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  • Haley's mom

Spring Cleaning

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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