Knowing, Wanting, and Choosing From the Very Beginning
This is an honest story about what hurt more than a Down syndrome diagnosis during pregnancy—lack of support, harmful comments, and learning to survive day by day.
I learned about my son’s Down syndrome diagnosis at 12 weeks of pregnancy. It was a shock, of course — but what followed was far more painful than the diagnosis itself.
I had known even earlier that there was a risk. And there was never a moment of doubt. We wanted him just as much as we did when I first found out I was pregnant at seven weeks. Nothing about that changed.
I truly believed that no matter what, we would manage. A child is a child — that’s what my partner said, and that’s what his parents said too. Long before this pregnancy, my partner and I had already agreed that I would stay home with the children and focus on them, while he would make sure there was food on the table and bills were paid. That was our plan, and it felt right.
After the diagnosis, suddenly there was so much to think about.
Trying to Prepare for an Entire Lifetime at Once
A few weeks after the diagnosis, the geneticist called me again. By then, I had already read an entire book about Down syndrome and filled pages with questions:
- How likely is a heart defect, and what happens if there is one?
- How do I make sure my older child doesn’t get neglected?
- What kind of financial support is available?
- How can I best support my child’s development?
- What health issues are most likely to come up?
I got answers to all of these questions. I write more about them in my book — what the geneticist said and how I see those answers now, looking back.
In short: I knew too much too early. I worried excessively and tried to plan my child’s entire life before he was even born. I wish I had taken it one day at a time.
The Absence of Support Hurt the Most
What truly broke me wasn’t the diagnosis. It was the lack of support.
I had support from my partner, from my daughter, and from my partner’s parents. There were also kind words from some people — especially parents I connected with through the Down Syndrome Association.
But there were far too many negative, unexpected comments from healthcare professionals and people around us. From doctors. From acquaintances. From “village people” who felt entitled to an opinion.
If I had known how much harm those words would do, I would have shared the diagnosis with far fewer people.
My trust in people — including medical professionals — was already fragile. After this, it nearly disappeared. Now, I don’t really want to see anyone at all. Not that I have much time anyway, with a four-year-old and a two-year-old.
Why I Chose a Different Path This Time
During my third pregnancy, I decided to step away from most tests and ultrasounds. I couldn’t go through it again.
I didn’t want to hear comments like:
- “What are you thinking, keeping this baby?”
- “I could never have that child.”
- “Your life will be tragic.”
- “He will be a burden to everyone.”
I also began to feel that medical professionals were interested only in collecting information about the fetus — regardless of how that endless testing, traveling, and emotional strain affected me, my other children, or our family’s sense of peace.
Throughout that pregnancy, I was anxious, crying, and afraid. No one asked how I would get home after appointments where I had been told frightening things. No one noticed that I was in no condition to drive — but I did anyway, because I just wanted to get back to my family.
No one asked how my one-and-a-half-year-old daughter was doing while I was constantly away. No one ever said:
“Take a breath. Go home. Rest. Focus on your toddler. There is nothing you can change for the baby in your womb right now.”
Yes, you could say I agreed to all of it. But still — healthcare professionals and people around us could have shown more humanity.
When Everything Turned Out Fine — But the Damage Remained
The birth went well. In the hospital, my baby was cared for, and medically, everything turned out fine.
Today, my son is everyone’s favorite. But what we went through left a mark.
I don’t want to interact with doctors unless I have to. I don’t want to interact with people who feel free to say cruel things without thinking. I feel the constant need to protect myself and my baby from words that hurt — even when they are spoken without bad intentions.
Thoughtlessness can wound just as deeply.
Facing Birth Again With Lingering Fear
After two emergency C-sections, I will most likely need a planned one this time. I don’t want to be in this situation — but I have to be. My baby needs to be born safely.
There is still time until April, but I think about it often. How do I trust myself into other people’s hands again?
I hope everything goes well. I hope I can breastfeed. Breastfeeding has helped me heal after hospital stays before. Keeping close physical contact with my baby and spending time with my other children has been the best therapy I know.
Sometimes I think that drinking a bottle of vodka would make everything disappear — but I’ve been pregnant or breastfeeding for years now, so that’s not an option. And maybe that’s a good thing.
A Calmer Pregnancy, a Slower Pace
This pregnancy is actually calmer. There is no endless running between appointments. No constant bad comments. I don’t know much about this baby — and that brings peace.
I am healthy. I’ve had basic tests for infectious diseases. That’s enough for me.
What gives me strength is watching my children grow.
My four-year-old daughter gives me endless reasons to feel proud. She is incredibly smart and observant.
My son, despite his Down syndrome diagnosis, is capable, determined, joyful, and full of life. He develops at his own pace, loves music, and dances whenever he can.
Physically, I feel well during this pregnancy, so I spend a lot of time with my children. My partner is a huge support — carrying our son up and down the stairs, heating the house, caring for the animals, providing financially. His mother cooks for us.
My main responsibility is the children and basic household tasks. On the surface, it looks like a low-stress life.
What shadows it are the past experiences — with medical professionals and with people who didn’t choose their words carefully.
The lack of trust remains. I don’t know yet how — or if — I will fully overcome it.
For now, I take one day at a time.
Tomorrow, my son and I go swimming and to physiotherapy. Over the weekend, we’ll watch a dance performance as a family. The rest of the time, we stay home, slow down, and live quietly.
That is enough for now.
Even with everything that hurt, this life — with these children — is still deeply worth living.
You are not alone in this.
If you would like to go deeper, you can buy the e-book Our Journey – A Different Path for honest reflections and lived experience beyond this post:
https://payhip.com/b/c9s3b
You can also purchase supportive routine templates designed to help parents and children navigate daily life with more clarity, structure, and understanding:
https://payhip.com/b/RYA65
Leave a Reply