After having seven children, the Weeber parents decided to become foster parents. Thus their loving, protective family accommodated three children with Down syndrome. Now, from a sibling’s perspective, we get an insight into what children with Down syndrome are like.Written by Dorottya Kolbl-Weeber.
What’s a person with Down syndrome like?
In essence, just like anyone else. As a baby, they eat, sleep and cry, later they get defiant, slamming the door on us as a teenager, then falling in love…
Every person is different. Children with Down syndrome are born individuals, too. They aren’t as different from us as we would think. Of course, there are a lot of skills that are more difficult for them to learn than for their peers with unhindered development. Their emotional intelligence, however, is extraordinary.
Down syndrome is one of the most common congenital disorders
It’s a syndrome caused by the erroneous division of a chromosome, and it’s characterized by mental disability. Out of the 46 chromosomes (23 from the mother, 23 from the father), the 21st has and extra copy (mosaic Down syndrome is when not all cells exhibit trysomy 21). The extra chromosome often causes heart problems, muscle hypotonia, thyroid dysfunction, and gastrointestinal disorders. Characteristics of people with Down syndrome: slower mental development, low muscle tone, loose joints, stunted growth, short limbs, characteristic facial features (small nose, flat nose bridge, distinctive blush, small ears, slanted eyes).
My parents belong to those few who chose children with Down syndrome. After having seven healthy children of their own, it happened that they became the foster parents of three children with Down syndrome. Since it was their choice, our family is quite different from average families with children with Down syndrome. One of the sons of my father’s sister, little Péter may have been the angel who linked our family to the fates of Máté, Evelin, and Julcsi. Little Péter was born with Down syndrome and severe heart problems. He was a happy, cheerful little boy, and during his three years on this Earth, he changed a lot of lives for the better.
Máté, Evelin, and Julcsi came to us with different family backgrounds. Their parents wanted the best for them, so they ended up with us. I was 15 when Máté was born, and I have little memory of the feelings that swirled in me. But my older brother’s reaction keeps getting mentioned ever since: „It’s emotional blackmail to make us choose between having someone come to us or not even letting them be born.” And there’s truth to this, yet our parents asked for our opinions.
In any other case, upon the arrival of a healthy sibling, how many parents ask for the opinion of their children?
It’s the parents’ decision and responsibility to have a child, not the older siblings’. This should always be respected, and parents should be trusted to have made a judicious decision, with the aim of benefiting the whole family. By the time Evelin arrived, all three of my older siblings had gone to university in the countryside. Therefore, I had to help out more at home, while I also had to perform in school. Even though it wasn’t an easy period, I benefited tremendously from it (although back then I had no idea that I’d made huge strides towards my profession). The arrival of Julcsi was more of a surprise, and it probably triggered the most powerful emotions in me. Despite (or maybe because) I was a mother by then and we were planning our second child. It was during this period when I most strongly felt the need for my mother’s support, and even as an adult, I became really jealous. I had to confront my own ego, because the question came up again: „Should a helpless newborn live her short life in a hospital, or in a loving family?” (Her life expectancy was maximum three months, now she’s three and a half years old.) The heart and the mind can easily get into conflict over something like that. Everyone needs a loving family, of course, but why does it have to be MY family (again)?
I know, for some this seems selfish. For others it’s a natural reaction. And that’s exactly the point: it’s both! Having to challenge these feelings and to work on them, that’s the thing that shapes us.
So what’s it like to have one-two-three Down siblings?
Whenever I’m asked about my family, I always tell that I have six full siblings, and then three more. When I go home to my parents, Máté and Evelin greet me with hugs. They love me for who I am, what I can give is enough for them. They’re grateful and happy.
Máté is a teenager now, and it’s strange to see how grumpy that little sweetheart has become. He loves to dress up, he’s like a refined gentleman. He would put on a suit even on the hottest summer day, along with a hat and a retro suitcase, of course. He’s learning to read with great effort, he gets on with people very well, and he adores animals, especially dogs.
Evelin loves to watch herself in the mirror. She’s pleased with herself, and learns easily. With her strong will, she’ll be able to thrive in today’s tough world. Julcsi came into the family when I wasn’t living there anymore, so our connection is less deep. Besides, I didn’t dare to attach to her to protect myself. I was, I am, afraid that I could never get over seeing such a tiny person – Her – dead. I don’t think it’s possible to be ready for that. Since she’s been part of our family for three and a half years now (and we’re talking about a cheerful, persistent toddler), I’m sure it’ll be hard to see her go. When I meet her, I cannot see and cannot feel how ill her heart is. Most of the time I only see two perky little girls, my daughter and my sister, playing (usually there are much more of us around, of course, but they’re so close in age that they play together a lot). Fear never rears its head during these times. Sometimes it just comes in a flash, and wedges itself into my thoughts. It asks questions I don’t want to find the answers for. Not for a long time.
Finally, in a wider perspective:
Down families, including us, also share a common fate. My experience is that parents tend to blame themselves for their child’s genetic disorder. The birth of a child with congenital anomaly always triggers a process of grief that needs to be overcome (I can’t even imagine the superhuman strength this takes!). Anyone who offers a few kind words or a smile can help overcome this grief. The parents of a healthy child hope and strive for their child to be happy as an adult. A Down child is happy by nature; their parents worry about social rejection day after day. This can be alleviated by acceptance experienced in everyday life. Any child who is accepted and allowed to blossom can be successful.
Source of featured image: Rita Bocskai
Translated by Ádám Hittaller