Dear Families of the Newly Diagnosed,
You are in it, aren’t you? I know that feeling…thinking life will never be the same, wondering if you will ever feel normal or happy again. You wish that you could push rewind, or at least pause, and take a breath. You feel physically sick and more frightened than you ever have. I wish I could jump off of this page and look you right in the eyes when I say this: it won’t always feel this way. You will get through this. You will smile again and laugh again and find joy in places and people you never would have expected. Your heart may feel hollowed out by this grief, but love will pour into those deepened channels, and its depth will astonish you.
I wish there was a way I could have glimpsed into the future in those early days when all I could feel was the intensity of pain and fear and jealousy and uncertainty. I wish I could have seen Eliza’s smiling face, tilted up to watch a hummingbird drinking nectar from the feeder, or watched as she skied and sang her way down a mountain. But, of course, I couldn’t.
I felt like our world was divided in two: the days before the diagnosis and the days after. Everything shifted when that happened. Everything. But the shift brought blessings I may have otherwise missed. I have never had more meaningful relationships. I have never allowed myself to become so vulnerable as I have since she was born. If not for this journey, I probably never would have paid much attention to the supreme network of helpers or to the miraculous ways babies learn to communicate or move. The months of intense therapy it took for Eliza to do something as seemingly simple as sitting up gave me a front-row view of the wonder of development in slow motion. And when everything is slowed down, you notice things you wouldn’t have otherwise. Hard things. And breathtakingly beautiful things.
I write this in hopes that telling my own truth may help you feel less alone in yours. I want nothing more than to sit with you in your NICU room or your baby’s nursery and to just listen. To hold up a little piece of that burden and to shine a light in the dark places where fear grows. I would say fear grows best in the dark, so in whatever ways you can, put it out in the light. Talk about it. Write about it. Pray about it.
You are in a sacred space, and I am praying for your journey through it…rooting you on from afar. You can do hard things. And you don’t need to do them alone.