Held
De realiteit van Rachel en Janneke’s handicap – en mijn eigen menselijke zwakheid – is duidelijk in hun meer intieme dagelijkse momenten, zoals baden, aankleden of veranderen.
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.
As a mom to two medically-fragile daughters and two neurotypical daughters, I am aware of what is projected as ideal developmental milestones. I’m also aware that when we view disability only through the lens of a medical model, we see disability as a problem that doesn’t meet milestones and has a preconceived trajectory requiring treatment. The disability needs to be fixed.
All of these experiences serve to remind me our anticipation is limited by our human inability to know all and see all. We anticipate what we know. We anticipate what we think we need. We anticipate what we wish.
I suppose my wonderment is one of the biggest reasons I am determined to take them outside as often as possible for walks on trails or the neighbourhood sidewalks.
As an adult, I probably spend more time asking and less time thanking, frustrated over the things or circumstances I’ve received but don’t appreciate.
I am reminded slowing down isn’t always terrible. The quiet silence in that slow moment can be quite beautiful.
How do you address my girls, particularly if they don’t have direct eye gaze?
However you choose to celebrate Canada’s 150th – with a cake parade, fireworks, or a camping trip – look for the stories.
For me, May inspires more of a creeping melancholia alongside the mirth. May brings Mother’s Day and Rachel’s birthday (May 4), and though both days are wonderful, they are also bittersweet.
The unlikeliest types tend to be great helpmates for our family. More than once, I have received help from someone who I wouldn’t think to ask.
The history of institutional care in Canada is complex, and it is now, thankfully, a new story of better hospitals, community group homes and advocates who work tirelessly for equity and dignity in living together.
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