I’ve recently been supporting a family who had a prenatal diagnosis with ARPKD. The dad contacted me through the PKD Foundation looking for support and information. We talked several months ago and as their pregnancy progressed, I got to know them very well. They had their son Nolen nearly two weeks ago and he died after 6 days. It was very painful to watch them lose their son and while I know they don’t mind sharing Nolen’s story publicly I’m not sure how personal I want to get into his story.
They are okay with me sharing how knowing Nolen has affected me because they want the world to know him. He was beautiful and they were loving, protective parents while he was here and they miss him terribly. Their devotion to him has impacted me greatly and I’m finding it difficult to return to my normal. Maybe I won’t return to my normal and maybe that is the point.
via Taken : Kidneys and Eyes.
Julia (our fearless co-founder) doesn’t know I’m sharing her personal blog here (well, she does now because she’s probably reading this in her feed reader) but I had to because this is one of her amazing entries. I just wanted y’all to know the kind of woman who is behind this site so you can admire her as much as I do.
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