Their Name Is Today

Their Name Is Today is not another sweet, avuncular parenting book. It’s not a gloomy list of statistics either. Working with children and families for four decades, author Johann Christoph Arnold has often been confronted with the suffering of the youngest members of society, Sometimes they suffer from the effects of having too little, sometimes from having too much. Often they struggle as they wait for help and guidance that, if it comes at all, comes too late. Other times, they deal with directives and dictates that hustle them along too quickly. But Arnold will not let any of us use resignation or overwhelm as an excuse for giving up. There is hope, he insists, and here is how we can get there. 

Perhaps because my brother Duane is never far from my heart, (for 31 years, he lived a full and beautiful life with major disabilities,) Arnold’s chapter about reverence for the spirit of childhood had me in tears. Not tears of sorrow, but of affirmation. He wrote about his sister Marianne, who only lived for a day:

“Because I was only six, I was never able to see, touch, or hold my little sister. Still, I have felt this loss my entire life. Over time, it has become all the more important to me to remember that Marianne was – and is – a real part of my life and my family. Though she was here on this earth for only one day, she will always be my sister.”

His next story speaks to all who experience disability and suffering:

“My granddaughter Stephanie Jean will remain in my heart for the rest of my life. When Stephanie was born, we knew right away that she was a very special child with severe abnormalities. She was diagnosed with Trisomy 13, a genetic disorder with a short life expectancy. Most infants born with this disorder die within a few days.

Stephanie had three sisters and one brother. They struggled to understand that their parents were not going to bring home the healthy baby they all had longed for, but an extremely disabled child who would not live long. We prayed constantly that God’s will would be done in her life, and that we would grasp the meaning of her birth.

As grandparents, we experienced the wonder of holding her almost daily. Stephanie lived for five weeks, and when the time came, died peacefully. At her funeral, we could not believe how many people attended. They had all heard of her birth and diagnosis, and it affected them deeply. They wanted to participate in this last expression of love for a small child who somehow belonged to everyone.

People came from all over the neighborhood and beyond: construction workers, her siblings’ teachers and classmates, the county executive, the local sheriff, and others from the law enforcement community. When the earth was shoveled by hand into her little grave, these friends and neighbors all wanted to take a turn, in an unforgettable gesture of reverence. It was remarkable how in such a short time, this little girl had touched and influenced the lives of so many people.

My granddaughter has not been forgotten. She is like a ray of light from heaven that continues to work in people and change their lives. My wife and I still thank God that he gave her to our family, and to everyone else she met.

To me, every child is part of God’s plan, and he does not make mistakes. When a child is disabled, her life takes on special significance. Whenever we encounter such children, we need to pay attention. They have amazing things to teach us about unconditional trust and love.

At a time when people are often assessed in terms of their worth, intelligence, or attractiveness, there are many who are not wanted or appreciated. But if we truly love children, we will welcome them all. As Jesus says, “Whoever welcomes one such child in my name welcomes me.”

Their Name Is Today showed me just how connected are so many facets of living that till now have been occupying separate rooms in my heart: teaching, disabilities, motherhood, work, play, defying the status quo, making snow angels, taking life in all its raw, beautiful, exhausting, exhilarating truth. Read it, treasure it. Then share it with someone else.