Can you have too much hope? Or too little? I think there’s no parent who doesn’t want a cure for their child, to stop the process of going blind. How you act upon this is different for all of us. I have struggled and still struggle with this. How can I make a difference? Is what I do enough? Does it matter? Can I do more? What is the right thing to do?
Some of us start a foundation, raise enormous amounts of money, speak with scientists, and actively pursue a treatment. Some of us raise awareness and tirelessly advocate for people with Usher syndrome. Some of us stand in front of a crowd and share their story to inspire others or trigger change. Some of us run for miles or bike across a country to raise money. Some of us get in front of a class and educate students or caregivers about Usher. Some of us dedicate all their free time to volunteer for an Usher organization. Some of us bring people together to connect. Some of us organize fundraisers, big and small. Some of us participate in trials or workgroups to help researchers. Some of us organize Usher camps for kids. Some of us get in front of a camera and tell the world about what’s happening to them. Some of us fly across the world to attend Usher meetings. Some of us pick up the phone when another Usher parent calls. Some of us talk to people in the right places, making sure our kids get the care they need. Some of us get out of bed every day, go to work, provide for their family, and just try to be the best mom or dad they can be.
And you know what? It’s all good.
How and if, you as a parent, choose to engage is up to you. Last weekend we met with 30 Usher parents. Some of them only months into the diagnosis and yet they spoke so bravely and full of hope. For others it had taken years to come to a meeting like this. Some of the parents were volunteers for the Dutch Usher Foundation. Some of them organize online Usher talks. Some of them work together with doctors and researchers. Some of them are taking a break from all Usher related activities. Some of them oversee a big national fundraiser on Usher Awareness Day. Some of them will run half a marathon next weekend to raise money and awareness. Some of them write a blog. Some of them just listened.
And you know what? It’s all good.
You decide what’s right for you. It’s as simple as that. Do you feel like running and want to raise money at the same time? Run Forest run. Is your talent to bring people together? Go ahead and make those connections. Are you a natural advocate? Let’s get you out there. Are you not comfortable in the spotlight? Great, there’s much work to be done behind the scenes. Do targets get your blood pumping? Try fundraising. Does all of the above sound emotionally draining?
Take a break. It’s all good.
Your greatest and most important job is being a parent, and being a parent of a kid with special needs is hard work. Be kind, to each other and to yourself. That’s always the right thing to do.
