March 26th is Epilepsy Awareness Day for the world.

Every day is epilepsy awareness day in our house. March is also our son’s birth month. He turned 10 this year. A miracle and a reason for a celebration we have yet to be able to properly have. When he was diagnosed with isolated lissencephaly at 2 we had no idea what our future held and what 10 would look like if we had the privilege of seeing that day.

This Spring, the COVID-19 virus has shut the world down.

This week, Charlotte Figi died of medical complications due to an illness her entire family experienced in Colorado. For those of you who do not know who Charlotte is, she is the inspiration and heart of the medical cannabis movement for children with epilepsy. She is the reason our son has access to the life saving oil of a plant.

While Charlotte and her family did not test positive for COVID-19, this tragic loss has brought a flood of emotions for every parent of a kid with epilepsy.

I’m going to lay this out plainly. Without fluff. I don’t want you to be aware. I want you to feel it. I need you to understand. I do not care about your opinions or political affiliations. Here are some facts.

COVID-19 can cause significant respiratory problems. These are the biggest threat to kids with epilepsy and our son. As kids with epilepsy get sick of any kind, their ability to fight seizures goes way down, then their ability to fight being sick goes down, and so on as long as they don’t get better. People are having to be treated in isolation in hospitals and those who are dying are doing so without their loved ones at hand.

In case I haven’t painted a clear enough picture, here it is. If my son gets this thing, he will have to go to the hospital where he will be treated in isolation. He may not get better. He will continue to have seizures and will could eventually die without me holding him.

Let that sink into to your soul. Don’t let it stay, you probably can’t handle it, but feel it.

These are our thoughts. We try to go about living out life in the crazy world like the rest of you. But ultimately, I don’t care about not being able to go anywhere, not being able see people, not getting to do or go places we love (Disney is closed, for real, they don’t do that). I need you not to care too. I’m begging you to stay home and love on those in your house and FaceTime or whatever it is you do with those who are not. Tell them you love them.

We are people of faith. I’ve said it before but now is the time to say again, our son is on loan to us. We don’t know when he will get called home to a life without pain or seizures with our savior Jesus. But I know that while he is with us, it is our job to protect him and love him.

I don’t mean to lead you to believe that we live in constant fear at our house because we do not. Despite the circumstances and the cost, being home with my family has been a tremendous gift. This is an opportunity we may never have again, especially while our kids are young.

How often have you said I wish I had more time to spend with my family? More time to get a few things checked off the to-do list? More time to spend in God’s word? More time to be an example, play games, talk with, and generally be more and better for your kids?

This is that time. In the midst of the chaos, find comfort and peace in the joy of our Savior who suffered death so that we might join him in eternity, without the pain of this world.

Let this Easter be one you remember always. Let the remembrance of the resurrection of Jesus this year remind you of the power that holds us and of His sovereignty in the middle of this insanity. Remember that when we experience struggle, we get stronger and are reminded to rely on God, not ourselves. Be reminded of hope for something better coming.