Learning to Cope
The only thing in this world that can keep her alive is my body. No machines. No medicines. No surgeries. No NICU. Just the safety of my body. Letting that realization sink in is double edged. On one end it’s empowering - how amazing is it that I am her only source of vitality? On the other end it’s terrifying because I know that the days are numbered and she can’t stay there forever.
Which means she can’t stay with us forever.
We share our thoughts and feelings along our path not to make anyone feel sad. We share publicly because we know we have people on 6/7 continents who love us and who are sharing this journey with us. We also share because trust me when I say you’ll never believe it can be you. The reality is that 1 in 4 pregnancies end in loss. 1 in 100 pregnancies end in stillbirth. Limb body wall complex? 0.32 per 100,000 births. Sounds rare, but you’re reading this because you know me. It’s happening to me.
That small fraction also means that there are not many other people like me out there. We are sharing for the families of the future who will walk our same path. We’ve never felt loneliness quite so strong than when we scoured the internet for stories like ours, and came up short. There’s nothing we can do about our journey so far, but we can do our best to pad the walls before another couple walks into this desolate room.
Sitting in Ultrasound Room 5 in the hospital on February 12th will be something we will never forget. Not just because of the content of the news we received but because of the delivery of the news. The lack of compassion will haunt me forever. The feel of the amniocentesis needle penetrating my un-numbed skin will haunt me forever. “Whenever you feel like you can sit up, you’re free to leave.” Will haunt me forever. Leaving with a two page list of local and out of state abortion clinics and nothing else will haunt me forever. Finding out that many medical options were stripped from me without my knowledge will haunt me forever. Knowing that we will do everything in our power to change that for future parents? That will keep me going forever.
“The thing that breaks your heart is the very thing you were born to heal. Every world-changer’s work begins with a broken heart.”
You may note a lack of religion in our posts. We are where we are. To say our faith has wavered is an understatement. “Thy will be done” turns crushing when it’s your child they’re talking about. When it’s about your life plan being ripped to shreds before your eyes. We are not asking for prayers for miracles or hope. Mentally, those do more harm than good for us. We know there is no hope for life outside the womb and no possibility of a miracle. We know that. We have accepted that. We’ve accepted the science behind it all. We have seen the proof with our own eyes - many times. Instead, we ask for prayers for strength, time, love and peace.
Many people don’t know what to say. We know that. We would be you if the situation were reversed. If you are interested in learning more about loving on parents like us, or grieving parents in general I am attaching a few links below. Again, you never know when this could be you, your child, your best friend, anyone you love.
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I hope that these songs shine a little bit of light on your day today. Know that you’re not alone in these hard times, and it’s okay to “get it out” in any way that you can. Music is such a great escape, but it’s also one of the few forms of art that can put words to feelings that are hard to describe.