Fear Metamorphosis

“If we don’t put her to sleep we’re going to lose the baby.” Countered by the anesthesiologist: “I don’t know her blood pressure. I need a good pressure or I can’t put her under.” On the operating table about to have an emergency C-section, this was the last thing I heard before going to sleep.

I didn’t know if my baby would make it. I didn’t know if I would make it. Based on the conversation, it didn’t sound like either one of us would make it. Born at 26 weeks gestation, yes, three and a half months early, my son was born…lifeless. He was revived yet not expected to make it or survive long. It was 24 hours before I was somewhat healthy enough to be wheeled down to the NICU (neonatal intensive care unit) to see his little body.

Five months later, I finally took my sweet boy home. A train wreck on paper with a dismal prognosis, I was told to have no expectations, as he would be in a vegetative state. Regardless of what the doctors said, this was my child — bone of my bone, flesh of my flesh — and I would love him no less.

I was now charged to raise my greatest fear. The fear wasn’t about loving a child with a disability, it was how society treats people who are different and have disabilities.

Little did I know that my son would save and exponentially enrich my life. The friends that I have, the people that I’ve met, the opportunities and experiences I have had wouldn’t have happened if my son hadn’t been born facing the challenges he has.

It hasn’t been an easy journey, yet it’s been well worth it. I’ve learned to be, live, and love my authentic self. I’ve learned to live every day to the fullest and not sweat the small stuff. I’ve come to understand that it’s the inchstones that make up a milestone, and inchstones deserve the same cause for celebration.

I’m raising a young man who will most likely be fully dependent his entire life, and for that many pity me. Pity will get me nowhere, yet prayer, an attitude of gratitude, and the desire and will to live a full life are what have enabled my greatest fear to morph. It isn’t an easy life but it’s worth it. We’re comfortable with the uncomfortable, and although we might be different we’re not less. We are both accomplished endurance athletes. We travel near and far, creating astounding memories along the way.

Years ago I wrote a piece describing raising my greatest fear. Then in 2016, I wrote how that fear transformed into an uncanny type of joy, exemplifying agape love. You can read it below. Life doesn’t always turn out how we plan or even imagine; however, one can always find joy through the journey.

Metamorphosis of My Greatest Fear

My greatest fear acknowledged well before conception
Only to enter the parenting world via rude introduction.

A roller coaster of emotions from one end of the spectrum to the other
Arms and legs wrapped tight as I cling and smash against this violent pendulum called life.

My greatest fear realized and reluctantly accepted

It’s not you that I’ve feared yet the treatment you’d receive from others that would have me in tears.
The misunderstandings, the snickers, the deafening stares, the isolation, the potential abuse and uncontrollable laughs resulting in my momma bear stance.
What I’ve come to learn and you taught me this son,
Life is what you make it and we’re living it well.

We don’t dare give up and never give in
We’re a damn good team in having fun and raising all kind of sand.

My greatest fear acknowledged, realized, and accepted metamorphosed into an exhilarating unspeakable joy not understood by most.

You’re my prince and I will always celebrate you.

Clamoring over inchstones as I know it’s a milestone for you,
Initiating and having the muscles in your legs to activate and fire.

Putting in the work, showing will, heart and a lot of desire
I can’t do it justice to express how excited I am that at almost 7 you took your
FIRST half, sorta, kinda of a step!

When doctors said you wouldn’t you’re showing them you can,
It takes time and opportunity to morph into all that you can.

My greatest fear metamorphosed into my most exhilarating unspeakable joy.

Naomi Williams is a mother on a mission to help families and caregivers navigate life with kids who are differently-abled. She believes kids with special needs can and should lead an exceptional life. When she’s not out there speaking to the community or medical professionals about the importance of advocacy and inspiring others to lead an extraordinary life, you’ll probably find Naomi training for her next big triathlon, cheering Noah on in a marathon, roller skating, traveling and sightseeing, or taking a long deep breath on her yoga mat. You can visit her at naomidwilliams.com and www.exceptionalliving101.org.