Strong story
Living with trisomy 21
“My daughter is more than Down syndrome”
Strong women: Tilda (4) and Lara Mars
© private
The little daughter of BRIGITTE.de reader Lara Mars has trisomy 21. Here the mother tells how wonderful their life together is.
“Did you know that beforehand?”
I keep asking myself what exactly is so important about the answer to this question for my counterpart. Does he want others to praise me for my courage because I made a conscious decision to have a child with a disability? Or sigh derisively because I did it and think: “It doesn’t have to be like that these days”? Or pity me for not knowing? Find out how safe prenatal testing really is? Or is it just the uncertainty of not knowing what else to ask? Either way, I’m really tired of the question.
What difference does it make?
My daughter (4) is here. She is wonderful. She’s not Down’s Syndrome. She’s a curious, very funny, and extremely social little person who finds combing her hair downright silly. She loves pretzels and pasta with tomato sauce and likes to watch TV. Yes, she has Down syndrome, also known as trisomy 21. She has 47 chromosomes because her 21st chromosome is there three times. Neurotypical people only have it twice and therefore only 46 chromosomes in total.
And yes, it has an impact on their lives and also on the lives of their parents, but for us it’s all completely normal. It’s normal that we go to therapies, sometimes use signs to communicate and have more doctor’s appointments than most of the other children in Tilda’s daycare group. None of this changes the fact that we could no longer imagine life without our wonderful daughter.
I would like to know how nice it will be
After her birth in 2018, when we received the diagnosis, I would have liked to have looked into that future. Would have liked to see how wonderful our lives will be. I would have liked to have all those stigmatizing images pushed aside by those that have been ingrained in my mind forever for the past four and a half years.
At first I thought I was completely alone in the world with this. Sometimes I sat in the living room, stared out at the night, and wished that no other woman had to feel as alone as I did. Even when I was alone in the hospital room after the birth, my child in the intensive care unit, my husband at home – I would have wished for someone at my side. Another woman, a mother like me who knows how it feels. Who understands my thoughts, feelings and sadness.
We grow into what is given to us
Today I know that many women feel the same way. The booklet “From Mother to Mother” gives some of them some stability today when the world becomes bottomless for a moment. I launched this booklet in 2020 with the help of six other mothers. In it are letters from mothers and also from fathers to themselves when they received the diagnosis. Written with the knowledge of months or years later. With the knowledge of how it really will be: It will be good! Different than expected, but good!
In April 2022, I founded the non-profit company “lavanja” with my business partner Tanja, which offers low-threshold knowledge on the topic and networking. Also in 2022, my book “A wonderfully different life” was published, in which 22 parents have their say. It was a year full of “Trust yourself” and cliff jumps into unknown waters. But that’s how my daughter taught me: We grow into what we are given There are no certainties, but plenty of opportunities that life gives us and that we can seize.
The picture on Tilda’s birth card shows a little girl who weighs barely three kilos in a shirt that is much too big. Her shirt says “I will change the world”. Oh yeah, baby you do. We do. And I can’t tell you how proud I am to be your mother and to walk through this wonderfully different life together with you.
© mvg Verlag
The author: Lara Mars, part-time marketing manager, will give birth to a daughter with Down syndrome in 2018. In 2020 she started the “From mother to mother” project. Together with Tanja Thalwitzer she founded the non-profit company in 2022 lavanya, which supports families of children with disabilities, and publishes the book “A wonderfully different life – how my daughter with Down syndrome changes my view of the world” (mvg Verlag, 18 euros). She lives with her husband and child in the Rhineland.