What is lost, what is kept, and what is gained

In July of 2007, I gave birth to my son.

We named him Dante because the story of Dante Alighieri and Beatrice is one of the most beautiful tales–though Dante had to literally walk through hell to find Beatrice.

In naming him, the thing I had wished most for Dante was to find an epic love. And in a way that I could not have predicted, he did–Dante became the love of my life.

At just 3 months old, Dante had his first seizure. By 5 months, multiple seizures, and by 7 months, I was in the PICU watching a machine breathe for him. For the first two years of Dante’s life, we spent more time in ambulances, emergency rooms, and hospital beds than at home.

Dante was diagnosed with Dravet Syndrome, a catastrophic, progressive, neurological condition. The prognosis for kids with Dravet is terrible; many will not see adulthood. Too many. And the loss of skills, the painfully slow development and all the co-morbid conditions that go with Dravet devastate the hopes and dreams that every parent has for their children.

Life as we knew it ended. Once I had a career, was happily married, and had a full and amazing life in London. Now I was a mum to a medically fragile child. And I didn’t just lose the life I had been living; I also lost my future. All those plans, dreams, beliefs about what life would be like also ended.

But here’s where something amazing happens. In the space between despair and grief, and the acceptance of the unacceptable, there are gifts to be found.

One is finding a community of parents from all over the world, who deal with Dravet, with a grace that can only come from a deep, deep love. Together we fight for better treatments, hope for a cure, encourage each other, celebrate small victories, see the beauty of each other’s kids, and share what helps–and what doesn’t. And we mourn together–far too often.

These women teach me so much about love. I am lucky to have met them. But I also wish I had never met them. And I wish they had never needed to meet me.

I can also be grateful for all that Dante, as he is, has given me, and loathe the disease that robs him of a “normal” life. I can love him unconditionally, and with a fierce conviction that he is perfect. I can mourn the past, and I can be grateful that I am no longer the person who lived that life. Because this version of me is better for having met Dante in every way.

Then there is Dante. He has no idea he is different. He does not know that he lives with a ticking time bomb in his DNA. He just loves, and his love is so unconditional it is humbling. He wakes up with the sole purpose of finding his bliss.

Parenting Dante has taught me much, but if I were to put it into a single sentence: I have learned to live in gratitude.

I try to emulate Dante’s innate ability to have no regrets or hopes, because it is in wanting that we suffer.

Still, I do hope.

I hope for a nonprofit healthcare system that can focus on cure instead of treatment. I hope for that cure, for the missing piece of the genetic puzzle. I hope we all learn that inclusion without accommodation–is still exclusion.

And I hope that if you ever get a chance to be loved by someone like Dante, you grab that gift with both hands.

Jacqui Tapnack is a marketing professional at JUF and the IsraelNow program, currently living in Northbrook by way of London and Johannesburg. She is an expert in Dante and a vocal advocate for the rights of those living with special needs and their caregivers.