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Sculpture: The artist is Roely Aalbers Moes.

“Comfort, comfort, ye my people . . . . Every valley shall be exalted, and every mountain and hill shall be made low: and the crooked shall be made straight, and the rough places plain.”
 – the prophet Isaiah

The reality of Rachel and Janneke’s disability – and my own human frailty – is evident in their more intimate daily moments, such as bathing, dressing or changing. Each morning, I start the girls’ day by washing them up and dressing them for their day. As I clean their faces and massage their legs and arms, I am reminded of how unique their bodies are. The scoliosis in their spines continues to aggravate their growth and development, and as I work their hands in their sleeves and their feet into socks, I wonder about the toll of the atypical development on their bodies.

I also worry about the toll of Rachel and Janneke’s care on Ralph and me. Our bodies are affected by the way we carry and move with the girls. Refining our posture, finding rest and building physical strength are important as we grow older with our girls.

Posture of love
Last summer, as part of finding rest, Ralph and I visited Ralph’s aunt and uncle, Roely and Wim, in Zwolle, Netherlands. Tante Roely is an artist with a wonderful ability to create incredible physical impressions out of rock. Often, family memories inspire her pieces. One sculpture in particular caught my attention. It was of an adult and child; the adult is kneeling and leaning over the child, preparing to lift.

As I held the piece in my hands, I thought of the different stories this piece was telling. I was surprised at how this sculpture brought so many pictures and emotions to mind. The posture in her sculpted piece illustrated immense love and compassion – and incredible vulnerability.

I asked Roely to tell me more. As we talked through the piece in our best English and Dutch, she explained the sculpture was of her son Frank and her granddaughter Carmen. Carmen has exceptional needs, similar to Rachel and Janneke, as a result of metabolic concerns. Though discouraged at times by the reality of her loved ones’ needs, there was much love evident in her sharing about her children and grandchildren.

Posture of spirit
I now have a picture of that sculpted piece in my home office, reminding me of two important things. First, I am comforted that one day, our Creator God will bring relief; the crooked will be straight. Second, I have used that picture to influence my posture of my spirit in difficult circumstances or with difficult people.

Caring full-time for completely dependent loved ones wears on the body and the soul. Whether it is providing the needs and support for a child or a loved one who has dementia, there is significant physical and emotional impact for the caregiver and the one receiving care. Sometimes that impact can lead to a posture of tension rather than tenderness.

Posture of grace
I cannot alter the position of my children being disabled, but I can continue to refine my posture of care towards them. At the same time, is not this also the way we ought to live as the Body of Christ? How often do we try to change the position of someone else before considering our posture towards them? Perhaps there is more room for compassion, grace and love when we work on our posture rather than the position. This posture comes with risk; it will make us vulnerable to hurt and sorrow, but it is the mark of living in true community.  

Canadian writer Jean Vanier says, “Communion is the to-and-fro of love. It is the trust that bonds us together, children with their parents, a sick person with a nurse, a child with a teacher, a husband with a wife, friends together, people with a common task. It is the trust that comes from the intuitive knowledge that we are safe in the hands of another and that we can be open and vulnerable, one to another.”

One day, we who are this crooked body, this sometimes complicated body that tries to live out Christ’s love, will be made new. Take comfort.  

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About the Author
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Sara Pot

Sara and her husband Ralph have four girls: Emily, Sophia, Rachel and Janneke. The extra needs Rachel and Janneke present being severely disabled have created a new normal for the whole family. Much thanks and love to Frank, Isolde, Zeno and Carmen for inspiring this article.