When you have a child with Down syndrome you’re sent home with an imaginary swag bag of extras that you’ll carry with you for life. The bag is heavy at times and can feel like a burden. There are the things you would gladly live without – the doctors and appointments, the therapy and evaluations, the fear and anxiety. You can’t discard of these things though, it’s all or nothing.
As you sort out your bag and take a mental inventory, you realize it has some pretty cool stuff in it. There’s a fierce sense of protection for your child, one that makes you want to fight for her. It becomes your strongest weapon against the world. It turns you into an advocate with Gladiator-like strength. You’ll find an infinite amount of patience, although it may take a while to kick in. It comes in handy when you’re waiting for those doctors to show up.
There’s even some extra stuff you can share with friends and family, the people who want to be part of your tribe. The bag gives you and your child the authority to be teachers. You’ll teach your tribe the extra vocabulary words that you learn from doctors and therapists and the endless amount of books and websites you read. You can show them about empathy, tolerance, and awareness and their lives will become richer.
You didn’t notice it at first but everything is covered in a thick coating of love and joy. It’s everywhere and is highly contagious. Some days it’s excruciating, but don’t let it scare you and don’t fight it. Let the love and joy guide you. Let them balance the bad days. Share them with the world.