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Friday, August 26, 2011

A day of HOPE.......

I am depressing. I will admit it. People don't like to talk to me sometimes because I am a living breathing reminder of the worst fear any parent could face. My daughter died at 6 months and 5 days. The problem is, is that I will talk about it. Go ahead....ask me. I am not afraid to tell you about the unspeakable anguish and pain that comes along with this ordeal. The reality is, is that other parents don't want to hear it. They don't even want to think it! Don't speak about the fact that children die too. It is too hard for most parents to even fathom that thought. I agree, it is hard. But so is losing your child and having everyone around you scared to mention their name for fear of hurting you. What hurts is you not saying anything. Pretending my child never existed. That hurts a million times more than you asking me about her. I know it is painful for you to listen. My child has been gone ten years and I still feel the pain of losing her. The grief isn't as fresh as it was ten years ago. Time has scabbed over the never to be healed wounds. But the pain and reality of life is there. Everyday. And I think about her with each passing occasion. Every year when school starts, I toy with the idea of what she would be like, look like, act like. Every holiday, birthday, death day, and every single day in between. I live with the very real finality of death. Women that suffer miscarriages and stillbirths often do so silently. Carrying that pain around and never sharing it with anyone. The pain is just as real for them. Their dreams shattered, their hopes crushed. It is a heavy burden to bear. Don't discount their pain.

I lobby for change in my daughters memory. One thing parents that lose a child is most fearful of is that you actually WILL forget our child. To people that did not know me ten years ago, my child probably doesn't seem real. She didn't mean anything to you. To you she is a cold hard piece of black granite with a name inscribed. So in hopes that her short time on earth brought with it some positive for the whole world, I push for change. I also speak out. Baby/Child loss is not a taboo subject. It is very real. So grab some tissues and suck it up. If you want to be a good friend to someone who has lost their child....don't disappear, don't expect her to be the same person she was before the loss, and least of all never assume she doesn't want you to mention her child because it is just to painful. Often you will find that it is quite the opposite.

1 comment:

  1. Hi My name is Laura and Im also a Proud Mom of a CHD Angel(Timothy.. 10-11-94 to 6-15-95, ASD/PS and an Undiagnosed Syndrome). Your blog is awesome...Everything you have mentioned, I can so relate. My Son, Timothy, lost his battle when he was 8 months old...Im also very open when I talk about my kiddo. Your so right about folks freaking out when mentioning our Angel's. It is a learned Art on when and who we can talk too about it. The more time passes the more Im realizing that I can't aford to protect folks feeling's...
    Im slowly learning about CHD and SWAN(syndrome without a name) advocacy. Im still hesitant about maybe making it into a career so to speak. Im coming out and learning how to advocate and help folks understand what CHD and SWAN is. I've created (2)website's honoring our Angel's and Warrior's. It's only been in the last year that I started to do all of this. It's been 16 years since Tim has passed but like you know grief works in mysterious and weird way's/time's. You have to take breaks...Us Angel Mom's will never get over the loss of our kiddo's. We just learn a different type of normal. They will always be in our hearts...Im scared to forget too.. I have a momento's box of some of Tims' stuff and every so often I'll take a peek...Your right..it hit's like a ton of bricks...The smell's, his passi, his last blanket, his first and last bracelet, a few strands of his hair in an envolope given to me by his nurse's, shampoo, desitin. It's hard at times to look into the box but also Hard to close the box. Unfortunetly we belong to a club no one wants to be apart of(Parent's of Angel's). Somehow, like yourself, Im trying to make a positive out of a huge heartbreaking loss. Thank you for not being afraid to share your story because it helps me to do the same. We need to, so that we can help our Warriors. The pic at the top of your blog is a cool camera shot of the family..
    If you would like to connect I have a FB site under my name and 2 major website's(still under slow construction..). www.lt4swanchd.blogspot.com/ Please don't be shy..
    Laura C.
    Proud Mom of SWAN and CHD Angel, Timothy

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