When we first received Zoey’s diagnosis, I turned to the internet. As you can imagine, it provided mixed results. From the first time we heard mention of Trisomy 18 and read the words “incompatible with life”, internet searches provided little hope. Support organizations are out there too, but I didn’t find them helpful. There is a divide even within the Trisomy community over how much intervention to pursue. While I believe you need to do what you honestly feel is best for your child, it seems that some people don’t support other’s choices. Message boards are not for me either. If you’ve ever read the comment sections on web stories, you can imagine why.
My best resource: other moms and families in similar situations to ours. The ones that open up their hearts and their lives to you. Women like Janet who started Allison’s Angel Gowns in honor of her daughter. She’s a great mom to all her daughters: the ones here and her little angel. She inspired the idea to make Zoey a dress out of my wedding gown and provided the opportunity to take her pictures in my other dress. These are some of my favorite photos and favorite memories. She’s making a difference in the lives of other bereaved moms. Providing them not only a beautiful gown for their precious babies, but also comfort and friendship. She’s honoring the life of her daughter every day by sharing her story and sharing the gowns.
I also want to tell you about another family who lost their daughter to Trisomy 18. They gave their daughter a beautiful life for the 31 days she spent with them. They continue to honor her memory and cherish her life. I wish I’d known them then, been able to hold their sweet baby, but we met around Christmas last year just a few months after Hattie passed away. Andrea has become my safe place– the one I can say anything to without judgment. We belong to the crappiest club in the world, but if you’re going to suffer you might as well suffer with someone who can make you laugh through it. She’s always there to share the pain. And share the joy. And most often, to share the prayer that our girls are together and watching over us. I think she’s really “stupid”, but I love her (along with Kevin, Miles, Hattie and Matilda!).
It takes a strong family to open up your grief journey to another family facing similar circumstances. It’s scary. You take a risk not knowing if the other family shares your beliefs about how to care for your child. Wounds are re-opened. A path already survived is traveled again. But these families give others hope. They confirmed that our decision to carry Zoey was the right one. They showed us that we’d be able to laugh again– even if it hurt. They showed us that life will go on, forever changed but worth living.