19/04/2026
This from another support site but could have been written by any of you.
A letter to the mom hearing the words “Trisomy 18” for the first time
Hey. Hi.
I know you don’t know me, but I’m here for you in any way I can be.
I unfortunately understand exactly how you’re feeling right now. I will always remember the day I heard the voice on the other end of the phone say, “She has Trisomy 18.” Nine years later, that moment has never really lost its sharpness.
And I know every situation is different. For us, she was our only child together and already a month old. We couldn’t understand how no one had said anything before. We couldn’t comprehend it. And we couldn’t believe it when we started reading words like “incompatible with life.”
The statistics have changed so much since then, so I hope you have the strength and instinct to really dig into what’s possible for these kids. I hope you find hope, like we did, in the families who shared stories of survival and miracles and milestones. And I hope you also find gratitude for the families who have suffered loss and grief. They carry a level of grace I hope I never fully understand.
If you’re learning what Trisomy 18 is while you’re pregnant, I hope you have all the information you need to make your choice. And maybe that’s why you’re here... to see what can be possible. No matter what choice you make, it is yours to make, and you have every right to do what is best for you. I can’t pretend to fully understand what you’re carrying in this moment.
I will never lie to you and say it’s all rainbows and butterflies. Life as a parent to a differently-abled child has hard parts. And although I’ve never had the opportunity to raise a typical child from birth, I can say with confidence that the first year with a baby who has T18 has to be one of the hardest things a parent can walk through.
I hope you find a medical team that supports both you and your child fully, and that they also help you see some light at the end of the struggle.
I was never given the choice of deciding whether this life was for me. And honestly, I can hardly remember who I was before it happened. I certainly never thought I could do this. But it is amazing what the human spirit is capable of when it has no choice but to rise.
And your child will show you that too.
You will watch their perseverance and be inspired by it. They will teach you more than you ever thought you could learn about life.
Because of my daughter, I’ve learned that life is short, so I refuse to live one that isn’t fulfilling. I’ve learned that patience and trust are sometimes non-negotiable. I’ve learned how little control I truly have, and because of that, I’ve learned to prioritize experiences over possessions. I’ve learned to appreciate even the smallest moments.
I’ve also learned that very few people will truly understand what your life has become. Most people around you won’t. But the ones who do... they will become your people. Your tribe. You will make bonds with people across the world because of this diagnosis, and sometimes their journeys will look so different from yours that you will grieve those too.
And you will learn so much about grief.
So, so much.
In many ways, grief begins the moment you hear the diagnosis. And somehow, that feeling stays with you. It changes shape, but it doesn’t just disappear. It becomes a part of who you are now. And however it shows up for you, you will have to learn how to carry it.
You will also have days you want to quit. The world wouldn’t blame you if you did. But I pray you don’t. I hope you let yourself feel the weakness without letting it swallow you. I hope you keep going long enough to get to the other side.
This is your only chance at life. Live it.
My daughter has taught me that we are meant to feel all of it. And once you survive the hard, you will begin to learn joy.
Pure joy.
Joy in things you never expected would matter so much. You’ll find it in first smiles, giggles, and moments you were told might never come. You’ll find it in family gatherings, in laughter, in quiet, ordinary moments that somehow become sacred. You will find it. And I hope when you do, it fills you with gratitude.
You will inevitably change. But the strength that comes from this life will be a gift.
I can’t be shaken by much anymore, because I know what I’m capable of. I have been inspired and motivated by the life of my daughter enough to fight for my mental health, start my own business, found a nonprofit, go on the news, advocate loudly, dream big, and actually believe in those dreams because I now know what is possible.
At this point, I believe almost anything is possible. And honestly, that kind of delusion has been a gift.
The second someone says they’ve found out their child has T18, people are usually so quick to say, “I’m sorry.” And I understand why. But I also want to remind you that there can still be beauty here. There can still be meaning here. There can still be love, joy, growth, connection, and purpose here. No matter how this journey unfolds, it will shape you. And I hope, in time, you’re able to see some of that clearly.
So I just want to say this:
You are not alone.
And I hope you’ve found a friend in me. Because while I don’t know everything, I can tell you this: nine years in, I wouldn’t change a damn thing.
I truly had no idea what life would look like when I first heard those words. But this life has pushed me to become a better human, a better wife, a better mom and stepmom, and a stronger version of myself.
And for that, I am deeply grateful.
Welcome to the tribe, my friend.
I can’t wait to see who your child helps you become.
