By Lisa Leonard
The righteous cry out, and the Lord hears them;
he delivers them from all their troubles.
The Lord is close to the brokenhearted
and saves those who are crushed in spirit.
The righteous person may have many troubles,
but the Lord delivers him from them all;
— Psalm 34:17—19
Extreme, soul-breaking grief took me apart. What was, was no longer. What would be, was unknown. I was brought face-to-face with my complete lack of control, my utter lack of understanding. There was no pretending I had it all together, no way to fake anything at all. Grief took away all my defenses and left me exposed and naked.
I was starting a whole new life from scratch. I began again, step by tiny step. Wake up. Brush teeth. Put on clothes. Eat something. Every small action required extreme effort because I was learning how to do everything again in the face of the unknown.
I remembered the woman I used to be—the one who was carefree and laughed easily. That’s who I was before my son was born with a severe disability, before my baby was born with a hand that had just two fingers, before the world stopped turning. I couldn’t imagine I would ever laugh or feel carefree again.
For the first few weeks of David’s life, time slowed to a crawl. The minutes dragged on and on—hours felt like days, weeks felt like months, months felt like years. While the rest of the world moved on at normal speed, I felt like I was living multiple lifetimes in slow-motion grief.
Why? Why? Why?
For weeks, that one-word question circled my brain like a broken record spinning round and round.
Why does our baby have a disability? Why is this happening to us? Why, God?
For a while, it seemed like my questions fell into an empty void, echoing back nothing but more questions. Do I even believe in God? Is God real? Does he love me? Why would God allow this pain? The questions played in my head on loud and endless repeat. I never got all the answers, but I eventually began to feel a slow and sweet assurance. Yes, I believe in God. I don’t understand what’s happening or why, but I believe that the God of the universe loves me. I believe that he loves David. And yet even this raised more questions.
Then why, God? If you love me, if you love my baby, why?
It was a question I prayed over and over.
Eventually, God spoke to my heart—not with words, not with an answer exactly, but with a soothing calm. I am giving you a gift, he whispered. Just trust me.
The doctors told us David had Cornelia de Lange syndrome.
“He’ll never walk or talk,” they said. “He will be severely retarded.”
What was, was no longer. What would be, was unknown. Unknown to me, but not to God.
A gift? This doesn’t feel like a gift, but I believe you are God, I whispered. I’m confused. Nothing makes sense. Help me, God. Help me to see the gift in this pain.
For the first three weeks of David’s life, we went home every evening to our apartment while our baby remained behind in the NICU. Parents were not permitted in the unit during the daily shift change—when the day staff left and the night staff arrived. I wanted to be with David 24 hours a day while he was in the NICU, but that wasn’t an option. We needed to eat. We needed to sleep. We needed to take a break. But leaving him was torture. Every night at 7 pm, my heart broke as we said good-bye and kissed David’s tiny forehead. We walked to our car without our son. Our arms were empty when they should have been full with our baby, a diaper bag, and a car seat.
Every evening, we drove past that big oak tree as we left the hospital. We were strangers in our new lives—strangers to each other and to ourselves. The oak tree was a painful reminder that while it seemed like everything had changed, really we were the ones who had changed. At the sight of the oak tree, I felt alone. The world was the same and had moved on without us. The oak tree stood there as if nothing had happened, and yet our lives were turned completely upside down.
Every evening, I prayed the same prayer: Please, God, comfort my baby when I cannot be there. Hold him and nurture him while he sleeps in his incubator. Give my baby what I cannot give him.
We moved through the motions of our days in the NICU. We held David, changed his diapers, and practiced feeding him through a tube running through his nose into his stomach. Our two-bedroom apartment was only a couple miles from the hospital. David’s room was ready for him, but it had been prepared for a different baby. Inside the dresser drawers were clothes for an eight-pound baby, not a four-pound baby. We didn’t have one item of clothing that would fit our tiny David. The car seat needed to be adjusted to the smallest setting, and even then, we’d have to tuck blankets around David to keep him secure. The newborn diapers we had purchased wouldn’t fit David for another four months. We were as unprepared materially for the arrival of our new baby as we were emotionally.
Seven days after David’s birth, we sat down with a geneticist to discuss his diagnosis. We had so many questions, and we faced a journey with so many unknowns. We peppered the geneticist with questions: “What did we do wrong? What will David’s life look like? How severely is our son affected by this syndrome? Will David be okay? Are we going to be okay? What do we do next?”
The geneticist could have shared statistics or the latest research to answer our questions. Instead, he gave us deep insight into how to parent our new baby. Calmly meeting our eyes, he spoke tender words of profound truth. “You’ll just have to get to know David to find out who he is.”
It was impossible to say what David’s life would look like. Even if we had a typical child, no one could tell us how intelligent, creative, determined, or successful he might be. The geneticist’s advice was to love our son just the way he was, right at that moment.
After our conversation with the geneticist, Steve and I had some clarity. We asked each other if we were willing to love David as he was—with his disability, his small hand, his unknown future. In this moment, right now, do we love him? Yes, of course we do! It was simple and profound at the same time. Our conversation with the geneticist changed our perspective and gave us clarity. All we needed to do was get to know David right now, in that very moment. We didn’t have to have everything figured out.
We weren’t in control of the events leading up to David’s birth. And we had no idea what the future held. But as we sat with the geneticist, we were given the best, most important advice any parent can receive—the most important advice any person can receive: Love. Love him just the way he is.
Something within me exhaled. We already had the one thing we needed most—love. I didn’t know it yet, but our little David was going to teach us a new kind of love—a deeper and fuller love—and a brighter hope than we had ever experienced.
When Lisa Leonard said her marriage vows, she was determined to be the best wife she could be. When her first son was born with a severe disability, Lisa promised herself she would always be the mother he needed. When she began her jewelry business, Lisa committed to giving it her all.
Over the years, the exhaustion of trying to be the perfect wife, mother, and businesswoman took its toll. Lisa knew it wasn’t working. She wanted to change things, but how? Everyone depended on her. So she kept going, kept pushing, kept trying to prove she could do it all.
Until one evening, in tears and desperation, Lisa realized that she could no longer be everything to everyone. Somewhere along the way, she had lost herself.
In Brave Love, Lisa shares her story of finding truth and wholeness in the midst of life’s competing demands. Brave Love is about what it means to be human, how it feels to be broken and afraid, and what happens when we dare to love deeply. Join Lisa on a journey where you will discover you are worthy and lovable just as you are. You don’t have to try harder or be better. You don’t have to prove yourself and you don’t have to make others okay. In this freedom you will find more peace and more joy. Most importantly, you will learn that as you stop trying to be everything to everyone, you will love others better.
Lisa Leonard is the founder of and designer for Lisa Leonard Designs. With Lisa’s creativity and her husband Steve’s vision, together they turned her hobby into a multi-million dollar company. Today they employ more than 150 people in three countries reaching around the world. Lisa is a popular jewelry designer, blogger and speaker, sharing her story around the country. Lisa and Steve partner with non-profit organizations and ministries to protect the vulnerable and serve those in need. Lisa, Steve, and their sons David and Matthias live on the Central Coast of California. They love slow mornings, good coffee, chocolate chip pancakes, and adventure. Lisa’s favorite things are treasure hunting at local thrift stores, dabbling in photography, and having heart-to-heart conversations over coffee.