Getting There Against All Odds
Yesterday, we headed to the capital again. Another intense, exhausting day.
This time, I chose to go by car because the bus schedules simply didn’t work. My 2-year-old son, who has Down syndrome, has been followed by the children’s hospital since birth. In the early years, we had appointments 3-4 times a year, now it’s about twice a year.
He had a bit of a runny nose, but overall he was in a good mood. I decided to go anyway. With so many specialists involved, postponing could mean waiting a long time for the next appointment.
The morning started with getting all four of us out the door. Thankfully, my partner’s father lent us his car. My partner took our daughter to kindergarten and went to work, while I drove to the city with our son.
We arrived right on time at 11.
Navigating the Hospital While Pregnant
At eight months pregnant, even simple things feel heavy.
I asked if I could keep my son in a lightweight stroller instead of carrying him, because moving around the hospital meant:
- long corridors
- elevators up and down
- constant transitions
Getting him undressed alone already took time.
We first saw a nurse who measured and weighed him, then moved on to the speech therapist.
Words That Stay With You
The speech therapist immediately noticed something important.
She said it was clear that our son has been worked with and cared for very well. She said she could see that he has received a lot of love.
That meant more than I can explain.
She gave him a doll, and he gently touched and stroked it. Moments like that say so much about who he is.
A Difficult Conversation
Next, we went to the psychologist.
This part took a long time.
At one point, I started crying. She asked if I have anyone to talk to about my son and everything we’ve been through. I shared how, during pregnancy, I was told hurtful things – how people questioned his worth and my decision to have him.
She said something very simple and very powerful:
No one should ever say things like that.
The Hard Truth About Development
The psychologist ran several tests. Some our son completed, some he didn’t.
The conclusion was difficult to hear:
he has a global developmental delay, both motor and cognitive.
He could:
- place small sticks into holes
- retrieve a toy from a transparent box
- put blocks into a cup
But he struggled with:
- matching shapes correctly
- solving tasks when the object wasn’t directly visible
- building a tower
- copying simple lines on paper
He is not yet walking independently and does not speak.
I knew that Down syndrome development delay was a very real possibility but still, these things were difficult tu hear.
Still, the psychologist emphasized his strengths:
- joyful
- social
- attentive
- willing to engage
She said these qualities are incredibly important.
Thinking About the Future
We were advised to start thinking about kindergarten.
Possibly next year, when he turns three.
She recommended:
- a specialized group or support person
- an environment suited to his developmental level
She also explained something that stayed with me:
If we wait too long, other children may develop much faster, and it could become harder for him to integrate socially.
Living in the countryside makes this complicated. There is only one kindergarten nearby, with large groups.
Questions keep running through my mind:
- Will he get enough attention?
- Where do we find a support person here?
A Sister’s Path Is Different
We also talked about my daughter.
I admitted I worry about bullying and have even considered keeping both children at home.
The psychologist gently disagreed.
She said my daughter is developing very well and benefits from being in a group setting. Keeping her home would not support her needs.
That was hard to hear, but also important.
Children in the same family can have very different needs.
Small Encouragements
There was also hope.
The psychologist said independent steps will likely come soon, because he already walks confidently when holding hands.
Speech, however, may take much longer or may not fully develop.
We’ve seen some words come and go. We talk, sing, and engage with him constantly. Still, progress is unpredictable.
More Appointments, More Observations
After that, we went to a playroom to eat and rest a bit.
Then came:
- neurologist
- nurse
- physiotherapist
The neurologist had no major concerns. Just advice to take care of his skin, which had become dry from cold and wind.
We were told to return again in 6 months and in a year.
Regular blood tests are needed twice a year to monitor thyroid levels, which have thankfully always been normal.
The physiotherapist gave us a referral for orthopedic shoes, since he is close to walking.
She said:
he is active, strong, and doing well.
One More Stop Before Home
After 2.5 hours, we were finally done.
At 1:30 PM, we left the hospital.
My son fell asleep almost immediately in the car.
We drove straight to the orthotics center. I carried him inside, still asleep. They brought a pillow and blanket, and he slept peacefully on the floor while we chose his shoes.
We ordered:
- sneakers
- sandals
Hopefully, these will support his first independent steps this spring and summer.
Knowing When to Let Go of Plans
I had planned to:
- go eat
- run errands
- visit the cemetery
But time and energy ran out.
We drove straight home.
Ending the Day on Empty
On the way, we picked up my partner’s father to return the car.
At home, I greeted my partner and daughter, quickly prepared my choir materials, and left again.
Choir rehearsal.
I got home at 9 PM.
We went straight to bed.
And I Thought I Was “Just at Home”
Sometimes people ask what I do all day.
Days like this are the answer.
Eight months pregnant. Carrying, driving, organizing, supporting, deciding, feeling everything all at once.
And just a few days earlier, we had another similar day with hearing tests.
Now we rest for a couple of days.
But not for long.
Life continues:
- birthday party on Saturday
- swimming and therapy on Monday
There is always something.
A Brave Little Boy
Through all of this, one thing stands out the most.
My son.
Everything he goes through, all the tests, all the changes and he handles it with such strength.
I couldn’t be more proud.
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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