Guest Post: Don’t Miss the Baby in Front of You

Written by Shannon Dorchak: Tate’s Mom, 2024 Basket Recipient, and current Basket Delivery Parent

I have replayed the day Tate was born in my head more times than I could ever count.

November 8th, 2024.

The day we met our third baby.

The day Reese and Carson became a big sister and big brother again.

And the day two words entered our family’s story that we weren’t expecting: Down syndrome.

We didn’t know before Tate was born. There wasn’t a prenatal diagnosis. We hadn’t spent months researching Down syndrome or talking about what raising a child with Down syndrome might look like. We hadn’t prepared ourselves for the possibility.

We went to the hospital expecting to have our baby.

And we did. Our beautiful baby boy was born.

But somewhere in those first hours, the day I had imagined changed.

There were looks. Questions. Assessments. And then came the conversation.

There was concern that our baby might have Down syndrome.

I can still remember what it felt like hearing those words.

Everything around me seemed to keep moving, but somehow I stopped.

I was a nurse. I had spent years in hospitals. I understood medical terminology. I knew what chromosomes were. I knew what Down syndrome was.

At least, I thought I did.

Because suddenly this wasn’t something in a textbook. This wasn’t a patient. This wasn’t a diagnosis belonging to someone else’s family.

This was my baby.

And in that moment, all of my medical knowledge disappeared, and I was simply a mom lying in a hospital bed trying to understand what this meant for her son.

I looked at Tate and loved him so deeply it hurt. And I was terrified.

Those two feelings existed together.

That is something I wish people talked about more.

Sometimes receiving an unexpected diagnosis isn’t immediately inspirational or beautiful.

Sometimes it’s messy.

Sometimes you cry.

Sometimes your mind goes places you wish it wouldn’t.

Sometimes you grieve a future you had created for a child you had only just met.

And sometimes you feel guilty for feeling any of it because there is a perfect little baby lying right beside you.

I remember my brain racing ahead.

Would he be healthy?

Would he walk?

Would he talk?

Would he go to school with other kids?

Would he have friends?

Would Reese and Carson have the relationship with their brother that I had pictured?

Would he be independent someday?

Would people be kind to him?

Would he be happy?

I was holding a newborn while worrying about a grown man who didn’t even exist yet.

That’s the part I wish I could change.

Because if I could walk back into that hospital room today, I wouldn’t bring a medical book. I wouldn’t bring statistics. I wouldn’t bring a list of things Tate might struggle with.

I’d bring Tate. The Tate we know now.

I wish I could introduce that scared mom to her son.

I wish I could put today’s Tate down on the floor of that hospital room and let her watch him.

I’d let her see his smile first.

I’d let her hear his laugh.

I’d let her see how his entire face lights up when he sees someone he loves.

I’d show her how determined he is.

I’d show her the little boy who worked so incredibly hard to crawl and then decided crawling wasn’t enough, because apparently climbing everything was the next logical step.

I’d show her the little boy who learned he could leave a room all by himself and immediately used his new freedom to go find his brother and sister.

I’d show her the therapy sessions.

The hard work.

The celebrations.

The snuggles.

The dancing.

The stubbornness.

The mischief.

The personality that cannot possibly be explained by a chromosome count.

And I’d probably laugh and tell her: “You’re worrying about whether he’s going to be okay. Meanwhile, someday you’re going to be worrying about what he’s climbing onto next.”

Because that’s the funny thing about fear. Fear tells you a story about a future that hasn’t happened yet. And in those first hours, I let fear tell me so much about Tate’s life before Tate ever had the chance to show me himself.

What would I tell a new parent receiving a Down syndrome diagnosis?

I think about this question differently now because I’ve been that parent.

And I don’t think my first instinct would be to give advice.

I’d want to sit beside them.

I’d want them to know they don’t have to perform bravery for anyone.

You don’t have to immediately say, “Everything happens for a reason.”

You don’t have to become an advocate overnight.

You don’t have to research every possible medical condition.

And you definitely don’t have to figure out the next 30 years of your child’s life while they’re still wearing a newborn diaper.

You are allowed to just be their mom. Or their dad.

You are allowed to feel joy and fear at exactly the same time.

You can love your baby more than anything in this world and still need time to process a diagnosis you weren’t expecting.

And then I’d tell them something I desperately wish I could whisper to myself on the day Tate was born: Don’t miss the baby in front of you because you’re afraid of the future.

Look at them.

Memorize their face.

Hold those tiny fingers.

Smell that newborn head.

Take a ridiculous number of pictures.

Let their siblings meet them.

Tell everyone their name.

Celebrate their birth.

The therapies can wait.

The specialists can wait.

Google can DEFINITELY wait.

Today, you had a baby. And that deserves a “congratulations”.

What do I wish I had known?

I wish I had known how normal life would be.

I wish I had known that there would eventually be entire days when Down syndrome wasn’t the first thing on my mind.

Because in the beginning, the diagnosis felt enormous. It felt like it had entered the room before Tate had even had a chance to.

Now? He’s just Tate.

He’s Reese and Carson’s little brother.

He’s the baby of our family.

He’s the one crawling around trying to get into whatever everyone else is doing.

He’s the one working his little tail off in therapy.

He’s the one who gives the best snuggles and makes us celebrate things we once wouldn’t have thought twice about.

Yes, Down syndrome comes with us.

So do therapies.

So do specialists.

We’ve had scary moments. We’ve dealt with sleep apnea, surgery, appointments and continuous insurance battles.

