A journey of hope – Part II
Only few can say what it feels like working with children who are so extraordinary, they sometimes seem like unfamiliar beings. It’s a diminishing feeling of sorrow that parents have, which then tilts towards fear. When a child comes in as a new patient, I almost inevitably feel as though I belong to that family, to the story written into the plot lines from then onwards.
The place feels like it is my own because I love it like it belongs to me. I’ll do anything it takes sometimes, even if it means making hard decisions, often working past my nine-to-five schedule. I feel like it’s a coveted and gracious duty which has been bestowed on to me. As a mother to a very tender-hearted seven-year-old who has taught me more than I could ever teach her, that is how a mother loves. As parents, we fiercely protect and keep sacred everything that has been entrusted to us.
It’s quite a phenomenon if you think about it. The rowdiness of the children in the reception area that discombobulates your senses as you try to answer a call or schedule the next appointment, only to be laughed at in conversation because you can’t tell whether it morning or afternoon. The sound of the same nursery rhyme playing on repeat or of a kid having a meltdown because the sound of the ambulance siren, which passes by regularly, is too loud.
Then it gets really quiet. I’ve come to know that because report consultations are scheduled towards the end of the day, the significance of that stark contrast still shakes me to my core.
The parents have much to process. What is the child’s diagnosis? Where do they fall on the autism spectrum? Will they ever say the word, ‘mommy’, or ‘daddy’? Will they ever get through school, or will they just be OK? What will life look like from now on, now that they know life will never be the same, knowing what they now know.
I sit quietly passing the time processing paperwork and clients while the doctor combs through details of each assessment with the parents. Breaking down the analysis of T-score and percentile and just-above-average development. Parents who have been told that their child needs ‘fixing’, or that society won’t see them as ‘normal’, have been hurt to the core. As parents, we want to feel that we did everything we could have possibly done within our biological and physiological control to determine the successful outcome of our children.
Twenty-five years of experience would have you thinking that this is something she’s grown accustomed to, that the delivery would be mechanical, but somehow, this decent human being, for whom I have the utmost respect, develops a unique rapport with each family. Her care and empathy when delivering news of such profound nature becomes the source of comfort and stability on which they can reply.
So I comfort as much as I can, and encourage them in their new mission while scheduling follow-up consultations.
And then, after a few months have passed, time has healed and now the parents seem to have on their new and shiny armours. Through confusion and pain, they have chosen to be courageous. Their love and determination keeps them pushing forward towards a belief of new beginnings, toward a spectrum of hope.
Danielle R. Neil is a project manager at One of A Kind Kids Ja, an integrated programme for children with special needs.