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"....