I received an email the other day from an acquaintance of mine.Her correspondence contained both a question and a request.She asked whether it was cerebral palsy our son had and if so, would my wife be willing to speak with the mother of a child in their neighborhood who had just been similarly diagnosed?
Though my wife was the woman of the hour, it caused me to wonder what I would offer if the opportunity were to have been presented to me?What do you say to a parent reeling from the shock of such news?
Our son is sixteen years old and it’s a long walk back down the corridor of time to his childhood and those early and emotional days surrounding the original diagnosis.There are aspects of it etched forever – especially the moment we received the diagnosis from the physician.And some still bring a lump – like when Kyle fell from my hands while I was trying to help him put a basketball through a hoop.
Fear not – the fall didn’t cause him any permanent damage, though it did bruise and break my heart.
In retrospect, I think I spent a lot of those early years in a haze or was it a rolling fog?I kept waiting for the clouds to clear and the sun to break through, which it did, of course, more often than not.But looking back, it’s difficult to fully capture my emotions and provide an accurate portrait of my heart in only a few words.The best way I know to describe my mental state back then is to reference the growth chart pediatricians use during annual check-ups.
Do you remember them?
Let’s say you take Junior for his physical and the doctor proceeds to weigh and measure the growing bundle.Suppose she tells you he’s in the 50th percentile.Not bad, eh?So you walk out of the office feeling pretty good.After all, you have an average child.By “average” I mean you’re encouraged that your child is following a path that children have followed for thousands of years.He’s normal – at least according to the official charts.
But when you receive the diagnosis of a disability, you’re suddenly off those traditional charts. Yes, other children may have had the same condition, but no two children are the same when it comes to quantifying and measuring the impact of a child with special needs.
The variables of a disability can be mind numbing.In many ways, you’re a pioneer, blazing and navigating an unpredictable trail.If you’re new to the challenge, you might feel like you’re immersed in a forest of information and maybe even having trouble seeing through the trees.
My wife and I were at a meeting some time ago and found ourselves sitting between two families.One had just received the news of their child’s impairment and the other was well over the decade mark of life taking care of a child with special needs.
The new parents seemed frazzled; the mom said she had just returned from a specialist who had filled her head with so information that she had to tell the doctor to stop at one point so she wouldn’t pass out.
The family with the teenager seemed to enter the room and very calmly set up their gear like old pros.In a flash, their child was comfortably situated and they quickly sat down for the meeting.What a contrast!
So what was the biggest difference between the two families? Time.
At the time of diagnosis, we think we need to know everything – but of course, you can never know what you don’t know.The information comes fast and furious, but it’s all facts and stats – important, but not personal to you.Only time will provided the answers to the question of how your child is going to actually live.Will it be a season of struggle or a lifetime of varying challenges outside the norm?What are the real obstacles for her or him?What about you?How will this change you – and your life?
She didn’t ask me, but I’d encourage my wife to tell her new friend to take a big deep breath and find some reliable sources of information.Find a qualified doctor with a good bedside manner.Find a friend.Be a friend.Try and take the long view and look beyond today.
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