As a society we are moving from crisis to crisis with unparalleled stakes and it is unnerving. Just this week we were hearing about the rationing of medical care in Los Angeles and the next moment domestic terrorists are storming the US Capitol. It is going to take us time to recover from all of this. To not be anxiously waiting for the next heavy foot to fall.

We are a nation divided by many forms of inequality. These problems feel large and oppressive, difficult to define and impossible to fix. You know what else feels that way? Having a child with an incurable condition, yet these parents and caregivers never give up and neither can we. Maybe it’s time we start asking ourselves in moments of crisis: what would a special needs parent do?

The way our country is currently walking a tightrope all while playing a soul crushing ‘game’ of whack-a-mole is all too familiar to myself and so many others. When Adelaide was alive I was aware of the civil fires occurring out in the world, but the fires in my own home required my near undivided attention. For the last two years of her life we lived in a near constant state of emergency. 

However, in her absence, in the new stillness of our home, the fires of the world are blinding and suffocating. They trigger similar anxiety to what I felt when Adelaide’s oxygen saturation would crash or when we would go days without seeing her open her eyes. If you have ever wondered what it must feel like to be a special needs parent, imagine the stress and anxiety you’ve felt watching the news this past year but the source is in your own home. Imagine the love and correlating pain you feel for our suffering nation but instead of our country it’s your child that is suffering. Of course, the difference being that you can turn off the news and you can close Twitter or Facebook, but you cannot turn away from your child.  

This may come across as an absolutely bizarre sentiment, but during these surreal times, while my heart goes out to special needs families that are battling the fire in their own home, I am also a little jealous. Jealous that they have a distraction, a grounding force in front of them that reminds them what is truly important in this life: family, love and empathy. It all boils down to these three words and I have experienced nothing in my own life that made this so evidently clear than caring for and loving Adelaide.

Look, I’m not about to sit here and ask “can’t we all just get along?”, I know this is much more deep-rooted and complicated than that. We are only just beginning to reckon with the fact that our nation was built on the backs of slaves and that our current institutions still reflect this. But we can take a page from the special needs families that taught me so much when we started out on this journey: we must fight for our best available quality of life with love and empathy.

This isn’t a hippy dippy concept and it is not owned by Christianity or any other religion. These are basic human values and it is past time that we check ourselves and remember to live AND act with them in mind. Let’s start small within our own families making sure that we are acting with love and empathy within the walls of our own homes. Then branch out to our neighbors, our extended family. Clearly we don’t have the energy, time or bandwidth to love and care for every stranger the way we do our children, siblings or parents - but we can extend empathy. Or, if it is too foreign to understand the life that someone else has lived, the hardships they have faced, at the very least we can show compassion.

So, the next time you see a situation on the news, or a crisis playing out in your community, or perhaps even in your home, stop and ask yourself, “what would a special needs parent do?” Because there is no fiercer advocate, no more passionate lover, or more tender empathizer. Special needs parents are not perfect. We are not martyrs. Mistakes are made when there is no clear path forward but we don’t get to quit because it’s too hard. We learn, take notes and keep trying. We fight for inchstones out of love and we educate ourselves with scientifically-proven facts because we must. Then we make the most difficult decisions you can ever imagine because there is no one else to make them for us. This is what faces our nation, our government, our society, our communities. These are complicated problems with difficult to understand and likely incomplete solutions, but there is hope. As a special needs mother who fought with every cell of her body for her terminally-ill daughter, I stand before you promising that as long as there is family, love and empathy then there will ALWAYS be hope.