Parenthood is full of decisions. And with each decision comes uncertainty.
Breast or bottle? Public or private? Pack or buy?
When you’re raising a sick or special needs kid, these decisions are even more frequent and carry so much more weight.
Get a second opinion? Enroll in this clinical trial? Request another IEP meeting? Call 911?
The decision fatigue and subsequent worry can be consuming at times.
As a family, we’ve been open about Dravet syndrome from the start. This never felt like a decision, it just was. As soon as I understood the gravity of Dravet syndrome I was ready to fight, and fighting meant advocating, sharing, empowering others to show support. In nearly eight years we’ve helped raise hundreds of thousands of dollars for research and resources thanks to our friends and family and the collective support for my daughter.
But, as with most parenting decisions, as she gets older I’ve questioned this over the years.
What if sharing was a mistake? What if I’m doing everything wrong?
When I have these thoughts I reflect on where we’ve been and I remind myself that this life is not a typical life. There is no roadmap for parenting in this situation and everyone is just doing their best, including me.
In our world, the future is not a guarantee. I’ve released the dreams that most parents cling to: sleepovers, graduations, an empty nest, and even something as simple as the next birthday or holiday. I now know how quickly things can change, and I have no control. (Does anyone?)
But there are some things I can control. I can advocate for my daughter and kids like her. I can build a community that understands, appreciates, and supports her. I can teach her how to swallow pills and comfort her when she has nightmares. I can encourage her to advocate for herself.
Though I am sure the uncertainty will always be there, as it is in parenthood, my worries about openness were calmed this weekend when something truly incredible happened.
Her dance teacher had an opportunity to gift an event, and of all the people in her life she chose to gift it to my daughter.
Because she loves and supports her. Because she sees first hand how catastrophic Dravet syndrome can be. Because she understands how important this work is.
Because we were open.
I saw a ballroom of over 150 people, many wearing “Purple for Penny” shirts that we’ve sold as fundraisers over the years. I saw people from all stages of her life - infancy to first grade - show up to dance and support her. I saw a community of love and empathy. And I watched my daughter have the time of her life.
I saw a life that we built for her because of the decisions we’ve made. A life I never could have imagined before we were sent on this path. A life full of really good decisions.
Not every decision has such a clear moment of validation, but reflecting on this weekend has encouraged me to focus more on the wins. We move so quickly from one decision to the next we rarely take the time to appreciate how our hard work is paying off.
The clinical trial was right. Calling 911 was necessary. Packing lunch today was smart. Sending this newsletter out is a good idea.
You are making good decisions.
Pause. Validate. Then on to the next.
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Beautiful, friend. ❤️💜
Honored to be in your corner 💜💜💜