Happy New Year. Did it seem a little anticlimactic to have New Year’s Eve on a Monday? Being a creature of habit, when a holiday happens in the week, I find myself losing track of the days afterward. However you see the days sorted, here’s to the new year, new memories and more experiences in this wilderness of life. Prost! (Cheers!)
Ah, Christmas time. For some of us, it is a time of entertaining and welcoming family and friends. When I was much younger, Christmas time meant traveling to see family, receiving chocolate letters and new socks, and being together while the cooked turkey smells pervaded the home – or the fresh smells of Kentucky Fried Chicken that told us dinner had arrived.
Shortly after the birth of our third daughter Rachel, the work began to determine her needs. Prior to Rachel’s birth, we were given a list of all the possible concerns, as a way of preparing us for our eventual reality. I remember wanting to dismiss the list and imagine that all of the worry was one big medical error. Soon after Rachel was born, it was clear that all was not well, and if there was any error, it was my underestimating how very quickly life can become complicate
Following last month’s column, I am thankful to share that Janneke’s first four weeks with her new school, Beacon Christian, have gone well. She has embraced the change in her own way, feet shaking out their morning happy dance in her wheelchair on our walk to school and new sounds coming from her lips, no doubt influenced by the classroom chatter of her typically developing peers.
I am trusting that the next step for Janneke at Beacon Christian will be a good fit. Though I can only guess at what she might be thinking and processing, I know she knew Niagara Children’s Centre School to be a safe place where she belonged. She loved exploring the school in her walker, and she had many schoolmates call out her name in the hallway every day.
Wherever your summer plans take you, may they take you places where you can catch a glimpse of the Body, reminding you to see the least, the lost and the lonely.
Before Rachel and Janneke were born, my own experience with drooling was limited to my two older neurotypical daughters when they were infants and teething. I thought of it simply a phase they left behind, as they grew older.
Whether it’s curiosity, ignorance, skepticism or genuine interest, my hope is that we can set aside that must-know and learn to be content with some uncertainty. Learning to see possibilities instead of just the problems allows us to offer hope and encouragement to those who sit on the periphery of what the rest of us have perceived as normal.
One of reasons I am motivated to write about my daughters and their disability is the desire to give colour and depth to what otherwise seems like a charcoal sketch of their reality.
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.