Taken : Kidneys and Eyes
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.
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.
Note: To support the site we make money on some products, product categories and services that we talk about on this website through affiliate relationships with the merchants in question. We get a small commission on sales of those products.That in no way affects our opinions of those products and services.
Share this:
About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.