I have had the most difficult last two weeks in my life. My sweet son Ben died on July 30. He was 26. He had lived his life with cardio-myopathy and resulting pulmonary hypertension. Diagnosed at 2.5 years and given 18 months to live. He far surpassed any medical expectation and filled our lives with love and music. I’m reeling over here while holding his love close and knowing we had a beautiful time together.
This chapter of my life is kinda weird for me. Feeling so vulnerable and sharing that here – it feels authentic yet a bit uncomfortably public. Having thought deeply about it for the last two weeks, it feels right. It feels like this change in my life has an impact on my forward motion. So to be truly authentic it feels important to share this here.
As I navigate re-entry into business and making positive impact in the world, you might be interested in reading about my grieving process. You might have helpful input into how to go about this. Finding my way back into something that feels vaguely normal seems confusing yet the idea of focus outside of my grief is needed and will surely be helpful to my healing.
Here is my prayer that I read at Ben’s memorial where hundreds of people came. We prayed, and hugged adn spread love with most moving and powerful live music created by his friends to carry him up high.
God. This is hard. I don’t want to remember Ben, I want to hang out with him and dive into all that he is. I want to get inside his soul and wear it with so much love that nothing can bring me down.
I think that is exactly what I am doing. Ben gave me an invisible cloak that allows me to see the love all around me. Like – ummm right now – take a look around you and do you see it too?
As a matter of fact, I am channeling Ben’s stage presence right now – Never before have I found comfort speaking to a large group of people – and you know what, I am ok up here.
My son Ben was an angel – oh no, he IS an angel. I noticed this first when he was such a small baby – he was calm and sweet and he showed me the way to patience, listening, and my power to create the life of my dreams. With Ben all things were possible.
Most of you know Ben was diagnosed with cardiomyopathy and resulting pulmonary hypertension at the age of 2 and a half. His prognosis was a life expectancy of 4.
Shortly after that, the worst day of my life, I was sitting on my front porch after tucking Ben into his bed. I was thinking about the story the doctors were telling us our lives would entail. I was crying, imaging my life without my boy. Imaging what I would do and how I would handle the space left in his wake.
As I sat there wallowing in my grief, a clear message came to me – an alternative option. There was a decision to be made. I had the ability to walk away from the edge of the abyss of despair, fear, and worry and into the light of living each and every day with my son as a blessing from the universe. And that is what I did.
For not 18 months as the doctors had predicted – but rather for 24 years 2 months and 24 days.
That is a whole lot of blessings I got to live and there are so many more that continue to shower me and my family.
Ben taught me so much – from before he was able to speak to the end of his life – I learned more than I could possibly have taught.
He taught me
The value of right now;
A little human’s ability to control his heart rate;
He taught me to trust my intuition;
To recognize the power of our thoughts;
The importance of self-care;
He taught me Love; and Bravery;
He taught me history, eloquence, physics, analytical thinking, he taught me a lot about music;
Oh, and he taught me a lot about each one of you.
He made an impression on each of you.
You are here with your love and support and grief because of that impression
So my dear friends, and family, we have a decision to make here today. A decision to not leave here feeling sad, or that you wished things were different. Make a decision to move into the rest of your lives with some of Ben’s light. Know that this moment – right here and now, as we are together to celebrate one particularly awesome human, this moment is beautiful.
This moment was given to each of us by Ben.
This moment is a blessing.
This life is a blessing.
Each one of you here today is a blessing.
Walk into the rest of your lives knowing that you are a blessing to everyone who loves you.
Ben taught us that.