When a couple finds out they’re having a baby, people have a tendency to imagine their child’s whole life. You imagine him taking his first steps, saying his first words, what sport he’ll play, what college he’ll go to. And so on and so on.

Then when you find out the baby’s sex, you may have to adjust a bit, but there is still a sense of anticipation. And when the baby is born, it only increases. Now you’re waiting for your baby’s firsts.

My nephew was born with Down syndrome a little over two years ago. There’s been a lot of anticipation, but more often than not a lot of adjustments of expectations. When you love a child born with Down syndrome, you have to learn patience.

We have these silly notions that there is a timetable for these things. There isn’t.

That isn’t just a fact of living with Down syndrome. That’s true of everyone. Some people are born prematurely, others show up late. Some babies are born with a full head of hair. Maybe your daughter was speaking early. Maybe your son went through puberty late.

My nephew has been going to various forms of therapy for about a year now to facilitate his development. He’s pretty close to walking. It could perhaps happen relatively soon. Speech therapy is a little more complicated. He says words every now and again. Maybe it’s my ego, but I could swear he said “Uncle” a few months ago. Just the one time though. He hates to repeat himself.

But we do know that he’s attempting to communicate. We know he understands and is trying to tell us what he’s thinking. It isn’t that he’s not getting it. From his perspective, it’s us who aren’t getting it. And you can sometimes see his frustration. We aren’t the only ones with that sense of anticipation. He’s waiting for the day when we will understand him.

When is a question that gets asked quite often. It isn’t a good question.

It’s important not to focus on when it happens. We need to appreciate his life as it’s happening. Waiting for something to happen is wasting the opportunities in front of us.

When he starts walking, he won’t want us to hold him anymore. When he starts reading, he won’t want me to read to him. And sure, there will be other things to share with him. But right now, we get to have him as he is right now. That’s really special.

We just have to be patient enough to appreciate it.

Patience was written by Adam, Remy’s uncle.

Recent Posts


Discover Teen Tastic at GiGi’s Playhouse New Orleans: Building Social Skills in a Fun Setting

At GiGi’s Playhouse New Orleans, we are dedicated to empowering individuals with Down syndrome through innovative programs that foster development and celebrate achievements. We are...

Math Tutoring by Kayla Vo

I got the chance to volunteer as a 1-on-1 math tutor at Gigi’s Playhouse New Orleans, and I had a great time doing so. The...

Dual Diagnosis – Down Syndrome & Autism

Since it is Autism Acceptance Month, we wanted to take a moment to highlight the dual diagnosis of Down syndrome and autism. While While a child with...

Leave a Comment