What the Unknowns of Our Special Needs Journey Teach Us About Love
Yesterday, we went shopping for organic food to make Chiara’s meals. We jam pack as many nutrients into each of her meals to help feed her brain and body. And when I look into her crystal clear eyes, I know it’s all worth it.
On our drive in, I asked my husband, Mauro, what he thought the future held for Chiara. We do so many daily tasks for her that it’s hard not to wonder if we’ll be doing them forever. We seldom talk about this side of the journey; it’s our elephant in the room. Usually, Mauro’s response is full of certainty: “Yes, she will achieve absolutely everything.” But this time, he wasn’t as sure. With quadriparetic cerebral palsy, microcephaly and an extremely rare neurological disorder called polymicrogyria, the odds are well stacked up against her.
We don’t know if she’ll ever walk, crawl, sit or stand. We don’t know if she’ll ever utter a word, and we don’t know as to what level of understanding she’ll gain. We don’t know if she will be able to go the toilet, feed herself, marry, have children or travel. We don’t know if she’ll get the chance to live a long life. Her brain injury is just as complex as life’s big mysteries. I have pleaded with the universe many times to give us one — at least one certainty — but to no avail.
It’s so bizarre to have a child with so many unknowns. Of course, most of life is full of unknowns. However, when you’re raising a child, you can usually guarantee that the milestones of crawling, sitting, walking and talking will occur, as well as subsequent learning activities throughout school.
The unknown is a familiar space in our world and in so many others. I guess it’s up to us on how we handle the daily unknowns. We can feel the devastation or we can embrace this great big mystery with lightness and ease. No doubt we’ll swing in between both (from time to time), but most importantly, we’re learning to love through the endless unknowns.
I used to so desperately want Chiara to walk, but these days my number one wish for her is that she is surrounded by love. Not an easy task for two chronically sleep deprived parents who are worried about their child’s health and trying to manage the sometimes cruel symptoms that come along with a multitude of diagnoses. So achieving this through the chaos is a mini-miracle. It’s all about love.
If I could offer some advice to a special needs mama, it would be to simply love. Love beyond yourself. It has the power to carry you through the darkest of days. As the author Louise Hay would say, “Life loves you.” Bless her! Although I did question her affirmation over the past two testing years.
I believe life is teaching us both to love fiercely beyond ourselves and to trust that the divine is taking care of everything. It’s not to say we aren’t going to give it our all to help Chiara reach her highest potential physically, physiologically and intellectually. But we’re not always steering this ship, so we have to learn to let go.
And for all the perceived losses that come with the special needs journey, there is a one huge gain growing beyond our wildest dreams. And that is simply love.
Follow this journey at Chiara’s Journey.
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