December 2008

"How are your kids doing?"  Is a question I hear almost daily.  I know some hesitate to ask because they do not want to hear bad news about Haley.  The question is a difficult one to answer on a daily basis.  One day can be terrific for Haley.  She can do well at school, want to eat, be full of laughter and very agreeable.  The next day could be a different story, three seizures before waking up.  Valium administered....then we have a walking zombie...sometimes.  Bobby came to me one day telling me he liked how a friend inquired about Haley.  He would say, "How is your daughter, today?"  That one word makes all the difference.  Dravet syndrome is a day by day experience.  There are not many adults known to have Dravet.  I am sure they are out there, they have just been misdiagnosed.  We thought it was bad to wait close to seven years for a proper diagnosis, but then a mom joined the IDEA League family forum whose daughter had just been diagnosed at 22 years old.  My heart just broke for the pain this mom must have endured through the years.

Haley did well today and is vastly improved from her catatonic state that she was in since before Thanksgiving.  We saw her neurologist last week and he 'tweaked' her meds and presto we have personality again!  Fortunately, Haley is a very pleasant and loving child.  That makes it easier to cope with the syndrome.

Some exciting news for Haley is that we are awaiting word to see if her "Make a Wish" trip will become a reality.  Our family met with the Make a Wish team on Sunday after Thanksgiving.  Haley had three seizures that morning and a dose of valium.  Therefore, she was not real communicative, but she did not have to be.  Who needs to be when you have two excited brothers saying everything they would like to do?!?  Haley's wish is to meet Cinderella and her "friends"...her friends are not the other princesses ...they are the birds and mice (you know, just like the story reads...Haley does...she has memorized every book).  They are going to try to arrange a meal with Cinderella.  It should be exciting.  For me it will be back to my old employer, I worked for "THE Mouse" in 1988.  It was fun!

This year has been an incredible year.  The America's Giving Challenge started the year off with a bang.  (You can read about this on "Haley's Story" page)  The we participated in the National Walk for Epilepsy in March.  This was the first time we were surrounded with families that truly understood what our lives were like.  One mom said it best when she said, "it was so nice to just be able to talk and not have to explain my child".  Then in August we met families from all over the globe at the IDEA League Second Bi-Annual Family and Medical Conference.  What an honor it was to meet Dr. Charlotte Dravet herself. Being in Chicago with 140 other families was surreal.  We almost felt normal.  It was strange to see a complete calm room when a nurse would walk in and say a name , "is having a seizure".  There was not a dry eye in the house when doctors would present video clips of their patients having seizures.  What a bond we share.

This weekend ahead David Nova has invited Haley and her family to attend his fishing tournament awards banquet where he will present Haley with a check for the IDEA League.  Two parents are coming in to town to join us.  We are excited to see them again!

Along with the highs of 2008, there were the lows... So far since we have been on the parent forum five children have been lost to Dravet syndrome.  The first two were from overseas.  The third child was from Illinois.  His father, Scott, shared his pain with us on the forum and I am so thankful he did.  Because of his transparency we began to see that we need to treasure every day with our children.  We should not wait until "we get them straight".  I admire this father greatly.  Even though his son is gone from this earth, he is keeping his memory alive with all he is doing for the IDEA League and other parents who have lost their children.  Thank you Scott for your strength and courage, your son would be so proud of you!