I had dinner this week at a fabulous Italian restaurant in Washington, D.C., just down the street from Capitol Hill. It was a high-powered meeting with two very important young adults, one of whom is a new intern on the Hill and the other is my daughter, Johanna.
While their lives seem to be worlds apart, one living independently in an apartment in the District and one who will navigate life with a friend by her side, they share a common bond — they both have had brain surgery.
Both Jake and Jo have are two of about 50 people in the United States and 100 worldwide who have been diagnosed with a rare, genetic disease called CCM3.
CCM3 is a genetic mutation causing multiple lesions in the brain which hemorrhage frequently and can cause seizures and cognitive and motor impairments. About half of the people affected by CCM3 also develop neuro-muscular scoliosis and benign brain tumors. Johanna is among those affected with a higher rate of hemorrhage and these other neurological issues related to CCM3.
Sitting next to these two amazing young adults as we scarfed up our delicious dinner and bantered about summer vacations and Jake’s new position as a Capitol Hill intern, one would never guess these two have had multiple brain surgeries between them.
I felt like I was watching our lives flash before our eyes as I listened to Jake tell stories of his first two days at work, navigating the halls of the Capital. Johanna excitedly shared Jake about the adaptive Surrey bike she’s going to be getting that will allow her to ride on the North Fork with her service dog, Rae.
He responded in kind with great interest and understanding to Jo’s sharing about her life. Even though they differ greatly from his own, Jake understands Jo’s challenges better than any young guy her age.
As I watched their eyes brim with excitement, random thoughts of conversations between Liz, Jake’s mother, and me ran through my brain.
The first time Liz and I talked we became instant friends. Liz, two of her three boys and Johanna had all been recently diagnosed with CCM3. Our two families had been battling the unknown disease for years before the mutation was even discovered.
Liz and her boys and Johanna were among the very first patients in the world whose blood was sampled, leading to the identification of this genetic mutation – a mutation which has caused Johanna and Jake to have multiple brain hemorrhages, seizures and surgeries in the very early years of life.
We connected through a mutual friend and founder of the Angioma Alliance, a grass-roots organization in which Liz had been involved since the beginning. Liz and I tip-toed around religion and politics in our first phone conversation just after the diagnosis, but soon realized we were kindred spirits.
Not only had we handed our babies over to neurosurgeons for life-saving brain surgeries, but we both were “very Catholic.” We were both political conservatives, we homeschooled our children, and we both like wine very much. Liz is the only friend I have who carries a wine opener in her purse.
Since that first phone conversation nine years ago, Liz and I have found ways to fly across the country (the Neumanns live in California) to meet at the CCM3 clinic in Chicago or at Angioma Alliance family conferences.
This summer Liz hosted Johanna and me for a Breathing Underwater Retreat in her parish for 60 women. Liz and I packed a whole year’s worth of conversations into that busy weekend, sharing laughter, tears and more than a few glasses of wine.
Now, here I sat across from Jake, a recent high school graduate from California taking an awesome “gap year” position as an intern on Capitol Hill for House Majority Leader Rep. Kevin McCarthy. It’s quite a year to step into an intern position on the Hill, as this presidential election shapes up to be the wildest ride in United States history.
As we ate dinner and I listened to Jake’s stories of his first four days in D.C., I couldn’t help but interrupt him to say, “Jake I am so proud of you!”
He smiled that winning smile and gave me a very polite nod and “thank you” that I knew would make his mama proud. But really, how did we get to here, from Jake’s first brain surgery at 2 years old to interning on Capitol Hill?
Well, my friend Liz and I know a little secret about these amazing kids. We have a tested theory that’s been proven right most every time.
Behind most every child who’s had brain surgery, there’s a mother who has become an expert in all things related to her kid’s brains. We can diagnose seizures without an EEG and pick up on the subtlest of neurological symptoms which indicate pressure changes or hemorrhages in the brain without a CT-scan or an MRI. And world-renowned neurosurgeons know us by our first names.
We advocate for our kids’ needs better than any high-powered negotiators or any elected officials defending a bill before Congress. We research and learn about rare diseases and know how to read a pathology report and an MRI scan. And have I mentioned we drink wine?
What’s our secret? No, it’s not the wine (though a good Merlot helps.)
It all comes down to trust.
“Neuro-moms” learn to trust their instincts, though good mothers question their instincts as well as the doctors’ opinions all the time. We agonize over that gut-wrenching feeling that something is not right and we toss and turn at night until the dawn of day, all as our instincts are honing in on a new insight to help our kids.
We also trust our kids.
When they tell us that they don’t feel right, or they can or cannot connect with a doctor, we listen and we trust our kids. Even before Johanna could speak, as a baby battling brain hemorrhages, her eyes told me when something wasn’t right.
We trust them when they tell us that they are ready to ride a bike, to go to school without an aide and even to live all the way on the other side of the country to intern in the halls of Congress.
How did we get here? Ultimately, we place our trust in God.
Liz and I have spent more time on our knees in prayer than we have surfing the web for definitions of complicated medical terminology or lying beside our children in the hospital ICU.
We know where our strength comes from.
We trust in God.
One of my favorite Bible stories about trust is the one when Jesus is out at sea with his disciples. There’s a violent storm raging, the waves are tossing the boat to and fro. But Jesus is asleep.
In fact, the account in Mark 4:38-39, says he was “sleeping on a cushion. So the disciples woke Him and said, “Don’t You care that we are perishing?” Then Jesus got up and rebuked the wind and the sea. “Silence!” He commanded. “Be still!” And the wind died down and it was perfectly calm.”
Over the years, Liz and I have had our share of tumultuous storms. We know Jesus is in the boat on the water with us. We often times feel like He’s asleep. So we do what every mom does when somebody’s sleeping and we need them: we wake Him.
We wake God up in our boat just so we can hear him say, “Be still and know thhat I am God” (Ps.46:10).
And we do. We get still and we trust that God is who He says He is and we’re not alone in our struggle.
It’s all about learning to trust, whether you are handing them over for brain surgery, riding next to them on a bike or dropping them off to wander the halls of Congress alone. We get from here to there with trust.
Eileen Benthal is a writer, speaker and wellness coach with a B.A. in Theology from Franciscan University. She is the author of Breathing Underwater: A Caregiver’s Journey of Hope.
Eileen and her husband Steve live in Jamesport and have four young adult children. Their youngest, Johanna, is a teenager with special needs.
Eileen can be reached at CareforaCaregiver.com.