There are things I wish Tate didn’t have to work quite so hard for.

There are still things about his future that scare me sometimes.

I don’t want to paint a picture that says, “Everything is perfect!” That’s not real life.

But neither was the picture fear painted for me on the day he was born.

The reality is so much sweeter than the fear.

What has surprised me most about raising a child with Down syndrome?

The joy.

Without question.

Before Tate, so much of what I knew about Down syndrome came from the medical side.

Risk. Delay. Complication. Likelihood. Percentage.

Those are words medicine uses because medicine needs them.

But those words don’t tell you what it’s like to love someone.

A medical chart can’t explain what it feels like when your child finally accomplishes something he’s been working toward for months.

It can’t measure pride.

It can’t capture the screaming and cheering when he does something another family might not even think twice about.

Tate has taught us how to slow down and notice progress.

He’s taught me that there isn’t one correct timeline for being human.

He’s taught our family that taking longer to get somewhere doesn’t make arriving any less incredible.

If anything, sometimes it makes the celebration bigger.

And I think that’s one of the greatest gifts Tate has given us.

We celebrate the little things now.

Because we’ve learned they’re really not little at all.

And then there was Jack’s Basket.

When Tate was born, so much information came at us.

Things to monitor.

Appointments to make.

Medical information.

Things that might happen.

Things that might not happen.

It can feel like your beautiful new baby has suddenly turned into a list of potential concerns.

And then we received a Jack’s Basket.

There were thoughtful things inside, of course.

But when I think about that basket now, I don’t really think about the things. I think about the message.

“Congratulations on your baby.”

Those words sound so simple.

But when your baby’s birth unexpectedly becomes intertwined with a diagnosis, sometimes people don’t know what to say.

Sometimes celebration becomes sympathy.

Sometimes excitement becomes worry.

Sometimes people start talking about everything that could be difficult before they’ve even said how beautiful your baby is.

Jack’s Basket did something different. They celebrated Tate.

They reminded us that before anything else, a baby had been born. OUR baby. And he was worthy of every bit of celebration that Reese and Carson received when they entered this world.

That basket was one of the first little glimpses I had into a community I didn’t even know existed. A community that seemed to say: “We’ve been where you are. There is life on the other side of this fear. And it is good.”

I couldn’t have known then just how important Jack’s Basket would become in my life.

Because now, somehow, I get to be the person carrying the basket.

I get to walk into hospital rooms and meet brand-new babies with Down syndrome.

I get to meet moms and dads who may be feeling some of the exact things Cris and I felt.

And every time I do, a tiny part of me is back in that hospital room with Tate.

Except now I know what comes next.

Now I know about the joy.

Now I know about the milestones.

Now I know about the community.

Now I know how much one little extra chromosome would teach our entire family.

And because I’m a nurse, this journey has changed another part of me too. It has changed the way I think about how we in healthcare deliver unexpected news.

Because the words we use matter.

The expression on our face matters.

The way we enter that room matters.

Hope matters.

Families may not remember every medical fact we give them in those first hours. But they will remember how we made them feel.

Sometimes I wish I could have five minutes with the old me. Just five.

I’d walk into that hospital room and sit beside her.

I’d probably cry right along with her because I remember that fear.

Then I’d tell her: “He’s okay.”

Not because life will always be easy. Not because Down syndrome doesn’t come with challenges.

But because the question underneath all of her questions was really just: Is my baby going to have a good life?

And now I know the answer.

I’d tell her:

He’s going to laugh.

He’s going to learn.

He’s going to frustrate you.

He’s going to amaze you.

He’s going to work harder than you ever imagined someone so tiny could work.

His brother and sister are going to adore him.

He’s going to change the way you see disability.

He’s going to turn you into an advocate before you even realize it’s happening.

He’s going to introduce you to people who will become incredibly important to you.

And someday, because of him, you’re going to walk into another mother’s hospital room carrying the exact kind of hope you needed today.

Then I’d tell her to stop looking so far ahead. Because she’s missing him.

“Look down, Shannon.”

Look at those tiny fingers.

Look at that little nose.

Look at those cheeks.

Look at your son.

His name is Tate.

You don’t know him yet. And neither does Down syndrome.

Give him a chance to show you who he is.

Tate is almost two now.

And I still don’t know exactly what his future looks like.

But here’s the difference: I don’t need to anymore.

None of us know exactly what our children’s lives will look like.

We just don’t usually receive a diagnosis at birth that makes us feel like we’re supposed to figure it all out at once.

So we’ll keep doing what every other family does.

We’ll love him. We’ll advocate for him.

We’ll push him when he needs pushing.

We’ll protect him when he needs protecting.

We’ll celebrate with him.

We’ll probably spend an unreasonable amount of time driving to therapy.

And we’ll cheer ridiculously loud every single time that little boy shows us what he can do.

Down syndrome changed the story I thought I was going to write.

But it didn’t ruin the story.

It introduced me to a story I didn’t know I was going to love this much.

So if a brand-new parent somehow finds these words while sitting in a hospital room like I once did, this is what I want you to know:

You don’t have to be okay yet.

You don’t have to understand it yet.

You don’t have to call it a blessing yet.

You don’t have to know what your child’s life will look like.

Just start here: Look at your baby. Learn their little face. Say their name. Hold them close.

And please allow me to say the words that should never get lost in a diagnosis: Congratulations.

Congratulations on your beautiful baby.

There is so much about them you don’t know yet.

And that is the beautiful part.

They get to show you.