Today, Mikael is deeply grateful.
Because Kaya has given him a completely different set of values, which is about the joy of helping others – and the ability to create excitement.
– Charlotte and I still have ambitions. But Kaya has just completely changed the way we see the world, says Mikael Espensen and adds:
– Today I have a guilty conscience that I would have completely cynically chosen Kaya if the screening had shown that we were expecting a child with Downs.
Mikael has always loved children
Mikael Espensen has always dreamed of having children.
In an inner film, he has imagined how he would have to teach his children to cycle on the village road with bird whistles and summer sun. First with support wheels – and then without.
But it wasn’t to be like that.
Suddenly, Charlotte went into labor and Kaya was born prematurely.
They were therefore admitted to Aalborg University Hospital’s neonatal department.
At the time, Mikael and Charlotte had no idea that their newborn daughter was different.
It was almost a week before the doctors came and said they suspected Kaya had Down syndrome.
The message came like a bolt from the blue.
The family lives in the Aalborg district of Vejgaard. Photo: Henrik Bo
Mikael and Charlotte had been offered scans during the pregnancy.
But the samples had looked fine.
Since 2004, all pregnant women have been screened for irregularities.
A nuchal fold scan that can reveal chromosomal abnormalities in early pregnancy as well as a malformation scan later in pregnancy.
And it was therefore completely unexpected that Mikael and Charlotte should have a child with an extra chromosome.
The message hit hard.
– The first month was a grieving process. We had the idea of how life was supposed to be torn apart. We were both in deep sorrow, says Mikael.
Charlotte in particular was depressed.
Mikael found comfort in the idea of the alternative.
– I said to Charlotte: “You should know that I am still happier now than I was before we had a child”. That thought helped us both a little further, Mikael recalls.
The turning point was a conversation with a nurse.
According to Mikael Espensen, she made them aware that Kaya did not know about the expectations her parents had had – and that their daughter would have a good life with joy and laughter.
– It hit us. Because in one way or another it was enormously selfish to sit there and sulk about the fact that one’s own dreams were not going to come true, says Mikael Espensen.
Because, admittedly, Kaya could – and still cannot – do the same as her peers.
On the other hand, Mikael and Charlotte’s lives have become richer in another way.
A life of small victories
After three weeks in the neonatal unit, Kaya came home. Mikael and Charlotte quickly discovered that life with a baby with Down syndrome is full of the same small joys as other new parents.
– She had to be fed, changed and cuddled – and we got up at night like all other parents. It helped us to normalize our everyday life, says Mikael and adds:
– And then Kaya was an easy child.
The family consists – in addition to Kaya and father Mikael – of younger sister Rosa and mother Charlotte. Photo: Henrik Bo
But there were also times when the differences became apparent.
Mikael went to baby swimming and remembers an exercise where you had to lift your baby out of the water with one hand.
– All the other children had the stiffness in their bodies that small children have. But Kaya folded up like a grilled chicken on my hand, Mikael laughs fondly.
In terms of development and motor skills, Kaya has taken things at her own pace and, for example, learned to walk late.
In fact, Kaya was so late that she was overtaken by her 14-month-younger little sister, Rosa.
Both Kaya and Rosa are going to secondary school next year. Photo: Henrik Bo
But even though life with Kaya has required adaptation and adaptation, it has also given Mikael a completely new way of seeing the world.
A new view of the world
Mikael, for example, envies Kaya for her ability to be in the present – and not always on her way to something new.
A visit to the grocery store is a typical picture of what Kaya has taught him.
On the way there, Kaya discovers things that she dwells on. A flower that she must smell. A person she needs to greet.
– Far too many times I’ve caught myself rushing her and saying: “Come on, let’s move on.” But damn she’s the one who’s got it right, says Mikael and adds:
– We should all stop and smell the flowers. Because the adventure can easily lie right there. Kaya has an immediate way of facing the world that is extremely inspiring.
According to Mikael, Kaya radiates a joy that is hugely contagious.
– Of course it is expensive for society to have someone like Kaya, but other things are also expensive for society. What if we could screen for drunk driving – or what about those who end up in the Luxury Trap, says Mikael Espensen, who is the father of 17-year-old Kaya. Photo: Henrik Bo
– She belly laughs every single day – from the heart all the way down to the stomach muscles. When was the last time you did that, he asks.
Mikael Espensen sometimes thinks that his daughter might actually have a better life than he himself.
– There is always something she is looking forward to. She gets excited in a way that the rest of us can learn a little from. If we hadn’t got Kaya, we wouldn’t have noticed that quality.
Therefore, Mikael Espensen also cannot help but look at the ethics of judging certain people.
– What is the background for this? Is it economics? Because having someone like Kaya costs society, of course, but there are so many other things that also cost society, says Mikael Espensen and adds:
– What if we could screen for drunk driving – or what about those who end up in the Luxury Trap. It would also be smart for society.
