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Gary's avatar

Jeff, as a member of your virtual community, I'll share what I learned about mutuality, stress, relationships, and community when our first child was born with a totally f'd up heart.

(Anybody reading this who is expecting, please know what he had was an extremely rare condition, so please don't worry!)

The stressors on our relationship: Carson spent his first month of life in a neonatal intensive care unit, fighting for his life. At four months, he weighed seven pounds and had to undergo open-heart surgery. It was touch-and-go, but he made it.

At five months, he experienced sudden congestive heart failure, leading to an air ambulance and a second, emergency open-heart surgery. He weighed six pounds. Somehow, by the grace of God, he survived. Following that, he couldn't eat for two years, so we fed him through a tube in his stomach.

More sh** happened, but you get the point. The stress on our relationship was immense and continuous.

As a psychologist, I knew that we tend to naturally turn to our partner for understanding and support when we feel depleted. But we were mutually depleted. Neither of us had anything to give. It would have been easy for the relationship to go south from there by blaming the other for somehow "not doing it right."

The mutuality of our community helped save us. People all over the country, whom we did not know, were praying for us. We could feel their energy, much like you encouraged us to do in the meditation. My boss gave me the space to get my work done in odd hours. Our immediate community of friends and family offered to help where they could, and we let them.

And we gave each other space and grace wherever we could.

For example, we couldn't fix it for each other, but we could listen. We could share our mutual experiences, e.g., "What did you think when the doctor said this?" and "Did you notice what that funny lady said when she got off the elevator at the hospital?", etc.

It was like lived meditation. We stopped trying to control the uncontrollable. Instead, we learned to go with the flow, cried when we needed to, and laughed when we could.

By sharing our lived experience and allowing the mutuality of our extended community to support us, we survived.

Today, Carson is thirty-seven years old and on his second pacemaker. His life's journey has not been easy, to say the least.

But now he is married to a wonderful woman, and we look forward to welcoming their first child, and our first grandchild, into this world soon.

Life is tough. Life is grand.

And when things get overwhelming, I use a mantra my wife shared with me years ago:

Breathe in God. Breathe out love.

Thanks for listening.

Louise Fearn's avatar

One of the things that got me through parenting my neuroquirky kids (now 17 and 22!) and the systems surrounding that was your voice and meditations! It was a port in the storm some days! I ended up writing a kind of map for parents going through this very experience. It’s a practical sense of self journey that kept me sane called Wide Open Spaces: a wellbeing journal for parents of neurodiverse children. It mentions you! Let me know if you’d like a copy. This feels full circle on the receiving and giving front. Love this one too. Lou Fearn

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