I’ve always had a complicated relationship with chance. I spent the first few years of my life in foster care and lived my post-adoption childhood in constant fear of being abandoned by everyone I loved. I was angry at my biological parents for putting me up for adoption, angry at myself for not being worth keeping around. When I was 15 years old, I met my biological mother. I was determined to ask her why she’d given me up, but for some reason I didn’t. In fact, I never did. Somewhere along the way I’d come to learn life is as much about the chances one gives as the chances one takes.
When my biological mother passed away in 2015, with my brother and I at her side, I no longer felt like she’d given me up. The last thing I ever said to her was, “Thanks for the chance, mom.” I was given a chance by a mom who wanted her son to avoid a harrowing life. A mother who wanted to give her child, me, a chance.
My son Henry was born on August 1, 2018. He’s the fourth child Brooke and I have brought home, but all signs leading up to his birth told us this experience would be different. First, in early 2017, we lost a sweet baby boy five months into Brooke’s pregnancy. It began as an ordinary ultrasound in an ordinary examination room, but when they couldn’t find a heartbeat Brooke was rushed to a doctor who frantically rubbed the ultrasound wand over her belly. It seemed a lifetime before he said, “We can’t find a heartbeat, I’m so sorry.” I’ve never seen Brooke’s face so white, felt tears so strong, or experienced sadness so profound.
“What are the chances,” I thought to myself as we walked to the parking lot in a haze of confusion and despair. We got in our car and headed to the hospital where Brooke would do what still seems impossible: perform a stillbirth of our son. We entered labor and delivery without a carseat in tow, knowing we’d be leaving empty-handed. Although on the same floor, they keep the parents who are celebrating life separate from the parents grappling with death. The distant sound of a baby’s cry became a stark and painful expression of inescapable heartbreak.
We named him Jackson and still have trouble talking about him. I could never say out loud the words I just wrote. A year later we learned Brooke was pregnant with Henry. On April 10, Brooke’s birthday, we found ourselves in the same ordinary examination room from the year before. The same room with its beige walls, stale, cold air, and overwhelming scent of rubbing alcohol. This time we were there for a routine 20-week ultrasound. This time the doctor found multiple tumors in Henry’s heart.
I’ll never step foot in that godforsaken room again.
They monitored the tumors in Henry’s heart throughout the pregnancy. We were told the tumors could be due to a variety of things, but the most likely cause was tuberous sclerosis complex (TSC). We googled TSC and cried. At our next appointment, they told us not to google TSC anymore.
Henry joined our family in the late afternoon of a long, hard day. As soon as Brooke held him, he couldn’t stop staring at her. Their connection was instant. Henry was looking for her when his siblings came to hold him for the first time, and still looking as they whisked him away to the NICU to perform what seemed like endless tests. Three days after he was born, Henry underwent an MRI to check for tumors in his brain. When the doctors led Brooke and I into a small room to reveal the results, the solemn look on their faces told us the news. They’d found tumors. The official diagnosis was TSC; a rare genetic disorder that causes seizures, learning problems, and intellectual disabilities. Heartache and uncertainty were the immediate, terrifying side effects. They gave us the room. Another forgettable, unforgettable room where we got off our knees, wiped away our tears, and steeled ourselves for the unknown, together.
Eleven days after he was born, we brought Henry home and transformed our bedroom into a makeshift NICU. The tumors in his heart should go away over time, but the tumors in his brain will never recede and could become life-threatening. There’s a chance Henry will live a somewhat normal life, and there’s a chance his life will be forever altered or cut short due to TSC. It’s impossible to know until symptoms begin to manifest.
My son’s life is up to chance.
Henry’s a beautiful baby with brown, impossible hair and a bright smile. He is curious – always looking around, making faces at his siblings, and spending as much time as possible with Brooke. And, goodness, does he love Brooke. The way she looks at him, says his name. The way she holds and feeds him. The way she protects and prays for him. The way she loves him.
Brooke’s love for Henry and her hope for his future have sustained our family and given us a reason to expect better news tomorrow. My children believe her to be an angel, and she’s become the religion to which I devote all of my faith. Her love holds our family together. It’s a love that inspires generosity and an indelible sense of presence. It’s a look in her eye that says, “We got this, together.” She makes me brave and helps me feel less alone, more willing to take a chance and face the unknown. She inspires me to love.
Henry has a chance. I don’t know the odds, but I know love is pushing them in his favor. Where there’s Brooke, there’s love. And Brooke’s never going to stop looking at him with those eyes that say, “We got this, together.”
(Design: Josh Fowlke) (Editor: Rachel Swan)