I was talking to a friend the other day. A friend who also has a teenager with some special needs.

It was so good to be able to relate on some things we are traveling through as mothers. The way our families have adjusted, heaved and shifted as the “special” needs get more pronounced and much more difficult to maneuver.

As Lucy grows we get deeper and deeper into unchartered territory.

Things others can’t understand. Things WE don’t understand either, for that matter. Things we are trying to pivot and adjust to while still nurturing and helping her grow.

So we were excited to have an opportunity to gather with other BBS families while we were in Utah.

To have Lucy interact with other kids with her same syndrome.

Love this “village” of mothers who are all grappling in their own ways with growing special needs.

These couples who are doing their best to be the parents their kids need.

Life is a rollercoaster sometimes.

And it’s pretty great to have others along for the ride right alongside you.

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4 Comments

  1. This is so cool. I’m sure Lucy appreciates it.

    I forgot to ask on a previous post, so please excuse me for hijacking this one….What exactly does your brother do for a living? Doesn’t seem like he has a regular job… does his wife have a lot of money? Wondering how they support themselves. I have heard you say that they barter for a lot of things, which might work in some cases.. but like rent, groceries, utilities, etc… I would love to know his occupation. Thanks in advance.

    1. I followed their blog for years. Though it has not been posted to for quite some time. When the older kids were little he built houses. He didn’t want to miss their childhood and so they decided to downsize and stick with money making hobbies and live a more flexible lifestyle. His daughter did that film Wagon and that showed how he buys a certain make and model of vehicle and turns them into vehicles that run on used cooking oil, that would make money. He has been doing that for years. And from the film it still seems a source of income. Many years ago his wife gave piano lessons. She has a degree from Harvard and can pretty much do anything from anywhere part or full time and that can earn cash. They have had chickens off and on enough to sell eggs. Obviously his construction knowledge helped them buy a fixer rather affordably and make it nice to live in. They both seem to have a number of skills that can lead to cash. They don’t rent. They also don’t have an AC or likely even a Furnace. Climate does not require them. They have not needed to spend a penny on gasoline for years. It is not uncommon in Hawaii to have a solar panel or two installed to cover some of the electrical in the home so their light bill might be drastically be less than if on mainland. You don’t have to fully go solar to lower that utlity bill and the cost for electric is so high the panels pay for themselves. They don’t do daylight savings in Hawaii. It’s pretty much light through 7pm. Less hours for lights on. May not need a dryer year round. They have a normal size home as well. School uniforms for public school over there, maybe just a tshirt with logo if they have them at all.

  2. To clarify – I mean Jonah. The one that lives/lived in Hawaii, went on the long road trip, now moved near you.

  3. What a wonderful opportunity to unite as parents for the good of their children! ❤️
    Isn’t it amazing the connections that are made when you have the same challenges? Someone who can relate what you’re going through? ( I know I have found strength in those friends. ) What a great strength you will be to one another. What a wonderful looking group, They all look like wonderful families.❤️

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