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Timing of Diagnosis

Posted by Haley's mom on March 10, 2011 at 7:03 PM

Everyone's journey is different with this syndrome.  We traveled a long road full of hope that Haley would out grow her seizures and be a "normal" child.  "If only we could get the right mix of medicines then the seizures would be less,...then for sure she would be 'normal'", is what we thought.  That is what I can remember from the good days when Haley was young and we had no official diagnosis. 

I know some of my family members were upset that the diagnosis for Haley took so long, but recently I heard of someone's daughter being diagnosed who was 43 years old....wow, she is as old as my younger sister.  I can't imagine how that mom has made it so long without knowing, yet knowing their child was different.  I know for us the time not knowing made me stronger, wiser, and helped me grow in my faith.  For at times all I had was my faith.  Not knowing made it easier to decide to have ONE more child, yet God in his infinite wisdom, gave us twins instead.  I am not sure if we would have had more children, if we had known what life was going to be like with Dravet syndrome.  Ignorance was bliss in this department.

I know a mom whose child was diagnosed really young, under a year.  The doctor that diagnosed her child, then told the mom that her baby would not live to see five.  Can you imagine living those years with that prognosis?   I am happy to say that the child defied the doctors prognosis and is almost eight.   But having that diagnosis early has its blessings too.  You know what drugs to avoid.  You know in advance that you need to get your child involved in multiple therapies to improve their quality of life.  It is a bitter pill to swallow so young, but you at least have a path to follow.

So which is better?  Is there really an answer?  I know God gives us what we can handle when we can handle it. Like I said before our family was much better knowing later or we might not have siblings for Haley.  I am who I am because of what we went through.  I learned doctors do not know everything, that they are "just practicing medicine".  I learned a lot about myself and others.  Some people can be very uncaring and cold...and others can be surprisly compassionate.   

I feel very blessed at this point in my life.  It is hard to convey that to someone who is newly diagnosed.  When I hear someone has been diagnosed after a time of searching, there is mixed emotion.  I am very happy that they got their diagnosis, but at the same time I am bummed that it is THIS diagnosis.  However, we are all in this together and we can band together to help one another.  We all become part of an extended family that understand each other's "normal".

I saw a quote at one of my favorite restaurants, Food for Thought in Williamsburg, VA.  I wish I would have written it down.  It went something like this, "Life is not fair, it just is...it is how we react to it that makes all the difference".  I really like that.

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1 Comment

Reply Niki
9:05 PM on March 11, 2011 
Having come from both ends of the spectrum, I think that ignorance is bliss in most cases. I did not get a diagnosis until I was almost thirty. The years of struggle of not knowing WHY, made it so that I am the oldest of five children. It was so hard, but my parents truly believed that I would get better. The relief I felt when I got the reason, some little gene mutation, is inexplicable. Yet I know, Cole will never get better.

Having a diagnosis fairly early for C, has made all of the difference for me. However, I am now one of those people who will not be having any more biological children. I just know too much. Having cold, hard genetic facts that I have over a 95% chance of having another child with Dravet makes it too big of a gamble. I think that everyones journey is different with this disorder; and every single story can help someone else. I know that Hayley's reaches many hearts. Love you!