The Mistake Almost Every Parent Makes After a Diagnosis
One Mistaken Assumption
When my son Nathan was diagnosed with cerebral palsy at just nine months old, I walked into this new world with one very natural assumption.
I believed someone was going to teach me.
I thought someone would sit down with me and explain what Nathan's diagnosis meant in a way I could understand. I expected someone to help me understand how cerebral palsy might affect his development over time, what I needed to be watching for, and what I could do to help him reach his greatest potential.
I assumed someone would answer not only the questions I had, but also the questions I didn't yet know to ask.
Most of all, I expected someone to help me understand what this diagnosis meant for me.
What was my role now?
What was I being called to become as Nathan's mother?
Over the next two years, we met with thirteen different specialists and professionals. Each one brought valuable knowledge and expertise within their own discipline. They cared about Nathan, evaluated him, made recommendations, and helped us understand one piece of the puzzle.
What I didn't realize then was that no one person's role was to help me put all of those pieces together.
I had assumed that because my child had entered a system filled with experts, someone within that system would intentionally prepare me for the lifelong role I had just been handed.
So eventually, I stopped waiting for someone else to connect all the dots.
I rolled up my sleeves and got to work.
Because I realized that if I was going to become the mother Nathan needed—and deserved—I couldn't remain a passive recipient of information.
I had to become an active learner and leader.
And that's the role you're being called to play, too.
I know that probably feels overwhelming right now.
But I also know this: fifteen or twenty years from now, you're going to look back and realize just how much you've learned, how much you've grown, and how much you were capable of all along. One day you'll smile and think,
"I didn't know I could do it...but look at me now.
,
If I had to start all over again, knowing what I know today, the first three things I would do are:
1) Find your community: After receiving Nathan's diagnosis, the very first thing I would do is find a community like this one—a community of parents who are further along the path than I am, who could help me understand what lies ahead, what questions I should be asking, and what I need to be preparing for. Most importantly, they would remind me that what I'm going through, I'm not going through alone.
2) Stock Up On Notebooks I would buy several notebooks and keep them everywhere—in my purse, on my nightstand, at my desk, and in my car—because you're about to learn a tremendous amount of information in a very short period of time. Having multiple notebooks close by gives you a place to capture what you're learning, the questions that come to mind, and the information you don't want to forget until your understanding has had time to catch up.
3) Write it down. Write your thoughts, your questions, what you learned during appointments and meetings, the things you still don't understand, your prayers, and the observations you're making about your child. Capture the milestones, the setbacks, the victories, and even the ordinary moments that might not seem important today, because over time they'll become part of your child's story—and yours.
Because writing isn't just therapeutic. Over time, it gives you an accurate record of your journey. It allows you to look back and see just how far you and your child have come. And who knows...one day, like me, you may even find yourself writing a book that helps another parent beginning this very same journey.
Maybe you've just received your child's diagnosis and you're wondering,
"Now what?"
Maybe you've been walking this road for a few years, and you're still trying to figure out how all the pieces fit together.
Or maybe you've been on this journey much longer. You've learned a lot along the way, but you're looking for a community of parents who understand, where you can continue learning, share your experiences, and perhaps discover something you hadn't considered before.
Whatever brought you here, you're in the right place.
This is the first article in a series about those early days after diagnosis. In the weeks ahead, we'll explore the questions I wish someone had helped me answer when Nathan was first diagnosed—one conversation at a time.
I'd love for you to be part of that conversation.
Share your experiences in the comments below. Tell me where you are in your journey and what questions you wish someone had answered for you. As we continue to grow The Special Needs Mama Bear community, my goal is to meet parents where they are and create the resources they need most.
Until next time, take good care of yourself.
And while you're here, I invite you to explore the other resources available on The Special Needs Mama Bear website. I hope they encourage you, equip you, and remind you that you never have to walk this journey alone.
