As Mothers’ Day has been approaching, I have been examining epiphanies about mothers, from mothers, and thinking about all epiphanies related to motherhood in general. And then I received this email from my friend, John Scott:
We had a boy and a girl!! Everyone is great.
Ovid Alexander Scott (Ovid) was born first around 8:45am,
6lbs 11oz, 20 inches
Hattie Hardage Scott (Hattie) was 6lbs 13oz, 20 inches
John Skipper Scott
This is fantastic news for anyone to read – a proud father announcing the birth of his twins. But this particular announcement is extraordinarily wonderful. John is the husband of Laurian Scott, whose epiphany in my book is about many things, as are all of the stories I have heard – but Laurian’s story is, at its core, about a mother’s love, and John’s email is its epilogue.
John and Laurian lost their daughter, Thisbe (age 3), and then their son, Noah (18 months), within a year of each other to Brown-Vialetto-Van Laere (BVVL) syndrome, a toddler form of ALS (Lou’s Gehrig’s disease). BVVL like ALS, has no cure and the pain and suffering involved are excruciating. Needless to say, the devastation of their loss and witnessing what their children had to endure was beyond traumatic. In her interview, Laurian says,
“For me, hope died with Thisbe and Noah. So did my faith. I even felt I’d lost the ability to love. I couldn’t feel anything outside the pain, the ache to be with my children again…I haven’t told anybody this, but I spent that year longing to “accidentally” leave this world, and sort of trying to.”
When John and her family intervened, realizing she was suicidal, Laurian knew they were right and that she needed help. She wanted to go to a monastery that she knew about in California rather than a hospital facility though, which puzzled her family. (Laurian nor her family knew anything about the monastery, even what kind of monastery it was, and when it ended up being Catholic, none of them were Catholic or knew anything about Catholicism and still don’t.) But it was where she felt she needed to go so they sent her. It was there that she had her epiphany through a conversation with a compassionate priest that got her back on her road to healing. I won’t tell the whole story here, but this is what happened after she had her epiphany:
“It was like a sigh-a long, long sigh. I thought, ‘Okay, so I’m going to be okay. I don’t really have to play by any rules. Maybe I can’t take my own life, but I don’t have to just believe in Jesus, or just do this or that, or go to this church to get to heaven. Really, all I have to do is just live according to love and I’m going to be okay.’
I learned that the only thing I’d never lost is the eternal flame of love I have for my children. That sits right here in my core.
In my search for God, the only thing I can say I really believe in right now is love. That is the one thing that I can palpably, tangibly say that I absolutely know. The only part of the Bible I believe in right now is that God is love, and I believe in love. Right now, it’s love that guides me. Love is all that matters. Love is all that we’re here for. And when we lose sight of love, everything goes dark and bleak.
My husband and I have this urge to give the world the piece of Thisbe and Noah that was here, which was beauty, love, and everything good. As long as we can give that back to the world, then they’re still living somehow through us, and we can honor them and their lives. To do this, we’ve established a foundation called the Olive Branch Fund: A Thisbe and Noah Scott Legacy. We actually started it when Noah was sick, a few months before he died. In our very last-ditch effort to save him, a doctor told us that no one could really help us until the gene is found that causes BVVL. We had no idea how to go about helping science to do that, so we sat down to figure it out. We are still finding our way—and only with the incredible support and help of our friends and family would any of this be possible. We started the Olive Branch Fund to be able to pay a researcher to find the gene. Noah died before we could find the gene and a cure, but just last month we did identify the gene that causes BVVL. We will keep going until we find a cure, and our organization has evolved and is still evolving into an international advocacy organization for all pediatric motor neuron diseases. It’s our goal in our lifetime to be able to say if Thisbe and Noah had been born now, they wouldn’t have had to die.
The courage and spirit my children displayed inspires us. It’s impossible for us to go through life not trying to do what we wish people had done and would do for us. So actually, maybe I do believe in another thing in the Bible – The Golden Rule.”
Almost a year to the day after I interviewed Laurian and they identified the gene that causes BVVL, the Scotts have welcomed their healthy new son and daughter – positive that they are BVVL-free. Because of John and Laurian’s love for their children, they are advocating for children around the world with motor neuron diseases and perhaps no child will ever have to suffer from BVVL again.
This is only one story of a mother’s and father’s love for their children changing the world, but it is one that I happen to be a steward for and am thrilled to be able to share their news and the happy epilogue to the story! I also love the serendipitous timing of it coming to my inbox right before we officially celebrate mothers.
To read more about Laurian and the non-profit work they are doing, advocating for children with neurological diseases everywhere, go HERE.