This week was an important one in our journey with Samuel. On Tuesday we had a visit from CompassionNet, a charity that works with children on Excellus health insurance plans who have a life-limiting diagnosis. On Friday we had two other appointments, which I wrote about separately.
CompassionNet sent not one or two people to talk with us, but four women who spent 90 minutes in our living room talking through possible scenarios for Samuel’s life and ways they can support us through all of them. They provide support to families in these situations, including talking with our medical team on our behalf, helping to coordinate funeral arrangements, providing palliative and comfort care, and basically being awesome supports to us. They have doctors on staff who can visit in our home to explain medical procedures we need to decide about, and they have child life specialists who will work with Daniel to help him understand what’s happening with his baby brother.
All of their services are totally free, paid for not by insurance claims, but as a charity fully paid for by Excellus. They were impressively compassionate and listened to where we were at with processing things.
I was encouraged at the end of our meeting when one of their team said, “I’m really impressed how much you’ve both already processed through things. These are difficult topics to discuss, and I’m impressed with how far along in the process you are.”
It was special for me to hear her say that because I don’t feel especially awesome in where I’m at with these things. It’s incredibly hard, and quite consuming at times. I don’t know if or how we should intervene in Samuel’s conditions, and frankly don’t even know how to make those decisions.
But Joanna and I do talk regularly with each other. We’re surrounded by a lot of people who are really supportive and loving toward us, and we pray regularly for God to touch Samuel and us. We are very aware of the reality of Samuel’s situation, and we talk often about how we’re doing as we each sort through these difficult decisions.
I know that all of these issues and decisions matter a great deal. I’m very thankful that Joanna and I get to work through it all together, and that we’re not on our own. Sometimes I think about people who don’t have a prenatal diagnosis and find out at birth, or lose a pregnancy suddenly, and I’m thankful we have the gift of time to think and prepare and grieve along the way. This is an incredibly difficult season of life, but I’m thankful for the time we have before we need to make many decisions.
Part 2 of this week’s story is posted in the Ultrasound and NICU Tour.