Good Grief?

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…….

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4 Responses to Good Grief?

  1. Barbie says:

    Darn it, Amy, you’ve got me bawling all over again! Thank you for the update. I know life has been too busy when I haven’t had time to check on my “lifelines.” Please know that even when I am silent, you and Larkin (and the guys, too) are always in my heart, and ever in my thoughts and prayers. I love you!

  2. Terry says:

    hello..a few tears fell over that my dear..The article was great..she is so beautiful so is her Momma! If I can help in any way with larkin’s place count me in..I pray for you all always..keep in touch when you can..tell memphis hello and to call once in awhile..Miss ya and love and my friend Jim capel

  3. carol says:

    I truly understand. God gave me my son 31yrs ago…at the age of twenty.He has downs. I encountered many many uncaring,unkind,and he was shunned. Well, GOD does not make junk. I recently published a book from 22years of journals. When my son was born, there was no internet or any resources. I wrote things down each night so I could empty my mind. I praise your strenght and voice. Love to you, Carol Surber. Google my name if you would like to preview the book.

  4. Melanie Bates says:


    I don’t know where to begin, my heart aches. The more I read this the more I dig into some of those very similar doors that I had to shut. In the growing of knowing why and where my place was at with Marcus I began to appreciate the journey that I had to walk with him. There is still a hurt in my heart only because I can handle the Down Syndrome part of his life but to add his kidney disease and knowing that at some point it is only going to get worse and then when he started to live his life and grow and we had just learned to deal with those two issue we were tossed that curve ball of a tracheotomy. Everything he loved to do, swim most of all, shower and swim in the tub, was ripped away all because of this hole that was drilled in my child’s throat. I feel you sister. Your words draw me closer because you speak a lot of what I feel I just don’t have the courage to bring it out. I hold those feelings in and deep within. Once again pure admiration for you, you are so strong in ways that I would love to be. Uneducated, no I believe you are a wealth of knowledge, sophicated, yes you are in so many more meaningful ways than the word alone can describe. You speak words that reach. Strong words that reach and your thoughts are priceless because they are the voice that needs to be heard.

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