Mark Meyers and Tenya with their children

In 1999, filmmaker Mark Meyers and his wife, Tenya, learned that their newborn son, Kaymen, had severe cerebral palsy – leaving him with no ability to hear, to see or to suck/swallow; only his brain stem was functioning. At the time, the Meyers were not at all familiar with hospice care, but today they count themselves among the field’s strongest advocates.

Here Mark talks about the experience as well as the public service announcement he is creating to raise awareness and contribute to a cause he now believes in.

How did you finally learn about palliative and hospice care for your son?
We learned about it through the West Side Regional Center in Los Angeles and our pediatrician, Dr. Richard Levy.

What was your initial reaction to hearing the “H” word? 
Nervous and scared, but at the same time we found comfort in knowing that someone was going to help us through this situation.

What did you and your wife find most helpful about the services you received?
The love hospice brought into our house. I will never forget when the hospice nurse, Kelly Klem, entered our home for the very first time. She stopped, looked around, took a deep breath, smiled and said, “I can’t believe it! This house is filled with so much love and positive energy. I can feel it flowing through the air. This is good. You guys are going to be just fine. Kaymen is going to be just fine.”

She walked over and gave us both a huge hug and kiss, and told us that Kaymen was very lucky to have us as his parents. After days upon days of seeing our son in this condition and still alive, we became frustrated about when he was going to die. Kelly taught as that this was Kaymen’s time and he was going to decide when he was going to die. Kelly explained that this is the first time Kaymen is going to get to make a decision. When he dies will be up to him. Let him have his turn. Let him decide. Kelly taught us to surrender. This saved us.

What motivated you to produce this PSA about hospice care?
To change the world’s first impression of hospice. If people have more of an understanding that hospice is about living, they will be more open to it. They will be able to help themselves or someone they know who is struggling with end-of-life decisions – not only for the person who is dying, but also for the people who survive that person. If we can bring more awareness to people, we can help people and we can save people.

How is this PSA different from others that have been created for hospice in the past? 
I went to hospice a year ago with a crazy idea – let’s do something that people are not expecting from hospice. Let’s catch them off guard, get their attention, and send as much love their way as possible. Let’s make it a more abstract message filled with animation and a world we have not seen before. Let’s make it ‘its very own fairy tale.’

Then I heard the song, “It Must Be Love,” by the band Madness and had to have it. I showed the band and the record label company the concept and they granted us the rights to the song for this purpose. And now here we are. I hope everybody enjoys it.

Did the process of creating the PSA help you at a personal level?
Absolutely. Creating this PSA was something I felt I needed to do for a long time. It was something I needed to express on behalf of my son and the experience he gave me. Even though my son is not physically with me, his energy and love is abundant in this message. It feels good to do something that will help people.

How are you and your wife doing now? 
Tenya and I have three other children and a fourth on the way. Julian is 7, Bella is 5, and Lotus is almost 2. We adopted Lotus from Vietnam when she was 5 months old. I think our lives are very good and well rounded. We have our good days and bad days. And all you can do is take it day by day, and do the best to make the most of the moment.