When you have a special needs child, good people will find you. They will fucking hunt you down. My family has received more love, support and good energy from family members, friends and strangers than I could ever imagine. Early on in the girls lives, I was given some great advice by a mentor. She told me to build Juniper a village. To always keep working to build up her village - a community of people that could support her and the rest of the family.
Coley and I decided to reach out for support. We opened up a fund for Juniper, shared her story on social media, started a blog, reached out through programs, and connected with people as much as we could.
If you are reading this, you are part of the village we've built.
Thank you for that.
When we started sharing our story, good people came out of the wood work. They donated to June's fund. They shipped and brought over food, clothes, diapers and wipes. They shared their own stories with us. They sent us cards, good energy and prayers from their gods. They helped connect us with resources and fill out health insurance paper work. They stayed with Laurel and Townes while we were in the hospital with June. They took time out of their own busy lives to give something to us.
It feels so good to be around so much good energy. It feels good to build our village. We need the support.
If you have a child with special needs, ask for support. Don't be shy or proud or reserved. Don't deprive your child (or yourself) from the gift of being part of this kind of community. Good people coming together can be a powerful thing.
Another one of the great gifts of having a special needs child is what I call the lens.
Most of us walk through our lives trying to project our best selves in public. Put on makeup, work out, dress up, deck out. Whatever the fuck. Post happy pictures on Facebook and Instagram. I do it too.
But children with special needs help shed that horrible cloak of falseness and expose the reality beneath it. They provide us with a lens to more sensible (and sometimes more harsh) world - the real world that lies just outside the edges of that Instagram photo.
I watch the way people interact with Juniper through the lens. When we are around something different from ourselves we are closer to our true nature.
Some people are very attached to her, others are afraid. Some people scoop her up and give her a big hug, others stand back. Some people want to see her all the time, others stay away.
It is interesting to see the world through this lens. Through it, I can see fear, strength, empathy, love, altruism, apathy. I can see more of the true nature of people, and I'm sure Juniper sees it too. No makeup can hide it. It's just out there.
Now, let me be very clear - the lens cannot be used to judge people. That would be counter to what it provides visibility into. Judgement is not what this is about. It's about getting past the bullshit to see a more raw, pure, simple world.
The kind of world I want to live in.
[next week we return to our story]