This was a difficult blog post for me to sit down and write because my heart has been so heavy for our Dravet community and the world at large. We are essentially at war, against an invisible enemy. The situation is unprecedented in our lifetime and there is so much uncertainty and fear. But, what I do know is that our Dravet community is resilient; it is strong; and it is supportive. We have each learned to be prepared, educated, and cautious to keep our child safe. We are already familiar with self-isolating for periods of time. We are used to being creative to make things work in our less than typical lives.
DSF was started and has been built over the years by those who have a loved one with Dravet syndrome. We have funded research and built programs based on community wants and needs, and we don’t plan on letting COVID-19 stop that support. We will soon be announcing plans for Zoom meet-ups for caregivers, as well as a series of virtual educational videos on topics such as current research, pending clinical trials, and issues of concern for caregivers. And of course, our private parent support group will remain a click away.
As we know from when our loved ones were diagnosed, a scary situation is only amplified when you don’t feel you understand it or have any control over it. I want to know what you need right now. Please send me your suggestions on topics you would like to see presented in our educational sessions, or other ideas that would help you and the rest of our community in coping and feeling connected.
For me personally, as I reflect on this surreal new reality that we find ourselves in, I have made some choices for myself to help me stay positive:
- I will continue to find hope in research and the work that is being done worldwide, just as I have since Elliot’s diagnosis.
- I will remain vigilant and cautious and take all necessary steps to protect my family, friends, and our local community.
- I will continue to support my Dravet community that has lifted me up and supported me over the years.
- I will remain ever thankful for the medical professionals at the forefront of this crisis (some of whom are also Dravet parents) who have put themselves in potential danger for the greater good.
- I will also remain thankful for all of the workers who make up the backbone of our country and are keeping our infrastructure running in such uncertain times – this includes police, fire fighters, other first responders, truck drivers, retail workers, teachers, and so many more.
- I will remind myself that everything is temporary, and that this too shall pass. That doesn’t mean that it won’t be scary or difficult or take a longer than I hope, but the only choice we have is forward.
- I will continue to allow myself to see the beauty of this life in every place that I can. That includes art, music, and kind words and gestures – large and small.
- I will allow myself the genuine belief that the unity and unrestricted sharing that is happening in COVID-19 research will continue into the future and become the new standard, particularly for rare diseases.
DSF is here for you, and we will all get through this together.