A nurse gave us a copy of "Welcome to Holland" not too long after we had gotten the diagnosis. It was a beautiful explanation as to why life is going to be different than we expected, the same destination, just a different path. It wasn't until a few weeks later that we realised the author's name is Emily Pearl Kingsley, which is oddly coincidental as my name is Kingsley. Weird.
https://www.emilyperlkingsley.com/welcome-to-holland
This is an interesting time to read this, thanks for sharing. My wife and I just brought our 6 month old daughter home from the ICU after spending all but 2 weeks of her life there.
Our lil baby has Kabuki syndrome, it’s extremely rare, but has similar attributes to Downs. Kabuki can and has affected multiple organ systems with our girl, she has very complex heart disease, a pelvic kidney, hypotonia, hip dysplasia, malrotation, right isomerism, asplenia, immunodeficiency, endocrine issues, severe hearing loss etc, etc.
It was a hard pill to swallow that I am a dad to a special needs child now. Kabuki kids have varying levels of mental and physical disability, but we were told she will likely be generally happy, which is all mom and I really care about. We’re at peace with everything now, and are just extra loving on the small things (like her smiling!)
I do plan on blogging about being a dad to a medical 1%-er, tips/tricks, especially as I am originally from England and now live in the US, if anyone is interested.
https://kingsley.sh/posts/2021/staggering-cost-of-surviving-...