Today is Trisomy 18 Awareness Day. I am aware. And it sucks. And here are a few other things I’m aware of:
I am aware there’s not a damn thing you can do about it. It’s not a preventable condition. No vitamin will help. No vaccine will prevent it. No amount of fruit or vegetables or exercise will have any impact on the outcome.
I am aware that some care providers will recommend to moms and dads that they should terminate their pregnancies. I am aware that some people will make this choice. But I am aware this is not the only option.
I am aware that people make different choices for the care of their child after their birth. Some pursue surgeries. Some babies stay in the NICU. It forces parents to make difficult decisions that they have to live with and that they will question for the rest of their lives.
I am aware that it is not my place to judge them for their choices. And it isn’t yours either. I am aware that every child is different. Every family is different. And every decision is made with love.
I am aware that although in my heart I know we made the right decisions for Zoey, my mind will still cast doubt. And I am aware that wondering “why” and “if only” is not the path to stay on for long.
I am aware I will never really understand in this lifetime. But that when I see her again, I will not need to understand.
I am aware that T18 can cause many birth “defects”.
But I am aware that Zoey had the sweetest little in-turned feet. And they were the softest things I’ve touched. And that now I think other babies feet look strange– hers were all I knew.
I’m aware that T18 can cause cleft lips and pallets. And that people can be insensitive– that they’ll hold your child weeks after her birth and say “she’s pretty even with the cleft lip”. And I am aware that my daughter is beautiful. PERIOD.
I am aware that T18 causes issues that can take their lives. Like heart defects. And I’m aware that sometimes a mom will hold her baby girl as that heart beats for the last time.
I’m aware that I held my daughter, bathed her, changed her diaper, fed her, read to her, danced with her. I watched her raise her eyebrows when curious and scrunch her forehead when mad. I would see her bright blue eyes light up with wonder.
I am aware I would do it all again just for those moments.
I am aware that she made me a mother. And that I will always be her mother. And that I will always search for ways to mother her.
I am aware of never ending, all consuming love.
I am aware of T18. I am aware it took my daughter’s life. But I am also aware that it gave me the chance to cherish every moment. To experience love in it’s purest form.