In the summer of 2022, we found out to our delight that we were expecting another precious baby. We were thrilled to add another child to our family and watch B become a big brother. We did our best to quiet the first trimester nerves, and waited not-so-patiently for our first ultrasound.
At 12 weeks and 6 days, we were nearly out of the first trimester and finally had our ultrasound. When the image of our girl came up, we could immediately tell that something didn’t look quite right. Our suspicions were affirmed moments later when the ultrasound tech asked us if we were planning on having prenatal genetic testing done. We were escorted to a small office where a doctor informed us that our child had multiple abnormalities. Our hearts shattered as we received this devastating news.
We spent the next few weeks meeting with genetic counselors, waiting on genetic testing, and Googling numerous medical terms and conditions that were now part of our vocabulary. The prenatal testing eventually confirmed that our daughter likely had Turner Syndrome, and ultrasound indicated that it was a severe case. Every doctor we saw, except one, encouraged us to abort. Avery was given less than a 1% chance of survival. She was expected to pass away in utero within one month, and we started having weekly heartbeat checks.
To everyone’s amazement, Avery lived through the entire month. And then another one. She was a fighter, and we were so proud of her at each appointment. She defied the odds so dramatically that we started to wonder if she would be the miracle 1%. We met with a pediatric cardiologist and simultaneously planned for both her life and for her death.
Near the end of week 24, God, in His mercy, welcomed our girl home. We found out that our little fighter had succumbed to her medical complications in utero, and she no longer had to fight. We walked the brutal road of delivering our daughter, holding her, singing to her, knowing her outside the womb for a very short time, and then going home without her.
It struck us that she was born in week 24, which is normally the week of viability. How fitting that God chose that week to welcome Avery into her heavenly home, where she is healed, whole, made new, and fully alive. We miss her every day and we would change the ending of the story if it was up to us, but we’re also grateful that she never suffered on this side of eternity.
Being Avery’s parents for the short time that God entrusted her to us was a privilege, and we look forward with great anticipation to the day we see her again.
PAYING IT FORWARD
Our story would not be complete without mention of the role that Abel Speaks played in our journey with Avery.
When we found out her diagnosis, we were crushed. We were overwhelmed by grief and swimming in questions. As much as we’d love to say we handled those initial days and weeks well, the honest truth is that we struggled.
It’s hard to bear the weight of waking up every day wondering if your child is going to die that day. It’s especially hard when you don’t know anyone else who’s walked a similar road. Connecting with Abel Speaks and other families who also received a life-limiting diagnosis for their child helped us more than we can say. We finally felt seen, and we didn’t feel so alone.
Initially, we did not want to reach out to Abel Speaks. With doctors anticipating Avery’s death so immediately, we didn’t feel like we qualified to be an AS family. However, when we realized that we needed to start planning Avery’s funeral, we broke. We had no idea how to plan a funeral for our child. Out of desparation and heartbreak, we reached out to Abel Speaks for guidance. Within days, we were on a phone call with Kelly Crawford and had funeral-planning resources in our inboxes. This was the tangible and practical help we needed in that moment, and we were so grateful.
Abel Speaks not only lightened the logistical load we were carrying but from that moment forward — they started to restore the joy and hope that we had lost in the wake of Avery’s diagnosis. This shift in perspective that we experienced was the greatest gift we could’ve received. Abel Speaks helped us to treasure her life, instead of dreading her death.
This is the work that Abel Speaks does. They breathe hope back into families who are hurting.
In honor of Avery’s first birthday, we hope to raise enough money for Abel Speaks to support three other families like ours. We know first-hand that these resources will not be wasted. Thank you for your consideration in joining us in this effort and for remembering our sweet girl.
By faith, Avery still speaks!
-Ben & Kelly Carrion