Being Ben: Parenting after Stroke

Fate whispers to the warrior, “You cannot withstand the storm.”

The warrior whispers back, “I am the storm.”- unk.

I never thought about how the brain worked much.  The effort it takes to toss a ball between your hands.  Or reach across your body to grab at something.  I never considered all the pieces that must connect inside one’s mind to breathe, or talk, or take your first steps.

Until my newborn had a stroke.

When the unspoken promise of all of life’s milestones is suddenly a question, you begin to think about things in a different light.  It’s a surreal thing as a parent to experience any sort of trauma with your child, and hearing the word stroke completely took me aback.

Being a parent to a tiny warrior changes you.  You learn to appreciate the small things in life.  We celebrate birthdays, half birthdays- even a random Wednesday if we get the request.  We embrace the challenges and the differences between our sons, slight as they may be.  We take joy in every milestone and know that life is not something to be taken for granted.

Today, Ben is 15 months old.  He is thriving and is a force to be reckoned with.  His stroke is never far from my mind as he is at higher risk for a repeat, but I’ve had to (try to!) learn to step back and let him just be.

If I can share some words of wisdom to a parent just entering this journey, it would be this:  Trust in your medical team, but take their cautionary words as if they’re written in sand, not stone.  A baby’s brain is an incredible thing that is just beginning and can rewire itself in miraculous ways.  It’s ok to be afraid, but do not live in fear.  Your child will still do amazing things- it just may be along a different path than expected.

Need support?  Here are some groups I have found helpful.  https://www.facebook.com/groups/KISSPediatricStrokeSupport/

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