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Haley Is My Hero

"A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles."

~ Christopher Reeves



Spring Cleaning

Posted by Haley's mom on March 6, 2010 at 12:30 PM

We are in the process...or should I say, we have always in the process of remodeling here.  Such is the life of being married to a builder.  Like the cobblers children, we are the last on the list to get our work done.  Anyways, we are getting ready to do a major rooms change.  Haley's brothers, Peyton and Parker, are going to move into Haley's room and Haley is getting a new room.  (Hopefully we can add some theraputic element to it) 

Today I have been cleaning out her closet and her dresser.  It is bittersweet.  There are so many keepsakes and momentos that I saved thinking as Haley grows up she would love to see these things.  Like the ribbons that announced "It's a Girl" on the maternity ward.  Or the cute "collectibles" that were given in her infancy.  Since she was born in 2000 there were so many "Millenium" momentos as well. 

I am heavy hearted as I once again must bury the dreams I had for my precious daughter.  The goals and desires we had for her are now replaced with the reality of raising a child with a profound disability.  Yes, there are so many blessing that come with Haley's life.  However, it is hard to live in "Holland" (reference to a poem "Welcome to Holland~it can be read on my "Things Pondered" page) and keep dreaming of the exotic places you thought you were meant to go.

Last weekend the reality hit me so hard.  I broke down in tears and could not function.  I wished I could "resign" from being Mom all together.  Fortunately there are so many other Dravet moms and dads out there that can relate.  A phone call from one of them really lifted my spirits.  With my companions on this Dravet journey and my faith in God I was able to see life from another point of view.  My spirits are now lifted.  It is still is hard.  Especially the mourning of "what could have been".... 

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Reply Jessica @ One Shiny Star
12:06 AM on June 22, 2010 
I saw your video on Daddy Scratches blog. It's okay to cry, but always keep your chin up. As some one who works with special needs children, it is always refreshing to find parents like you, so dedicated, so involved, ready and willing to do what it takes. But don't forget - you need taken care of too.
Reply amy
1:20 AM on July 28, 2010 
I just learned of this syndrome today, and have been seeing Haleys story and others like her. I am 22, and not a mom, but I have a little sister who is to turn 10 in two days, so she's around Haleys heart and prayers go out for you and your beautiful daughter. I picture a day when the two of you will be together in Heaven, and you won't be bothered by seizures or anything. According to God, there is a cure. Hang in there, it won't last forever;) God bless you and yours.