Within each one of us lurks the need to belong. We are inherently social beings and this implies the need to communicate and grow community while we interact with people. We hone these skills from birth, from the time that our parents encourage us to say “Mama” and “Dada” and praise us when we do. We are lavished with love as we fulfil their need for us to claim them as our mom and dad. And there it is: programmed from birth to please people we know (and don’t know), receive love, and give love in return. A sure-fired recipe to share the warm fuzzies of knowing that we are seen, are appreciated, have a cherished place in a group. Belong.
And what happens when this ‘normal’ transition is interrupted for some reason? What if a child doesn’t meet the usual developmental milestones, doesn’t respond to a parent’s voice, can’t move to reach for a mother’s hand, is unable to see a father’s smile? Often, as parents, we doubt ourselves, become totally reliant on medical professionals to guide our actions and map out a life of activities to ‘fix’ the things that are missing in our child’s response. And the doubt and questioning of ourselves and others begins: Why my child? What did I do wrong? Why did I not see this sooner? Is it my fault? Surely the doctor should have picked this up?
Guilt. Blame. Introspection. Lashing out. Some may say that parents enter the stages of grief at the ‘loss’ of their dreams of a normatively able child: Denial; Anger; Bargaining; Depression; Acceptance. When you’re in the middle of raising a differently-abled child (along with a normatively-abled child) it’s so hectic that you don’t have time to psycho-analyse your own behaviour and responses. And I reckon that’s a good thing.
Looking at these stages of grief I can’t remember ever feeling Anger or Bargaining. I never asked “Why us?” or “Why Chaeli?” and I certainly never railed against God or bargained for Chaeli to be different. Of course I was the Denial Queen, thinking for the longest time that Chaeli would be able to walk independently. And then she didn’t. And it was OK.
From early days I was very focused on affirming all that Chaeli could do and not dwell on her needing support to sit, walk and eat. Even though she spoke softly and sometimes didn’t say words with B, P and M (all words that needed lip closure) perfectly, I delighted in the fact that her vocabulary was huge and she spoke with the wisdom of a tiny oracle. And those small black, plastic scooters that every toddler loves? I was amped that she could sit on her shiny black steed and maintain her balance. Why would I fuss about the fact that she could not propel herself forward – she could get everywhere by reversing, after all! Her body was different and had limited capacity to change. What needed to change was me. And her dad. And her sister. And her friends.
In order for Chaeli to have a family and group of friends where she felt that she belonged and was accepted, she presented to us a gift to grow and change our worlds in order to better understand hers. And this resulted not only in Chaeli fitting into our world, but also each one of us growing skills, knowledge and empathy to fit into numerous other worlds.
We needed to adapt and grow, just as she was learning to adapt, survive and thrive in a world that does not fully cater to her uniqueness. Lucky us. Thank you, Chaeli, for enriching us in unimaginable ways. For inviting us into your world. For showing us that you are not broken and don’t need fixing. That we are capable of being so much more than we think we can be. For seeing difference as something positive. And for learning that ability comes in various shapes and forms – many of them determined by attitude and opportunity.
And therein lies the lesson: We all belong if we respect uniqueness and are open to doing things differently with one another. Learn. Grow. Do.