Having a child with a disability is like planning a trip to Hawaii

Hi guys,

I’ve been thinking a lot this past week. As a family, we’ve been trying to shift the way we relate to Clara. We want to help her become more independent, but that’s easier said than done. I wasn’t even planning to write this, but something happened that made me stop.

I was fixing a tech issue on our website and decided to Google “Clara Woods” to test it. I noticed this new AI tool that gives you a summary of the person or topic you search for. When I saw what it said about Clara, I smiled. Then I searched for my name.

I was shocked.

It said I open up about my world with vulnerability and that I’ve been showing the importance of the Inclusion Matters Movement.

I was kind of shocked, because I never thought about myself as Google AI wrote.

Most of the time, I feel like I’m being repetitive when I write to you. Always sharing the same dramas of my week, always talking about how hard things are.

I worry it’s boring.

Maybe I should stay quiet and post about new art or mugs and say “link in bio.”?

But reading that one sentence made me stop and ask myself:

How can I bring more value to this community we are building together?

1. To everyone

I think if we talk more — truth talk — about what we go through, we can educate, we can. bring light to real situations and we can break the fear of others.

So many people don’t ask questions anymore because they are afraid to say the wrong thing. But how will we ever promote change if we’re all silent?

2. To families with someone with a disability

A while ago, Carlo and I read something that said:

“Having a child with a disability is like planning a trip to Hawaii. But when you land, you realize you’re not in Hawaii — you’re in a different country, with different weather, different language, and nothing looks like what you expected.”

And I felt that in my bones. You grieve a dream, but you’re also trying to build a new one.

It’s lonely. 
It’s exhausting.
You’re constantly second-guessing every decision.
Wondering if what you’re doing is helping or holding them back.

Last week I had a huge realization:
We keep saying Clara is a young adult, but we treat her like a child.
How much are we actually stopping her from growing?

It’s so hard to balance it all :
- the protection
- our fears (of taking the wrong decision, of taking advantage, of respecting her in her decision, even if we know it is wrong - Why is it so easy to do it with Davi?)
- the tiredness (lots of it)
- and still try to build a joyful life.

We’re trying to change that.

We’re changing how we treat Clara, and it is a family effort.

We know how much we are blessed for the opportunity we had to build this journey and this community because we created a world where we can speak up, where Clara’s art and story connect with so many.

But so many families don’t have that. They’re facing it all with no support, no hope, and no break. NO BREAK!

So, if you’re reading until here, let's create a movement where everyone of us can think about a family with someone with a disability, and you can just do one of these things:
- Be kind. 
- Say hi. Connect with them. Ask how they are inside. And please listen to the answer with grace. 
- Invite someone out for a coffee.
- Write a message.
- Just let them know: I see you.

Let us know how it goes! Sharing our experiences, victories, and failures is what will help us grow and improve.

PAY ATTENTION:
- Next Tuesday, September 09, we are launching the Halloween Collection. I'M IN LOVE WITH IT. Clara drew Wednesday and Frankstein! Every time I look at it, I want to cry. I love them so much!

We will be dropping the Original Artwork + Halloween decoration + a jacket + a sweater + a flare leggings + a dress +  a pillow + a mug! 

So stay tuned on our social channels, where I'll be sharing more about it. Everyone in our mailing list will have early access to the collection!

Click here to read the story about Wednesday and Frankstein!

Thank you guys! Love you!

Betina