03/27/2026
It’s been a little bit since I’ve updated here, but not much has changed. We are still working through the appeal process and insurance continues to deny coverage for his medication. We have exhausted all available appeals at this point and the decision is now being sent for external review. When I last spoke to the nurse, she said if the external review doesn’t do it, then our options are to keep paying out of pocket, take him off of it, or get an attorney. None of which we want to do. I’m hoping that God has something up his sleeve because I’m getting tired and I feel guilty for being tired already, just four months in, knowing what I know about this process and others’ experiences with their children.
I think at the root of it, I’m trying to figure out how to juggle all of this and still live a life without an asterisk. What I mean is, if you’ve ever heard someone ask me about any of our vacations, you’ve probably heard me say, “oh it was fun, with an asterisk.” Basically, it was fun*… as fun as it could be traveling with a hungry, hot, tired toddler who wanted a blue beach towel and they only had a green one at all 5 stores we stopped at. You get the gist.
I don’t want our life to have an asterisk. I don’t want to let this whole thing hang over us all the time, waiting to steal our joy. That’s just what we’re navigating through now… how to stay focused on one day at a time, stay hopeful, stay faithful, and enjoy life as we move forward, without letting this diagnosis consume us when we are met with the reality of it. It’s really easy to forget he even has it sometimes. We fall into a routine of poppin’ pills, goin’ to school, baseball, playin’ outside, and making adjustments where we need to for his vision loss; it’s nice, but when we do actually have to stop and think about the long-term or the unknowns, it can be a really hard thing to wrap our minds around again.
I say all this to say, please keep us in your prayers. Pray specifically for the external review to come through for us or if not, that we would have patience and peace while something better God has planned has time to unfold. Pray that we won’t let the weight of carrying all of this interfere with how well we are able to love him and show up for him as parents. Grieving with hope, while protecting his bubble of obliviousness, is hard work.
I told God when all this started that if He was going to send us down this path, I needed to see Him in it to make it through. Of course, He’s moved in some major ways already, but I really appreciate the little winks too, so I’ll leave you with my latest wink. I was watching the finale of the new season of Virgin River on Netflix. There’s a scene in that final episode where Jack and Mel have just learned something about the baby they’re trying to adopt. Jack asks Mel, “how are we going to do this?” And Mel says, “we just keep going. This is our baby, and we’re going to love him whether he lives 100 seconds or 100 years… he needs us, because we are the people that do the hard things.” I actually got a little emotional because I saw so much of me and Jacob in that scene. But the wink? The name of the episode was David and Goliath.
