Among the many things with which I currently struggle, the unknowns are what nag at me the most. I feel out of control about what’s coming – for me during labor, for James and his life, for the medical interventions he may need.
But really, are we in control of anything? We have the illusion of control, we want to believe that if we are vigilant enough, stalwart enough, we can prevent bad things from happening. But as the parents of the boy that fell into the gorilla enclosure and the parents of the boy snatched by the alligator can attest, no matter what kind of parent you are, a second’s inattention can have tragic consequences. There is no controlling what happens – not for James, not for Evaline or Hazel, not for me, not for any of life.
So I have been trying very hard to accept my inability to control this. I have been trying to take pleasure in the everyday – find pleasure in my pregnancy, in feeling James kick, in being with my kids, in existing in these moments of time during which I have the knowledge of James’ illness but none of the associated true strains that are coming.
I went out to dinner with a good friend last night, and we were out for 3 hours, eating, enjoying the French Broad Chocolate Lounge, and just being. It was a welcome relief from the Facebook stream of posts about T18 babies, the endless medical literature articles, the constant internal debates about c-section versus induction. I allowed myself to set aside the grief and pain for a little while and to just exist in the moment, with my friend. Of course, we talked about James some, but we also talked about work and other friends and our kids, and a lot of the in between stuff.
Today, it was back to reality. We met with our palliative care team again just to touch base and discuss how everything was going. They listened to our concerns about what’s coming and the decisions we face, as well as the things that we want to possibly happen when James makes his entrance. It was nice to talk through things. Dr Furigay is very optimistic about James’ delivery and is hopeful that he won’t need heavy duty intervention initially. His hope is infectious. Obviously, there are no guarantees with anything, but he takes it as a good sign that the ultrasound has shown relatively few concerning findings, that James is passing all of his biweekly monitoring with flying colors, and that he is an active baby. I’m borrowing some of his hope for now, as I find it gets me through the days.
It’s still day by day, but I feel like I am starting to slowly gain my bearings. As someone told me, it’s about re-framing your expectations. The expectations that I had of a little baby boy, healthy and robust like his sisters, coming home with us after a couple of days at the hospital, growing alongside his sisters, nursing, cosleeping, wearing the hand-me-downs of his cousins, rough and tumble play – those things are gone, never to return. In their place is something scarier and much more indistinct. But there will be still be joy and love and happiness, and I am choosing to focus on that.