Representing Still Parents

A non-profit organization that I work with held their 7th annual Footprints On Our Hearts Walk To Remember the weekend of Pregnancy and Infant Loss Remembrance Day. My husband and I had never attended a walk for our son before. It was an extremely emotional but comforting experience for us. While early on in our grief it was a mostly comforting to be around loss parents that had subsequent pregnancies, it is now incredibly difficult. Our positivity and ‘hope’ that we will have another child some day has all but disappeared entirely.

My husband gave an amazing speech at this walk. I was so proud of him for getting up in front of loss parents and the supporters of loss parents to give the perspective of loss parents that do not have living children. It is a perspective that is often ignored, as we all know, because nobody wants to think that it is possible to never have a living child.

I want to share the speech that my husband gave because I know that his words will touch all of you the same way that they touched me. I’m proud of him. He’s the father of my son and nobody can ever take that away from us.

“Fitting in was not something that I ever thought would happen for me. My ideas and thought processes tend to be different from everyone else. While that can be a lonely feeling, I had accepted that that lonely feeling would be a part of my life forever.

Then I found my wife who was equally awkward and socially displaced. We had each other so the rest of the world didn’t matter anyway. We had hopes for having awkward kids too, some day. Unexpected infertility got in the way for a decade, but in 2012 when we finally conceived our son Jasper, we thought those hopes were going to be a reality.

When our son died in 2013, this feeling of isolation returned and grew unbearably. People whispered about us and looked away when we walked by. They did not have the magic words for us. They had never experienced the loss of a child so they didn’t know that we were not looking for words from them anyway; just their open ears and presence. Some of them tried some magic words, but often they illustrated some horrible notions. One of these terrible concepts is that having another baby could replace our lost son and fix us. A lost child cannot be replaced.

Stigmas don’t just lie in those unaffected by pregnancy and infant loss. There is this belief that every loss parent gets another chance, a ‘rainbow after the storm’ they say, but that isn’t always the case, which can leave loss parents feeling even more isolated amongst those that should ‘get it’.

I’m not going to lie, the last 4 years and some months have been the hardest. The fact that I am among people right now that I can be honest with is helpful. I don’t have to pretend to be “ok”.  All of us here are not afraid to talk about our children and our grief which gives me hope that the treatment wielded by general culture towards this type of loss will change.

I am hopeful that as we continue to advocate and share the love that we have for the babies that we are missing, that this cultural shift will be apparent. We will not have to hide our anger, sadness, or joy. Yes, joy, like all emotions are a crime for the bereaving parent as well. As we are more able to be open about our grief with others, my hope is that the awareness will rise – awareness of infertility, awareness of loss, awareness of the fact that these babies were alive – and that with this awareness, more people will care. As more people care, more funding to allow for research and bereavement support will be available.

We have made our son’s legacy all about education, research and support. He paved the way for advocacy and awareness. Our son did not die in vain.  He has provided us this platform which does give hope that the bereaved parents after us will get answers, have the support they need and know that they are not alone.”

You are not alone.

Amber Smiley
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Amber met Chris when she was in high school and married him as soon as she could at the age of 18. She was certain that she wanted children right away but that was not how things were going to work out. They lived in Las Vegas for over 10 years before they finally became pregnant via intervention and plenty of patience. Jasper’s heart stopped at 40 weeks and that was the beginning of what has become a sometimes brutal and sometimes hopeful, new way of life. They knew they wanted more children and have since suffered many early miscarriages during the process of multiple IVF and IUI cycles which have left them with broken hearts. Feeling defeated and alone, the bereaved parents moved to Connecticut in search of a much needed new start. Amber was inspired to work towards becoming a therapist during her process of trying to find support after her loss. She is currently a freelance graphic designer, artist and marriage and family therapy graduate student. She takes comfort in the idea that their son was a driving force for her to help other people through a time that she and her husband felt so alone.

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