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Challenge: NICU Parenting

The Strength of a Village

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Our son, Christopher Jude Grau, fought every day of his 111-day life in the Level 3 NICU at St. Vincent Women’s Hospital in Indianapolis.

He was 1 lb. 13 oz. and 13.5 inches when he was born at almost 32 weeks. We named him Christopher Jude because in the Catholic faith, saint names hold a good deal of meaning. Saint Christopher is the saint of strength and St. Jude is who you turn to for lost causes. “Lost cause” makes me cringe, but we viewed it as a hopeful name, handing him to God to make hole.

Throughout my pregnancy, after our 19-week ultrasound, my doctors kept telling me to “enjoy my pregnancy” because they didn’t believe that we would be able to meet our unborn son. Brain, heart, liver, severe growth restriction – it felt like every appointment (and there were A LOT of them) revealed a new strike against Christopher’s opportunity for life. We knew that we needed the “big guns” watching out for him.

Our sweet boy was strong – so strong. In his short life, he endured two heart surgeries and three additional surgeries. He was transported by ambulance twice to other hospitals for specialized treatment. (Do you know how they transport babies on ventilators? Basically in a high-tech, extremely expensive, clear pizza box. It’s horrifying.) He endured countless tests and even more attempts at IVs. His faint, high-pitched cry strengthened during his life. Sometimes he’d sleep through the tests, other times we’d hear his little wail, and our hearts would break over and over again.

After Christopher died, I spent a lot of time journaling. It was less about my feelings and more about a desire to write down everything about him so we wouldn’t forget a thing.

His delicate hands that loved to touch. When we weren’t holding his hand, we’d find him with his tiny hands clasped or gripping a piece of fabric, even gently stroking it. The moment that he first reached up and placed his hand on me when I held him, I thought for sure that my heart would melt right then.

He gazed so intensely, right into our eyes when we held him or were by his bedside. His connection was pure and strong.

His fuzzy red hair continued to grow even when his eyelashes never did. And his rounded little eyebrows, so faint, but a perfectly raised arch when he wasn’t sure what was happening around him.

As much as I remember about our sweet son, Christopher, I remember the people and relationships that he brought to our life. Our time in the NICU was lonely – it’s a scary place when your child is as sick as Christopher was. But we were never alone. Family and friends carried us. They picked up our daughter from school, fed us, stopped by the hospital when we needed a hug (or coffee), and prayed endlessly for our family. They cried with us as we prepared for his funeral, and they sat with us when we struggled to move forward.

His death and funeral were the saddest days of my life. The doctors warned us that they were coming, but the actuality of them was awful. His nurses came in from out of town to say “good bye.” Our friends and family surrounded us and supported us. A photographer took sorrowful photos of our family – the only ones of the four of us – to preserve our memories.

The night before his funeral, long-time friends came over and lovingly created boards of all of our photos of Christopher. It’s difficult to show up for others like that – when despair is so deep that nothing will make it feel better. It takes people who are so full of love and compassion that they forget their own discomfort and show up anyway. The funeral mass was the same way. Full of people who knew how hard it would be, but showed up anyway. It was an outpouring of human compassion. We felt loved and love for our Christopher.

Christopher showed us that when God gives you more than you can handle, he also delivers a village to help you carry it. Every day, we wish he was here with us – and every day we’re reminding of the strength and love that he opened up for us – and we’re grateful to and for him.

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