I am the face of loss. I am the face of hope.

“Have you ever wondered which hurts the most: saying something and wishing you had not, or saying nothing, and wishing you had?” — Unknown

I am face #1357 of 2000 women who participated in the “I am the face” campaign started recently. I had hoped to post this on Friday, October 15th which is national infant loss awareness day. Infant loss apparently seems to be a taboo topic to discuss publicly, or so that’s what I’ve learned over the years after having 3 miscarriages and now still in the midst of deciding whether I should give up on my baby diagnosed with spina bifida this month. Last October I shared my emotional rollercoaster on my blog after going through probably one of the most trying miscarriage experiences ever, not just for me, but of all miscarriages. I was told my experiences and things that happened were things unheard of my my doctors who most had 20-35+ years of experience and are very well respected in their medical profession.

I am the one of the very few mothers among many thousands who has spoken out and shared so much, not just to create awareness but truthfully more as a way for me to cope through the struggles I faced. It was a way for me to reach out to inform our friends, family and all the amazing people out there that now care for me and my family. It made sharing the non-stop things that happened easier so we didn’t have to repeat our story over and over to our loved ones. But I am the rare one to be so courageous to put my emotional experiences out in the public and share so much. Most women remain silent. Many never tell a soul beyond their significant other. Many may tell family or friends but beg for it not to be brought up again. They don’t want it to define them. And I understand that, but as you can see, for me it has totally shaped me into the person I am today. There’s not a day that passes that I don’t think about all that has happened and how much it has all changed me. And as much as my losses have totally sucked, I believe they have changed me for the better. Losing something you want so much only helps you realize just how much you really truly want it that much more.

So I didnt hesitate to step up to participate in the I am the face campaign…because I am the face of loss and of hope. The 2,000 faces they sought out in this campaign represent ONLY 2,000 of the faces of women who loss a child EACH and every day. Yes, every day 2,000 babies die through miscarriage, still birth, termination or due to other causes. No family should have to go through this once, let alone three times. And then to now have such a challenging diagnosis as spina bifida to make me wonder if termination is a wiser option than our baby and family living a more challenging life just really tears at my heart. If you’ve never lost you are one of the lucky ones…there are many, like our family, who endure these struggles many times.

I’ve openly shared my experiences further on Faces of Loss, which includes sharing a bit about those first two miscarriages and what the last 11 years have been like as our family has been challenged time and time again. I can sense many, especially those that don’t know me, are quick to judge me since airing my emotions the last 3 weeks, but you don’t know me, or the struggles me and my family have faced and you have no right to judge a person without walking in their shoes. After seeing the response to my blog posts this past week part of me wonders if I should have remained silent and just kept my thoughts to myself, but I still would have done nothing differently. I have come to recognize that I am the voice for all those scared to speak up about losses such as my own or about wishing to consider decisions as our family is now faced with. I may have offended many, but I have already heard privately from many that my voice is appreciated because I have said the things many are scared to say out loud. I’ve had many tell me “thank you” because I helped them realize they’re not alone and I’ve said what they don’t have the courage to say. I am not ashamed.

I also wanted to share with you all one of the most touching stories I’ve read on infant loss. The story is from a father’s perspective. Many times the men never say a word. They stand behind the women who grieve such a loss and remain their strength. They rarely express their sadness or own emotional struggles. Though this family’s experiences are a little similar, they are not the same as mine, but they are equally as touching. I know some may read that article, some may be more touched by some of the excerpts with the biggest impact I found relate to our own experiences and perhaps, just maybe it’ll help you relate just a little to our past…and now our future.

In the morning, I retrieved the two-week-old celebratory e-mail, cut and pasted the names of the recipients, and informed everyone that the pregnancy had ended and we needed some private time. And then we witnessed different forms of the art of consolation.

The third wave of consolation came from friends who wanted to touch base, see if we needed anything. These offers were well intentioned and tiring. They required a response when neither of us had much strength. But sometimes we’d read a message, something like “We don’t know what to say. We love you. We’re here.” And that was perfect.

We eventually started to respond to e-mails and calls and venture outside where we encountered the fourth wave, the most infuriating. It was the unsolicited mention of “God’s plan.”

I don’t know if this evoked rage or was the random place where my rage happened to fall, but when I’d hear someone say, “God’s plan,” I would immediately think, Asshole.

My wife wasn’t bothered by it. She’d explain that the concept of God’s plan — or its less Catholic/Christian version, “Everything happens for a reason” — brings people comfort, which is what they are trying to provide. To me, it suggests there’s an explanation for your pain, but you don’t get to know it. It’s brutal.

To all those who have offered our continued support and care — thank you. To all those who have lost and are out there listening…may this remind you that you are not alone, regardless of whether or not  you wish to remain silent about your loss.

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October 17, 2010 - 11:51 am

Jeff Janelle - Amanda,

I hope you know just how much of an inspiration you are to people, especially me. You face whatever life has thrown at you with dignity, grace and strength. You have to me so much, both in and out of the classroom. You make me not only want to be a better designer, but a better human being. Whenever I’m faced with an obstacle (though, these could never compare to what you are facing), I often think of you and your family, the struggles you have and are enduring, and how you keep pushing on, keep moving forward, and I am inspired to just keep going.

I know the days ahead are going to be challenging and the decisions you face are agonizing. I hope you know that you are surrounded by people who care about you and are sending love and prayers your way.


October 18, 2010 - 1:06 am

Adrienne - I don’t know if I have posted before. I have been married 10 hrs. We did fertility for 3 years, had an ectopic emergency surgery, tried to adopt for 2 years and then got pregnant. We were thrilled and now have a 3 yr old. Then we did IVF. We got pregnant with twins. One miscarried and the other was later diagnosed with SB. I feel your pain. I have great compassion for you. I ran a half marathon today for my son with SB which I never would have done if it weren’t for him. I am glad you are reaching out. Please call if you ever need anyone to chat without judgement 512-585-0724.

October 19, 2010 - 1:18 pm

Jodi - Oh, I hurt for you, Amanda. My heart is pounding and my hands are shaking… I can barely type. We never lost a baby. But I do understand the agony of trying and trying for a baby. Then upon finally getting pregnant, we got the SB diagnosis. DEVASTATION. I wanted to crawl into a hole and not come out, ever. But then she was born, and nothing else mattered but to hold and love that sweet baby girl. And she is De-light-ful. Anyone who knows her can not imagine a world without her. I painfully read your words, “after having 3 miscarriages and now still in the midst of deciding whether I should give up on my baby” and “wonder if termination is a wiser option than our baby and family living a more challenging life”…. You’re right, I do not know you. I do not know your pain. I do understand it to some degree. And it is HARD. HIDEOUS. But as a Mommy on the other side of it, living that more challenging life and watching my sweet baby grow into a BEAUTIFUL girl with a determined spirit FULL of life and laughter, I beg you to embrace the challenge. I would bet that you are WAY more prepared to face it head on than I was because of your past history of loss. And what a blessing that strength could be! I again ask that you please visit my website I posted and see our girl. She’s a fighter, a hard worker, and she is PERFECT. Spina Bifida is the least interesting thing about her. And I would love to be in contact via email or otherwise. Blessings….

October 21, 2010 - 1:12 pm

ModBev - I found your blog following the usual breadcrumb trail from another blog. I do not know if you are on Twitter, or not, but wanted to let you know we are hosting a #pregnancychat on Twitter on pregnancy and newborn loss. The chat will be on October 27th at 3pm. Please consider joining us. Use the hashtag #pregnancychat.

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