Kaya has a special ability to feel moods and create love around her. Photo: Henrik Bo
Mikael Espensen thinks that there is an enormous paradox in seeing how good a life Kaya lives – and then the thought that she should never have been born.
Line Natascha Larsen has the same reflection.
She is chairman of the National Association for Down’s Syndrome – and has a 13-year-old son who also has Down’s.
Line Natascha Larsen talks about a research study on the experience of quality of life for people with Down syndrome.
It shows that 99 percent of respondents with Down syndrome report that they are satisfied with their lives.
– This is far higher than many other groups, and it puts the discussion about whether people with Down syndrome can have a good and dignified life into perspective. It gives us important knowledge as a society, and is something we should reflect on.
Line Natascha Larsen is concerned that diversity in society is disappearing.
Down syndrome
What is Down syndrome
Down’s syndrome is a form of developmental disability which is associated with, among other things, a cognitive impairment and that some features of the appearance are different.
Down syndrome is caused by a chromosomal abnormality on chromosome 21.
The frequency among newborns was previously 1:700 per live births, and the number of children born with Down’s syndrome was increasing for several years as the average age of pregnant women increased.
After the health authorities introduced the national offer of prenatal diagnostics for all pregnant women in 2004, the number of births for children with Down’s syndrome has fallen significantly. The vast majority choose abortion when Down syndrome is detected prenatally.
From 2003-2005 there were approx. born 100 children per year with Down syndrome, and from 2006 to now the number has dropped to 21-34 children per year.
It is estimated that there are around 2,000 people living with Down syndrome in Denmark, but the exact number is not known.
Source: National Down’s Syndrome Association
With the introduction of fetal diagnostics for all pregnant women in 2004, the birth rate for children with Down’s has fallen significantly.
– Of course, parents must make the choice that is right for them, but from a more general societal perspective, I think we should think carefully, she says and elaborates:
– Because we, as a society and people, can easily exclude those who do not fit into a very narrow concept of normality.
Seen from her chair, it is not unthinkable that in the future we will see a society completely without people with Downs, because the technological development and the spread of prenatal tests will be better – and more extensive.
In its extreme consequence, it can lead to a development where those who do not fit in – and who are considered an economic burden on society – are sorted out.
– It’s scary to think about, says Line Natascha Larsen and adds:
– If we as a society accept that a whole group of people disappear, what does that say about our view of humanity and our view of what is worthy? And what consequences does it have for our society now – and in the longer term?
The future with Kaya
In Vejgaard, Kaya has just turned 17, and Mikael and Charlotte are preparing for the next step.
This summer, Kaya is going to post-secondary school – and in a few years she will probably move away from home and live somewhere where she can get help and support.
– Of course she has to move away from home one day. But the most important thing for us is that she gets a life where she has someone to eat dinner and watch TV with. A life where she is not alone, says Mikael Espensen.
He is well aware that people like Kaya are a financial burden on society, but he is adamant that Kaya gives something back.
She has a special ability to feel moods and create love around her.
– Kaya has enormous empathy. She can walk into a room and immediately sense if someone needs help, he says and adds:
– I can see the effect she has on her surroundings. Not just on our family, but on everyone around.
– Imagine if Kaya had not cheated everyone – and had been one of the fetuses that had been caught in the screening, says her father. Photo: Henrik Bo
Mikael openly admits that life with Kaya has changed his perspective to that extent.
– Kaya has given me a new set of values about creating joy and doing something for others, he says.
Life with Kaya has given Mikael Espensen the desire to help others.
Therefore, he has also changed course in terms of work.
Together with Charlotte, he helped found the advertising agency Weltklasse 20 years ago, but now they are out of the company.
Instead, they both work for Lykkeliga, which is a handball league for developmentally disabled children and young people – founded by Mikael Espensen and former national team player Rikke Nielsen.
If Mikael Espensen looks back on the time before Kaya, it is a completely different direction than he had imagined.
– But it makes SO much sense to help run a community for these children and young people.
When Mikael looks at his daughter, he has no doubt:
Imagine if Kaya had not cheated everyone – and had been one of the fetuses that had been caught in the screening.
– The world would be poorer without Kaya. She is a gift. Not just for us, but for everyone she meets.
2024-12-08 18:46:00
#Father #child #Downs #Kayas #life
How do the perspectives of individuals with Down syndrome, their families, and disability advocates intersect regarding the value of inclusion and diversity?
The text expresses the opinion that people with Down syndrome deserve to live full and meaningful lives. It cites a study showing that 99% of people with Down syndrome are satisfied with their lives.
Line Natascha Larsen, the chairman of the National Association for Down’s Syndrome, warns against a future where prenatal testing leads to the elimination of people with Down syndrome, arguing that this would be a loss for society and reflect a narrow definition of what is considered “normal.”
The article highlights Kaya, a 17-year-old with Down syndrome, and her family’s preparations for her future. Her story demonstrates the love, support, and unique contributions that individuals with Down syndrome bring to their families and communities.
