In recent weeks, Luke and I have been having more and more conversations about Olivia’s fate. What will her life look like? How long will she be with us? Will she come home?
The possibility that she may pass away before ever leaving the NICU – no matter how unbearably sad that is for us to imagine – is real. And no matter how many times I’ve been encouraged not to get ahead of myself… not to think about outcomes yet… to stay in the here and now… I can’t. I don’t.
Ultimately, I go there. Usually multiple times a day.
I think about things like how she may never feel the fresh air, or feel the sun. I think about how she might never enter our home, never spend a night at home with Mom and Dad. She may never wear a Halloween costume, or see Santa. I think about all the friends and family members she may never meet. The places she won’t be able to visit with us.
Some things I think about are silly, like Halloween costumes and Santa. Some are sad, like meeting family members, and visiting places that are special to us.
Others are just downright innocent: the warmth of the sun, the feeling of sand beneath your toes at the beach, the way the air starts to smell differently in the fall.
And while not every innocent thing can be bottled up and brought to Olivia, some certainly can. So I’ve decided to do just that. Even if it means sneaking things in and breaking NICU rules. Dr. V – if you’re reading this, no fair telling on us!