Finding Certainty Within the Chaos

Written by Kathleen Ferdico Mural

The perils of parenting any child are daunting, but when you add the layer of an unexpected diagnosis the chaos can feel exponential.  I remember the weight of feeling like I survived a year of Down syndrome when my son Johnny turned one.  The next year that sentiment was replaced by a sense of foreboding, anxious about all the what-ifs as we navigated specialists, therapists, and development delays; holding my breath and searching for clues that might foreshadow his potential.  At three, something shifted, lifting my fog.  I let myself notice he was doing all the same things his older sisters had done, albeit on a different schedule and sometimes in startlingly creative ways.  I declared myself no longer the mother of a child with a disability—a word I despise because it places immediate attention on the wrong things.  I am simply the mother of three distinctly talented, able, and often exhausting children.  Chaos abounds.

There have been a lot of adventures in the 20 years I have been a parent.  My kids roll their eyes and ask why I call them adventures.  I’m not sure how else to label these events and survive intact, ready for the next one.  Broken bones, surgeries, a lost toddler in a New York City subway station, a pandemic.  Forever etched in my soul is the middle of the night visit by firemen and paramedics resulting in three children at once in the emergency room after a carbon monoxide mishap.  Two swabbed positive for strep throat that same night, and it was the middle sib’s birthday–or in her re-telling, the time I tried to kill them.  There’s no other way to remember that evening, except as an ADVENTURE of epic proportion–an “unusual and exciting, typically hazardous experience or activity,” according to the dictionary.  I strongly believe I’m modeling resilience, with a little humor along the way, to help them develop an important life skill.

During one particularly tumultuous time, we found ourselves in an uphill battle of advocacy for Johnny.  Talk about chaos–“complete disorder and confusion,” according to the dictionary.  The glass half-empty view of adventure.  As we considered options, my husband asked how sure I was about what we were contemplating.  The question stopped my brain in its tracks.  I trembled with the realization that I am never really sure when it comes to parenting my three distinctly talented, able, often exhausting children.

Thinking about this simple, yet profound question became a deep breath moment as I paused my ricocheting internal dialogue.  I retreated to a quiet space with a pen and notepad.  With surprising ease and clarity, I began to write.

• I am certain Johnny’s best chance for achieving independence as an adult is to fully include him in as many life experiences as possible.

• I am certain educational inclusion is possible and is the ideal setting for Johnny to achieve his academic potential.

• I am certain this is not the easiest path, but it is the one with the greatest payoff.

• I am certain all the great things Johnny has achieved are directly related to our commitment to these beliefs and the choices we’ve made to support them.

• I am certain the question to keep at the forefront is “How do we achieve this?” not, “Is this the right vision?”

• I am certain we will encounter people and institutions who question our direction, and we should always remain open to hearing and considering different perspectives.  Our decisions will be stronger if we make them with an understanding of all the angles.

• I am certain we will have missteps, but the power in them will be what we learn from them and how we use these learnings to shape the next steps.

• I am certain it will benefit our family if we treat our challenges as opportunities instead of problems.  Let this be our lesson when we face tough decisions.

• I am certain there will come a time to stop focusing on the injustices we perceive in the systemic flaws,  barriers, and external forces we confront.  We need to spend our energy supporting our children to help them grow and learn while building their confidence and self-esteem.

• I am grateful we are surrounded by people in our corner—not just because they care about us—but because they too believe in the possibilities we envision.

I guess the short answer was I was more confident than I initially gave myself credit for in the middle of our chaos, er, adventure.

Now, years later, I reflect on my certainties from time to time.  Perhaps one day I’ll find they need updating, but so far they still apply to the adventures we encounter—not just for Johnny, but for the ups and downs all three children have faced.  They’ve become my guiding principles, my reminder of why I often swim upstream.

If I were asked what advice I’d share with other parents of exceptional children, it would be this:  Give yourself grace and time to find your footing.  Then one day, take a few minutes with pen and paper and write down your certainties–the things you know in your heart are right and true for your family.  Tuck them away in a place where you will occasionally run across them.  Let them ground you and remind you how chaos can be an adventure when viewed through another lens.