From the Very Beginning
My 2-year-old son has Down syndrome, and his hearing journey started right after birth.
Already in the hospital, he passed the newborn hearing screening in only one ear. The other ear did not pass. I knew from when I was pregnant that Down syndrome hearing loss is very common. From that moment on, we have been visiting ear specialists regularly.
At six months old, we learned that he could hear with one ear, but the other ear had little to no hearing. By the time he turned one, fluid had built up in his hearing ear. He then had surgery where small tubes (grommets) were placed in his eardrums.
Because of that, we couldn’t go swimming for 10 months.
Now the tube has fallen out, everything has healed, and we can finally enjoy swimming again.
The Latest Hearing Test
We recently went for another hearing test, and in a way – it went well.
Nothing has changed.
- No inflammation
- Only a small scar where the tube used to be
- Left ear passed all tests immediately
- Right ear did not pass, even after 40 minutes of testing
This confirms a severe or profound hearing loss in one ear.
Since his left ear hears well, doctors are not recommending any intervention right now. The good ear compensates.
It reminds me of how people live with one functioning kidney – you simply monitor it more closely and take good care of it.
Getting There Was an Adventure
The trip itself was a challenge.
We had to leave the house before 8 AM – all four of us. I am currently eight months pregnant. Somehow, we made it.
My partner and 4-year-old daughter came with us to the bus and helped us get on. Then they continued their day – kindergarten and work – while I continued the journey alone with my son.
I hoped he would fall asleep on the bus.
He didn’t.
Instead:
- he climbed everywhere
- grabbed everything within reach
- eventually vomited
The bus was crowded. The man sitting next to me didn’t move to the empty seat beside him, which made everything even more complicated with bags, a stroller, and a toddler.
Finally – five minutes before arrival – my son fell asleep.
Choosing Sleep Over Schedule
We were supposed to get off earlier, but I made a decision:
let him sleep.
We stayed on until the main bus station so he could rest for at least 15–20 minutes. It was worth it.
From there, I continued alone with:
- two bags
- a stroller
- a toddler
Public transport with a stroller is not easy. Even though buses have features to lower the entrance for strollers and wheelchairs, none of the drivers used it.
One driver helped. Otherwise, I managed alone or with help from strangers.
A Beautiful Visit in the Middle of Chaos
Before the hospital, we visited my childhood friend and her one-week-old baby boy.
He was so tiny and precious.
Seeing my son next to him felt surreal – he looked so big already.
What touched me most was how gentle my son was:
- softly touching the baby
- gently stroking his head
- watching quietly while the baby was feeding
We stayed for about an hour. I gave them the gifts I had prepared, and they kindly walked us to the bus stop afterward.
Keeping Him Awake (On Purpose)
After that, we went to a shopping center to eat and take care of errands that cannot be done in the countryside.
My son was still tired, but I kept him awake on purpose.
Why?
Because I needed him to fall asleep at the hospital for the hearing test.
The Hospital Challenge
Even getting into the hospital was not easy.
The examination room was on the second floor, and at 34 weeks pregnant, I simply could not carry:
- a child
- a stroller
- bags
The receptionist saw the situation and helped by carrying my son and the stroller upstairs. I only carried the bag.
That small act of kindness meant everything.
The Hearing Test Process
First, they tried a test using sounds and visual rewards (cartoons).
Sometimes he responded, sometimes not. He was far more interested in:
- the nurse’s hands
- toys in the room
Then the doctor gave him melatonin.
I held him in my arms, and he fell asleep.
The sleep test went perfectly:
- lasted about 45 minutes
- he slept calmly
- results were clear
In total, we spent nearly two hours there.
The Results and What Comes Next
The doctor confirmed:
- no changes
- no new concerns
- everything is as stable as possible
If there are no issues, we will:
- check in again at the beginning of next year
- do another full test in about a year
He will likely be monitored for life.
If we notice any signs – like him touching his ear or seeming uncomfortable – we need to get it checked quickly to rule out fluid buildup or inflammation.
For now, everything is stable.
And honestly, you wouldn’t notice anything just by looking at him. He is alert, curious, and reacts to everything around him.
The Journey Back Home
After the appointment, the doctor and nurse once again helped carry my son and the stroller downstairs.
From there:
- back to the bus station
- something to eat
- and finally the bus home
This time, he slept for an hour on the bus.
The ride back was much calmer.
At the station, my partner and daughter were waiting for us.
It felt so good to see them.
Ending the Day
We went home, relaxed, ate, and got ready for bed.
Today is a quiet day.
Tomorrow – we go to the city again. This time to the children’s hospital.
That will be a story of its own.
Holding On to the Positive
These days are long. Sometimes exhausting.
But they are also full of:
- small victories
- kind people
- proud moments
Most importantly – I am so proud of my son.
He is strong, gentle, and incredibly brave.
You are not alone.
If this story resonated with you and you’d like to go deeper, you can explore my e-book Our Journey – A Different Path. It offers honest reflections and lived experience beyond this post.
If you’re looking for practical support, I’ve created Routine Templates to help parents and children navigate daily life with more clarity, structure, and understanding.
You can also read my previous posts or follow along on Instagram @parentguidancehub, where I share everyday reflections on parenting, family life, and finding balance.
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