That Day...
Time had gone cold.
Today we are officially one year out from learning Isla’s diagnosis. 365 days ago we sat in ultrasound room # 5 and heard all the things that were wrong with our baby girl. All of the things that made her #incompatablewithlife . I stared at the ceiling tiles for the remainder of the appointment - more ultrasound images and an amniocentesis - when they sat me up I stared at the wall. We weren’t given any answers besides “she’s not going to make it”.
They say that as you die, your life flashes before your eyes. I understand that more now, but in reverse. As I sat there with doctors working around me I watched the dreams we had for Isla’s life flash before my eyes. I watched the dreams we had for our family flash before my eyes.
Maybe one day I’ll be ready to write about how we were treated by doctors that day. Maybe not. I am most thankful that my mom was there to advocate for us and guide us in our darkest moment. The other important things I try to remember are the love we were surrounded by outside of the hospital. Our parents all came to be with us immediately and our friends held us up with love and support.
I looked back at texts I sent out to update family and friends. One line:
“We’re going to lose her”.
I choke up reading that still to this day because on that day that is all we knew. We were entering a state of limbo with questions like: would she be with us tomorrow? Will my water break tonight? Will she have a heartbeat at this appointment?
It is a path that I would wish upon no other person, which is what inspired us to start Gifts of Time. The lack of professional medical education on perinatal hospice care is astounding. The lack of support and guidance for families like ours is beyond disturbing. The follow up mental health and family support is completely nonexistent unless you intentionally seek it out, independently.
We hope to be a beacon of hope, love, and positivity for families who walk this path after us. For families like ours, tangible items are all you have left of your child. While we cannot change the outcome for these families, we will provide them with what they need to make those physical memories last forever.
On a side note…
** If you need a good laugh after this, check out what happened to our car on the way home from that appointment. No I’m not kidding. That’s a giant rock stuck in our grill.
Yes we are beyond grateful it didn’t come through the windshield. And let me tell ya, had it happened any other day I would have melted down! That day? I just shrugged, we pulled the rock out, and moved on. A good lesson in perspective. How could that day have gotten any worse? The universe sure did try.
So keep your head up, and keeping pushing forward. It always gets worse before it gets better.
- Elizabeth
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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.