What I Want Families New to Cerebral Palsy to Know
When your child receives a cerebral palsy (CP) diagnosis, you may feel as if the world stopped spinning on its axis. The future you imagined suddenly feels uncertain, and Google isn’t offering any reassurance.
But what Google isn’t telling you is something you desperately need to hear: Your child is not their diagnosis.
Cerebral palsy will not define who they are or who they become.
And yet the future seems final. Already written. Every answer seems to point to struggle and pain.
Will they ever get to be their own person? Fall in love? Have a family of their own? Will cerebral palsy make those choices for them? No.
The truth is, though it may be hard to believe, your child is more than their disability. Cerebral palsy may affect how they live and move in the world, but it will not change who they are or the light and love they bring to those around them.
So, How Do I Know This?
Hi, I'm Leeanne. I'm the creator of That Mom With CP, a mom to two wonderfully chaotic little girls, and I also have cerebral palsy. My parents were in your shoes around 28 years ago.
I was sent to a specialist at a children's hospital for concerns of CP. They confirmed it was a mild case of spastic CP.
My mom was shocked. She wasn't sure she believed them. There must be another explanation, she thought.
Maybe you're in the same boat right now. You have the diagnosis, but you can't quite wrap your head around CP. Or maybe you fall into a different camp, and you're just thankful for answers. Neither reaction is wrong.
Looking back now as an adult, a wife, and mother, I often think about what I wish someone had told my mom the day I was diagnosed with cerebral palsy.
Your Child Is Still the Same Child
Once you receive a diagnosis of cerebral palsy, it’s easy to imagine that everything has changed. And truthfully, some things may have. It’s okay to acknowledge that.
But your child will always be the person that they are. That is something no diagnosis can ever change.
- The baby who smiles and reaches for you.
- The toddler who says the funniest things.
- The child who loves bubbles.
- The child who has favorite songs, books, and movies.
The only thing that has changed is what you know.
You Can Grieve Without Losing Hope
It's completely normal to experience grief after learning your child has cerebral palsy. You may also feel relief at finally having answers, anger, or a mixture of many emotions all at once.
That doesn’t mean you’re a bad parent. Or that something is wrong with you for feeling that way. Or even that you love your child any less.
Receiving a new cerebral palsy diagnosis is life-changing. It will take a moment for your brain and your heart to catch up to your new normal.
The future you pictured may suddenly feel very different. You may wonder whether the dreams you've always had for your child are still possible. Those feelings don't make you a bad parent. They make you human.
Grief is part of the process. Let yourself feel, let yourself cry. And most importantly, remind your child — through your words and your actions — that your love will never, ever change.
This Is Not Your Fault
One of the first things my mom did after my diagnosis was replay her pregnancy over and over in her mind. She wondered if she'd missed something. If she'd done something wrong. If she had somehow caused my cerebral palsy.
Years later, after experiencing a miscarriage of my own, I understand that kind of grief in a way I couldn't have as a child. I know how easy it is to replay every decision and wonder, “What if I'd done something differently?”
If you've found yourself asking those same questions after your child's diagnosis, I want you to hear this: This is not your fault. You don't need to carry guilt that was never yours to carry.
Don’t Let a Diagnosis Decide Your Expectations
One of the hardest parts about a new diagnosis is that it can feel like you've been handed your child's entire future.
In reality, you've been given the name of a condition — not the story of a person. A diagnosis can help guide treatment, therapy, and support. But it cannot predict your child's personality, determination, friendships, dreams, or the joy they'll bring into the lives of the people around them.
If someone had looked at my parents the day I was diagnosed and told them I'd grow up to get married, become a mother, build a career as a writer, and advocate for other families living with cerebral palsy, I'm not sure they would have believed it.
Not because those things are guaranteed for every person with cerebral palsy, but because no diagnosis can predict the full story of a person's life.
Believe in Your Child Before They Believe in Themselves
A lot of people will assume your child isn’t capable simply because of their diagnosis. Don’t ever let them grow up believing that is true.
It is not your job to educate the world on cerebral palsy and what your child can or can’t do. However, it is your job (and arguably one of the most important) to steward your child’s strengths, gifts, and passions, and allow them to have dreams, regardless of what people think.
You have to be their biggest cheerleader and their number one fan. Your job is to believe in them so fiercely that they never stop and think, “Maybe I can’t do this because of my CP.”
One of the greatest gifts my parents gave me wasn't perfect advice or perfect answers. It was the confidence to believe that my diagnosis didn't get the final say. Sounds like a tall order, right? It is.
So lead in love. Walk with them through hard and challenging moments, and cheer them on during the struggle and on the other side. They will believe in themselves because you believe first.
If I Could Tell My Mom One Thing
28 years ago, my parents received the news that would change their lives forever. My mom, caring for me while also pregnant with my younger brother, was exhausted, overwhelmed, scared, and unsure what all of this meant.
Now, as an adult and a mom myself, I wish more than anything I could go back in time and give her the biggest hug and tell her: I’m going to be okay. And so are you.
She didn’t have everything figured out. It took a long time to get answers, and some things we still don’t really know. But as time went on, we figured out the things that mattered. How to grow, learn, and adapt.
My parents’ experience is probably very similar to many other parents after receiving a new diagnosis. I pray the insight their story brings offers peace and a glimmer of hope as you navigate the ins and outs of cerebral palsy.
As I close, I will leave you with this: You can do this. Find community. Lean on your support systems. Love hard, love well. Never give up. And most importantly, tell your child over and over again that cerebral palsy is not who they are. It’s just something that happened to them.
Their story is still unfolding, and this diagnosis is only one chapter of it.
Written by:Leeanne WilliamsLeeanne Williams is a guest contributor for Cerebral Palsy Guide and an integral voice behind our living with CP series. As a writer, wife, and mom of two living with cerebral palsy, Leeanne shares honest stories about motherhood, family life, and community. Her work creates space for connection and real conversations about the impact of cerebral palsy.
