My best advice for new parents of EA/TEF babies has had plenty of time to percolate. It’s been brewing since 1982 when our first child received his diagnosis 12 hours after his birth. Until our son’s health stabilized, my husband and I longed to meet other EA/TEF parents and pick their brains. But we didn’t meet any other parents raising kids with the same diagnosis until 25 years later. By then, our baby was a young adult himself, and we were sharing what we’d learned with parents of newborns.

EA/TEF treatment has advanced exponentially in the intervening years, so what my husband and I had to offer in that arena is laughable and outdated.

But with age, I am increasingly finding to be true, comes wisdom. As I pondered my best advice for new parents of EA/TEF babies, one thought kept rising to the surface of my thoughts.

Relish every day, every minute, every second with your child.

Remember, I am speaking from long years of experience. Years when a host of concerns for our son set my mind to spinning…

What if this surgery doesn’t work?
What if our insurance doesn’t come through?
What if the doctors discover more anomalies or conditions?
What if I can’t pump enough breast milk?
Why would God do this to my child?
What if our baby won’t sleep tonight and I’m exhausted before school even starts?
What if we have to care for our son the rest of our lives?

What if?
What if?
What if?

And the biggest what if of all…What if our baby dies?

My preoccupation with what ifs about the future robbed me of relishing the present joys of his life…

of breathing in his sweet baby smell
of watching him sleep
of recording his milestones
of delighting in his smile
of counting each day of being his mommy as a precious treasure
of gratitude for the child God gave us

Had my baby died, my grief would have been compounded by regret for my lack of presence in our son’s life. My memories of his short life would have been tainted by worry. My memories of being a parent would have been wracked by guilt.

I lost much by looking too far ahead when I could have been enjoying the present. Those moments are lost forever, but they are not lost to you. So my best advice for new parents raising babies with EA/TEF is simple…

Relish every day, every minute, every second if your child’s life. 

However long or short your child’s time on earth may be, you will never regret it.

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