Is there such a thing? Grief has been on my mind and in my heart as of late. My online network for the world of Down syndrome has been filled with negative postings. People who say hurtful, stupid, thoughtless things to parents who are on a journey they never ever asked for.
And it’s not just “people” – it’s parents, siblings, neighbors, clergy members, nurses, doctors…you get my point. I brought this up last night to some friends who stopped by last night. We live in the midwest. We get ripped on all the time for being backward, uneducated, unsophisticated, un-fill in the blank. However I personally have never had a direct unkind remark made to me about my daughter.
I have had to correct friends to not use the word “retarded” around me unless they are talking about it in a medical way. It is ONE of my sweet girls diagnostics BUT it is not WHO she is. I hate when someone refers to her as a “downs kid.” She is our daughter. She is our little girl who happens to HAVE Down syndrome. Dr. Down does not and did not own Down syndrome. She also has seizures. Should we call her “seizure kid?”
I digress. I can’t fight that battle every day. Only on Tuesdays when the sun is shining and I ate Rice Krispies for breakfast with a yellow fork.
My point is this. Larkin’s Place is a 5 million dollar project (add a pool and we need 11 million). I sat in a meeting yesterday with 16 others who are fighting for this to come to life. Their passion rivals mine. Their love for Larkin and the special needs community rivals mine. We live in the midwest and we are creating THE mold. There is no wheel to reinvent. There is no negativity. There IS caution and someone to always help us clear the blind spot.
Grief. The News-Gazette is writing our birth announcement in tomorrow’s paper. I have had to begin again to tell her story. I had to open doors that I shut, hammered in with nails, put steel over and set bombs around. Doors to grief that has been the fog around us since October 13th of 2005 at 1:46 in the afternoon. The thing about fog is you can still function in it. You can still see through it even though at times it’s heavy and dense. You lose your way sometimes but ultimately something or someone helps you figure out where you are.
I cried off and on reliving it. I still have a lump in my throat even as I type. I took a session on grief at Mirival Spa in Arizona a few years ago. I learned that we don’t move through grief, it moves through us. Grief never leaves us, our relationship with it changes. Now that Larkin’s Place is going to be out in the public, my heart and soul are in the public. Some might note that is already has been. Not to the degree it will be after Sunday’s paper. I am ok with it because I have to be. I am scared, worried and sick inside but I have to trust that there is a reason this is going out before I am truly prepared. I doubt I would ever have been ready.
Just like having a child. Just like having a child with special needs. Hold my hand friends and we will hug tight because I am going to need you to get through this. I need to go sit in a hot shower and cry this one out. Here we go…….