No One Expects to Have A Neurodiverse Child

By Stefanie Ricchio

Ahh to be childfree. Remember all of the ways you thought you would conquer the world? I do. I believed in my heart of hearts that my life’s master plan wouldn’t be disrupted by children.

Then I actually had children.

(A quick moment to “aww” at how cute and innocent I was back then).

And now, I one-hundred percent, totally and completely understand why seasoned parents give the “you have no idea what’s coming” face to new parents. Because it’s true, you really have NO IDEA.

Here is what I did know back then: I wanted a career and four kids. Spoiler alert: I quit after two.

My heart and mind had met capacity and gained some fear (although, I did toy with the idea of more babies in my late 30s.)

My firstborn (my textbook child), is quiet, simple, no-fuss-no-muss. Truly an angel and I couldn’t be more grateful for the experience of being her mom. She prompted me to stick with the plan of having kids close together. “Get it over and done with” was my thought. Then, I could get back to work faster.

So, 16-months later my beautiful blonde hair blue-eyed boy was born. (Neither I nor his father has blonde hair or blue eyes FYI). He came barrelling out at 9lbs 9oz with 30 minutes of contractions. I loved him for that!

Fast-forward 12-hours and the drama begins. Joey turned blue, very blue. He had tachycardia (high heart rate) but before we knew that, all we knew was that he needed to be sent to the NICU immediately – because his heart could stop at any moment.  

For the rest of my life, I will never forget the pain of when they held him out in front of me in their outstretched arms before putting him on the gurney for transport and told me to say goodbye…just in case.

Just in case he died before arrival.

When I think of my life and personal evolution, that moment was the marker of a major transformation.

Before this day, I was a hothead woman who wasted time worrying and was easily triggered by the slightest thing. I had no perspective on the importance of where to spend my energy effectively and wisely. None whatsoever.

After this day, I became the complete opposite person. Compassionate, sympathetic, calm.

It takes A LOT to get a reaction out of me, likely because I know what it feels like to be broken at the core and everything else pales in comparison. My perspective on life couldn’t be any more different because of this time in my life. Within that also changed the pressure that I placed on my career and the timeline. 

Thankfully all was resolved without surgery and he was healthy, as for as we could tell anyway.

There were many challenges that came after this moment in time, the impact of his dramatic birth created development delays. My perfectly imperfect neurodiverse baby boy. Every time he fell behind, I fell behind. Every time he succeeded, I felt like those were my milestone moments.

Someone very close to me once looked at me and saw the pain I carried in my heart because he wasn’t speaking and said to me “There will be so many bad moments, but I promise you that it will make the great ones so much more memorable.”

When he fell and I asked if he was ok, I expected him to say nothing. When the evening came that I asked and out of nowhere he said: “I ok.” We turned our heads away so the children wouldn’t see us crying.

When he repeatedly failed to be able to zip his coat, I was always there on my knees to do it. Even on the day he zipped it alone, except this time my heart was so overjoyed it dropped me to my knees with joy.

Being Joey’s mother has been the most difficult time of my life. To carry the burden and responsibility, the fear and anxiety and to protect him above all costs has never been easy. But in my heart I know this child was born to me for a reason, because I could be the warrior that he needed in a mother and that he would transform me into someone who could see the greater picture and the value in children like Joey.

Some days I am tired of the worry, I have to be honest in that as well. Sometimes I wish that his journey in this life hadn’t been riddled with so many challenges and how that would have changed my life. Raising a child with neurological challenges becomes your sole focus, everything else gets put on the backburner. Your other children, your job, your spouse, friends/family. Sometimes you create other wounds that don’t fully heal and so starts another journey of healing but I wouldn’t trade it for the world.

There is nothing that I have lost over the past 11 years that was more important than giving Joey every possible fighting chance to be his best and to have every opportunity in this world that his sister had.

August 12th, 2009 I drove him home from NICU and vowed in silence with gratitude that he was with me and promised to never go backwards and keep on as I was but to see the purpose and value in everything but more so, in everyone and that everyone deserves to be treated well, loved unconditionally and to have someone scream from the rooftops to support them.

NO matter where he, and his sister, go and no matter what they do, I will always be 2 steps behind them ready and waiting to lift them up or stand by their side and let them that in this life they will never be alone and will never have to fight alone.

That is the healing that I needed, and that my son gave to me. We can’t right the wrongs of our past, we can only do better. 

Always a lesson, never a failure.

Leave a Reply