The 'Wait and See' of Being a Parent to a Child With Health Challenges


Many parents find themselves in the place known as “wait and see.” Sometimes they’re in this place in a NICU when a baby was born too early and they are told to wait and see if she can sustain life outside the womb. Sometimes it’s after a baby has made it home from the hospital, but they’re waiting to see if he can achieve milestones like sitting or crawling. Wait and see if your child responds to this treatment. Wait and see the test results. Wait and see if the cancer comes back.

The wait-and-see place feels a little familiar: This is my family, this is my house, this is my life. But there’s a hazy fog everywhere I go, and it clouds my vision and my perspective. Was that a seizure? Is that normal? Everything I see indicates a problem. Everything is a symptom or a side effect.

It impairs my ability to see the future beyond this thing which we are trying to achieve. What is the next treatment if this one fails? How will we go on if our child does not survive?

It taints my memories of the past: Did I cause this? Should I have done something else instead? 

The fog in the wait-and-see bears weight. It is heavy on my shoulders and my heart. Hard to breathe, hard to sleep, hard to wake up. Hard to concentrate on what is before me and what is true. It is lonely and scary and lost to be in the fog.

Wait-and-see is a place on the map we did not expect to go and cannot avoid. But there is more to this place if we can learn to see through the fog: Wait and see the strength you didn’t know you have. Wait and see the miracles that occur when your child defies the odds. Wait and see how the world is inspired by what you’ve brought into it. Wait and see how love conquers all and the light that is love shines like a beacon in this dark place.

If you’re there, waiting to see — don’t let this time pass without also waiting to see what is good. Let love be your beacon through the fog, and let it lead you to the moments you would otherwise not see: the sweetness of your sleeping baby’s face, the strength that comes from those who are going through this with you, the hope that grows even in the dark.

Getty image by Pixelistanbul


Find this story helpful? Share it with someone you care about.


Related to Hypoxic Ischemic Encephalopathy

If You Could See What I See When I Look at My Child

If you could see what I see… You would see a little boy who is full of laughter, who is full of imagination, who is full of life and who is full of adventure. If you could see what I see… You would see a fighter, you would see a great friend, you would see [...]
Happy family in the park at sunset.

To the Parents Holding Their Breath for 'Milestones'

I’ve seen a lot of posts recently throughout many of the support forums I belong to about HIE, and about the amazing recoveries many children have from HIE. If that doesn’t happen to be you, know that your journey is a-OK too. There is immense joy, hope, and immeasurable love that comes from each part and each [...]
Teacher helping student.

How My Son's Brain Injury Helped Me Find a New, Rewarding Career

When my son, Max, was born over four years ago with hypoxic ischemic encephalopathy, my entire world shifted. Not only were we thrown into a complete tailspin of unknowns with his recovery from a brain injury, but I was a new mom… and I was a mom with a career. I had always known I [...]

When a Doctor Says ‘I’ve Never Seen This Before'

My daughter, Casey, was born in 2006. If she had been born even a year or two sooner, chances are she would not have survived her birth. If it had been three to five years sooner, chances are I would not have survived, either. Medicine is constantly advancing. This has put us in an interesting [...]