My Dream for Noah


The most important thing for Noah is to have an ongoing relationship with a doctor who knows him.

One day I will not be around and he will need to live with you, please plan on Noah living with you or next door to you for the rest of his life. Hopefully Noah will get into computer coding (he signed up for the class next year), so he can make enough money to buy something near you, but he will need family near by to help him.

(And then computer coding will give him a way to make money from home, but it’s not always easy to do any kind of work when you’re really sick.)

To plan for this day, once you’re settled in a year or two, you can buy another unit near you when it is put up for sale, and then rent it to cover the mortgage–it’ll be an investment, plus it will build a good safety net for Noah’s future.

(Since there’s no rush, you can causally keep an eye on what’s being put up for sale–)

I would *never* have made it this far without Joe’s financial support and Peter’s physical support.

You can not count on Noah getting as lucky as I did in life–most chronically ill people are dependent on family first–you need to think about building that support for Noah.

Noah really has an extraordinary mind…just sitting and talking with him about things, I’m amazed by what comes out of his mouth now. His thoughts on life, on people, on outer space (and lately he’s been yapping about getting to the bottom of what exactly gravity is 🙄), it’s fascinating to sit and listen to Noah talk.

I’m often dumbfounded over how brilliant he is. We both knew he was going to be brilliant, I just didn’t think he was gonna be this brilliant 🤡.

I want Noah to always feel loved and supported, because he’s going to need that.

If you love Noah, then you’ll help him prepare for the storm ahead here–


About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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