Happy New Year to our readers! This column contains reflections from my days as mom and primary caregiver to the four girls I share with my husband Ralph. Our older daughters, Emily and Sophia, are more than capable of sharing their stories, and we look forward to hearing them some day. In the meantime, I’ve chosen to focus on Rachel and Janneke in these writings.
Rhythm in routine
Weekday mornings start early at our house, as we prepare to send Rachel and Janneke to school. Bed baths, preparing the formula and feed pumps for the school day, clipping 15-20 bibs to each wheelchair to help with saliva management, and packing several syringes (not needles) with water for their recess refreshment are all part of that morning routine. Over time, according to the girls’ growth and development, we’ve developed a rhythm in this routine that can be (almost) set to time.
That rhythm was affected recently by the addition of Janneke’s torso brace. Both Rachel and Janneke have severe scoliosis, and their curvatures are not improving. For Rachel, the curve in her spine is in the lower half of her back, so we’ve supported her spine with a custom-made wheelchair. The back and base of the seat in the chair has been uniquely designed to allow for her to sit comfortably – without aggravating or accelerating the curve. This suits Rachel, as she doesn’t enjoy moving much in her chair or being transferred to different positions.
Janneke is our “busy” one. Though she doesn’t bear weight independently, she loves to move around the school in her walker, and she is more likely to shift in her chair to find creative ways to sit. The curve in her spine is quite pronounced in her upper back; her spine protrudes out, hunching her back on the left side. As this develops, we wonder about the impact internally with her lungs and breathing. With the advice of our orthotist and paediatric orthopaedic surgeon, we obtained a torso brace for her to use, whether she is in her walker or in her wheelchair.
The joy of being confined
To simplify matters, think of Janneke’s torso brace as a plastic corset – with butterflies. Yep, it’s a cute but tight fit. Now in our morning routine, as I dress Janneke, I fit a tight but soft undershirt over her head, and then add the brace. This brace fits snug under her arms, curves in at her hips, and flares out over her thighs. It has taken some getting used to – but not for Janneke. It has been more complicated for her mother and caregivers to learn a new routine of wrestling the rigid hug around our girl, yet Janneke seems quite thrilled with being hemmed in.
Though I might lament the changes in our girls and the new things we have to do to support them, Janneke’s grin only widens as I fit her in the brace – and that is the grace that encourages me. One of my favourite writers is Anne Lamott. I recently picked up an older book of hers, Small Victories: Spotting Improbable Moments of Grace (2014). I appreciate the challenge of learning to spot those unexpected gifts of grace, so I’ve formed one resolution for this new year. In 2020, I will keep my eyes, heart and mind open as much as possible in the hopes of spotting those improbable moments of grace. I hope the same for you.
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