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  • abbeyahernAnencephaly awareness... I'm still trying to figure out what that means for me. It's not a disease. We don't need to rally and raise money for a cure. It's a birth defect. It just happens. Like other neural tube defects, it's multifactorial. The only discernible link to a cause is a folic acid deficiency. To protect any future children I take 100 times the "normal" dose of folic acid every day, just in case.

    My personal "awareness" campaign this month has not really been about anencephaly. It has been about loss. It has been about love. I want to make my world aware that when someone suffers a loss, whether it be a child, a spouse, a sibling, a parent, a friend, long after the world moves on, we are still here. Still hurting.
    This photo was taken by my husband, moments after Annie died. I SAW her leave, so I was very aware that her little body was just a vessel. I clung desperately to that vessel, and I find myself looking at this picture and wishing I could hold her one more time. This photo hurts just as much today, almost 3 years later, as it did the day it was taken.

    I have recently realized that this journey will likely never end. Her absence is everywhere. The pain ebbs and flows, but it is always present. If someone you know has experienced loss, here is some advice: -call them, even if you are worried you'll bother them
    -if you aren't a phone person (who is, these days) text them and let them know you are thinking of them
    -show up with food (or, even better, booze)
    -ask them how they are doing -don't ever hesitate to say their loved ones name, or ask questions

    So many of you have done some or all of the above for us, and that has helped to heal our hearts tremendously. There have been many genuine moments and heartwarming conversations that never would have happened if people worried about "spoiling the mood by bringing it up." Even this #anencephalyawareness outlet has allowed me to breathe new life into our daughter. She was meant to be shared from the moment she was created, and I am beyond proud of the work she has done. Thanks for letting me over share. ❤️ #pistolannieahern #anencephalyawareness

  • c.louwhoMy heart is broken for you. Thank you for sharing yours and Annie's story! She's precious, still and always. ❤️️
  • boonyisitaOh god Abby, heartbreaking! You are so strong and I know that is the hardest thing as a human to deal with, I'm crying just reading this because my heart breaks with you for her.
  • ___arianabowdenI just saw this on an NZ news website. I am literally sitting here balling my eyes out. My heart breaks for you. What an amazing amount of courage you have for wanting to donate Annie's organs. Beautiful thought. May God bless you and your family xxx
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