elephant in the room
Yesterday we did our organic food shop, it always astounds me the amount of food we go through in a week, but then again each of Chiara’s meals is jam-packed with as many nutrients as possible to help feed her brain and body. We rotate the food she eats daily and when I look into her crystal clear eyes, I know it’s all worth it.
On our drive in I asked my husband what he thought the future held for Chiara. There are so many daily tasks that we do for her, due to her disability that it’s hard not to wonder if we will be doing them forever. We seldom talk about this side of the journey; it’s our elephant in the room that lives with us most days. Mauro’s usual response is with full certainty that yes, she will achieve absolutely everything, however this time he wasn’t as sure. We have a beautiful little two-year-old full of complete mystery.
We don’t know if she will ever walk, then again we don’t know if she will ever crawl, or sit. We don’t know if she will ever utter a word and we don’t know as to what level of understanding she will gain. We don’t know if she will be able to go the toilet, feed herself, marry, have children, travel. We don’t know if she will 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 at least give us one, give us one certainty, but to no avail.
It is so bizarre to have a child with so many unknowns, of course most of life is full of unknowns, however when rearing a child we can almost guarantee that milestones of crawling, sitting, walking, talking will occur, as well as subsequent learning activities through school and sports etc
The unknown is a familiar space in our world and equally in so many others. I guess it’s up to us what we wish to do with the daily unknowns. We can feel the devastation and feel disempowered, 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 are learning to love through the endless unknowns.
I used to so desperately want Chiara to walk, full stop, but these days my number one wish for her, is that she is surrounded by love. Not an easy task for two parents who are chronically sleep deprived, worried for their child’s health and wellbeing, finances and hospital visits. So achieving this through the chaos is a mini miracle, it’s all about love.
If I could give any advice to a special needs mama, it would be to simply love. Love beyond yourself. As Louise Hay would say ‘Life loves you’ – bless her! I have questioned her affirmation though over the past two years 😉
Life is teaching us both to love fiercely beyond ourselves, 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 her achieve 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 loss’s that come with the special needs journey, there is a one huge gain that is growing beyond our wildest dreams…
…and that is simply LOVE.
Categories: Cerebral Palsy