a new neurologist today. I almost cancelled the appointment because I though it would be a waste of time and energy.  It turned out to be very helpful and I'm glad we went.  She was very thorough  and answered many of our lingering questions we've had since the seizures began.  I feared that she would try and push all kinds of meds on us when she found out we were only on two.  Many Dravet children are on three or four anti-seizure meds.  She gave me the names of a couple of meds she thought would be good to try out next and told me to research and make the decision.  Honestly they all come with an insane list of side effects and right now I'm leaning towards no meds at all.  I know that if her seizures increase and she starts having them every day I will have to rethink and pray about what to do next.  Right now I'm trying to listen to my inner mama voice.  

Earlier, I was talking with an old friend.  She was telling me about how her grown kids are doing.  Although we haven't seen each other in years we give these status updates now and then.  I thought about how we never really get to stop holding our breath and worrying about our kids even when they have their own lives.  That fear paralyzed me for a moment but then I remembered that my job now is to pour into them while I have them and to not waste my energy on worrying about their futures and possible misfortunes.  

These little people that I have been gifted, oh God, I hope that I don't mess them up too much.  They are my life and my hope.  I would walk to the ends of the earth and back for them.

“Be the one who nurtures and builds. Be the one who has an understanding and a forgiving heart one who looks for the best in people. Leave people better than you found them."


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