By: Eric Brown
Quality of life… What a phrase! Seems like we hear it a lot in the HoPE community. Sometimes it’s from doctors during that 20-week ultrasound, as they unpack what the future may likely hold. Or maybe it’s shortly after delivery, when facts are finally being gathered and a diagnosis is given a proper name. Sometimes it’s from friends or family, trying their best to phrase their inquiries as inoffensively as possible, while still driving at their point… That point being that they don’t understand what we as parents understand. That they don’t necessarily see what we see, which is extreme beauty, purpose, and honor in the midst of a life we never thought our families headed for.
And as innocent as those questions can be at times, I think often times the point is missed. Does Pearl have a great quality of life
when “quality of life” is defined in the way usually meant by these people? Nope. In that sense, her quality of life sucks. It’s awful. As is the case with many who deal with HPE, Pearl’s life is wrought with seizures, fevers, breathing troubles, and an overall frustration with her brain and her body. She’s in and out of the hospital, doctors’ offices, therapy visits, etc., and most of her life is spent struggling to survive the hour that’s before her.
But that’s not all that her life is about. Sure, if you’re living with HPE, that means that you’re likely encountering a disproportionate amount of suffering when compared to those around you. But our lives aren’t just about us. Lives are meant to be communal and shared. No man is an island, as the saying goes. And we can all attest to the fact that our children have a tremendous impact on those around them.
We all hear the same sentiments… Strangers and loved ones come up at random times to share what they’ve learned and how they’re being changed just by being in the presence of our children. We can attest too, to the fact that our children are changing us. Our perspectives shift in subtle and dramatic ways. The value we learn to place on suffering and on difficult seasons increases. We even sometimes find ourselves standing upright, though not without support, amongst seasons we never thought we’d be able to withstand.
So when “quality of life” is defined as living an un-wasted life… a life of meaning… a life of quality, I think HPE is a golden ticket… a solid inroad to that life. It leads to a life of quality. I suspect a life of ease and comfort, of dream fulfillment, and of empire building is more suspect of lacking in quality than the lives of these kids who do very little, other than abide. And we can take heart too, as parents who lay our lives down to sustain and care for these kids. We can take heart that our lives aren’t wasted either. By default, the quality of the lives we’re living is also rich and counting for a heck of a lot. Yet another gift our children give us!
“The pleasure in suffering is that you feel you are getting beneath the superficial and approaching the fundamental.”