A young mom posted online today.
She had just learned that their newborn child was born with complex medical issues which included epilepsy, cerebral palsy, and possible development delays. All the things we were familiar with.
She wanted to know how children in similar situations were doing today.
My first reaction was how amazingly strong was this mom … to have the wherewithal (you just don’t get to use that word often enough ) AND the energy to post about this devastating, personal discovery.
Not only that but to also look for help right off the bat.
Within seconds, all the feelings and emotions from Ben’s birth 26 years ago became fresh again – things like being told he may not live the day and would likely never walk, talk or go to school.
It’s quite remarkable how these feelings can be resurrected so easily. How they never really go away.
I began remembering what it was like to be back in PICU (paediatric intensive care unit) during that first horrible week after Ben was born. How, after 7 days, we were ready to leave that wretched place.
At the time, we had asked one of the neonatologists about bringing Ben home, and he agreed that we’d likely all do better in the familiar surroundings of our home
But we were torn. What if Ben started having seizures at home? What would we do?
Would we even recognize a seizure?
What if he didn’t eat for us?
Our “experience” as parents of two toddlers meant nothing.
This specialist sensed our anxiety and uncertainty and gave us the best advice anyone has ever given.
He simply told us to forget everything. All the medical issues. The follow-up appointments. The dire predictions.
Not to worry about any of that.
He told us to just take Ben home and love him! As new parents again, that’s all we should focus on.
Those words were an instant cure for our nervousness. That we could do this.
He was our child. We didn’t need to be afraid of him, or afraid of what might happen.
Just carry on. Love him. Start there.
So, that’s what I told this mom. I said that it’s impossible to absorb everything in the beginning.
There’s too much of it. It’s overwhelming. A lot of it is just noise, too.
I told her exactly what the neonatologist told us – to just take her son home and love him. That was the most important thing to do and where it all starts.
To not rush things. To not try to fix things right now.
What this neonatologist was teaching us in those early days was the practice of keeping things simple because nothing in Ben’s world could be classified as simple.
He helped us to be present, in the moment, and notice the good in what we had. This in the face of all the negative messages we had received.
And he was right.
It’s not easy to block out everything and not feel anxious of when the next crisis will show up.
But it is a tried and true approach to overcoming stress and reducing those feelings of overwhelm.
It allows you to cut through the noise, fear and negativity and to see glimpses of hope.
So remember to just breathe.
Calm your raging mind.
Still your heart. And be present!
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