From Instagram post on 9/11/18:

“We have some incredibly difficult news to share and we finally feel like letting this community in on it. This message will probably sound stoic..it’s a mode I can switch into when sharing facts. Once I start talking about what this actually means, I’m a mess. Without sharing all the details of the story, we discovered that Asa has a very rare disease called Pulmonary Vein Stenosis. It is in a severe stage and is unrelated to his syndrome. There is no cure and no treatment at this point. We’ve been home on hospice since July, focusing on comfort, enjoying and loving on Asa for as long as his little body will let us. He’s currently comfortable, stable, and not in any pain. We’re heart broken and learning how to navigate this news.

How are we doing? I will speak for myself even though Ryan is in a similar place. I am equal parts in shock, scared, grieving, at peace, angry and numb. Somehow all those emotions can co-exist, but many of them have for the entirety of Asa’s life. I’m trying to let the emotions pass through me as they come, almost like a contraction in labor, knowing another wave of pain will come. Welcoming the calm between, catching my breath. Realizing there is no relief of an end though, just an endless ocean sending endless, crashing waves. The intensity of the crashes will lessen, but the shore is always breaking. The numbness is welcomed because I know it’s only temporary and it’s allowing us to enjoy him and be present. It’s giving us our “normal”. I don’t want to waste the rest of his life mourning a death that hasn’t happened yet, so bring on the numbness.

Sharing Asa in this season with you almost feels like it takes away from the sacredness of this time but I also know that many of you have fallen in love with Asa and I’d also like to be able to share him with you while I still can so I will be falling somewhere in the middle. I’ve enjoyed sharing him on here since coming home from the hospital without many of you knowing his new condition because you’re still celebrating his life without heartache, so I ask that you please continue to see him full of life! I’ve been writing a lot, so expect lots of real, raw emotion over here.”