Mom, Dad, child, and child with a little extra

On International Family Day on May 15th, LILLYDOO wants to celebrate family. Because family is one of the most beautiful and important pillars in life. But not all families are the same. And that's a good thing! Five families – representing the enriching diversity of families that exist – have given us insight into their lives. We are excited to share their fascinating and very personal stories with you here. Maybe you'll see yourself and your family reflected in one or two places? But even if your family looks very different, it surely also brings that extra dose of happiness and love into your life.

This time: Katharina, 36, lives with her husband René and their two children near Cologne. The little extra belongs to her daughter Sonea, 8: She has Down syndrome. Normally, Katharina blogs on about her completely normal family life. Just different. Today, she gives us an insight into her life with a child with Down syndrome.

LILLYDOOs I really think the action for International Family Day is great. Therefore, it was a given for me to contribute to the series with this post and to share about life with my daughter Sonea.

The first day in my daughter's life we spent as a completely normal little family. It felt somehow foreign but beautiful, and I simply dismissed this strange restless feeling that something was wrong as my hormones. So I also spent the first night, the tiny baby cot parked close to mine and my hand resting on my daughter's tiny fingers, dozing off and yet too excited to fall asleep properly, until I was torn from my idyllic family dream the next morning. It was the harsh words of the pediatrician, who came to draw blood from my little daughter: "...Oblique eye positioning. Four-finger furrow. Suspected Down syndrome." These words knocked the ground from under my feet and made me fall deep and heavy. It was only a suspicion; a rapid test was to bring certainty in a few days, but it suddenly seemed so obvious. Why hadn't we seen it earlier? Why hadn't it been noticed in prenatal diagnostics? In retrospect, I think there were indeed signs, and I believe I secretly suspected it throughout the pregnancy.

Over time, the "Why" turned into a "What a happiness"

Today I am very grateful for it. For this pregnancy with my completely healthy baby and that night with my enchanting daughter without Down syndrome.

It took a while for me to get used to this adventure that was ahead of us. My husband found it much easier. Or perhaps he simply didn't show it as much. Sonea quickly made sure that all the fears, worries, and sadness would soon disappear. Besides playgroups, music classes, and baby swimming, our daily life was filled with appointments at the physiotherapy and visits to early intervention services. There were times when it was almost unbearable for me to see how easily other children caught up with Sonea and seemed to learn all these things overnight and in their sleep. Developmental milestones that were a huge hurdle for Sonea, other children achieved with playful ease. But at some point, I realized that Sonea is simply who she is and not comparable to other children. Through Sonea, I have learned not to be obsessed with achievement anymore. You don't always have to be good at everything and better than others. Everyone has their strengths and weaknesses.

Vincent is learning many things on his own today, even in his sleep, and sometimes it feels bitter towards Sonea. There are often disagreements among the children. Completely normal among siblings and yet so exhausting. And I often think that it surely frustrates Sonea because her little brother suddenly can do things better than she can. She is very aware of this. And when I look closely, it’s basically a constant learning process. In this, Sonea is at least just as good a teacher for her brother as he is for her. I believe her brother would not be nearly as empathetic if it weren’t for his sister.

The fear during the second pregnancy

After Sonea's birth, we had a human genetic testing done due to the inherited translocation trisomy, and although we were aware of the possibility that one parent could be a carrier of this translocation, it hit me quite hard when I found out that I am actually a carrier. Suddenly, there was an increased risk of further pregnancies with Down syndrome and the fear of what it would be like.

This fear haunted me throughout Sonea's brother's pregnancy as well. Even though the doctors assured me that this lively little guy in my belly was completely healthy, I found it hard to believe it. I don't think it would have changed anything if he had also had Down syndrome, but I simply wished for a piece of normality. I only realized how normal our life had been before the birth of my second child after he was born. The developmental milestones came faster and required less preparatory work, but our family life did not fundamentally differ from that of other families.

In everyday life, we lead a (for us) completely normal family life. Sonea attends the second grade at an inclusive regular elementary school. She has a school companion who supports her in her daily school routine. Hobbies and therapies are integrated into our daily life. We are fortunate that my mother-in-law supports us amidst the chaos of appointments in everyday life.

Thanks to Sonea, I discovered my passion for sewing. When everyday life gets hectic, a little break at the sewing machine is my yoga. Through sewing, I then found my current job, and for the past year and a half, I have been working from home, handling marketing and social media for a major fabric manufacturer. Not only have I found a dream job that fulfills me completely, but one that is also perfectly compatible with our family life.

I love my daughter's perspective on life. She is so unbiased and enjoys life to the fullest. Every day she starts anew, usually with an enthusiasm that I can't even begin to understand after the first cup of coffee. The people Sonea loves will have a place in her heart forever.

When Sonea is grown up, she wants to work in a hospital. That is her big plan for the future. And I have no doubt that she will somehow make this happen. Unfortunately, she is generally underestimated. Not only by other people, but also repeatedly by ourselves. But I am quite sure that Sonea will find her way and live in a supervised group home when she becomes an adult. The image of the eternal child, who lives with his parents until the end of his life, is outdated and should definitely be erased from people's minds.

I wish that our society would be more open to people like Sonea and that these individuals have a chance to follow their path and realize their potential. Thanks to today's support and therapy options, people with Down syndrome have a significantly better quality of life and opportunities for an independent life. There is still much room for improvement in society, but overall we encounter a lot of openness, and the reactions to Sonea and us as a family are predominantly positive.

If someone asked me today whether I would wish that Sonea did not have Down syndrome, I honestly couldn't really answer the question. Sonea would no longer be Sonea without Down syndrome. But she IS not Down syndrome; she is primarily a joyful eight-year-old girl with a love for Bibi and Tina, horses, music, and dancing, lots of glitter and donuts. Eight years ago, I would still jump out of bed every morning, hoping that this nightmare would finally end and that my daughter would be a completely "normal" baby without Down syndrome, but after these eight years, Down syndrome has almost disappeared. In everyday life, we often forget that it is even there.

In recent years, I have learned so much about life, and not only has parenthood changed my husband and me, but also and especially our daughter. We have started to reorder our priorities in life, and our perspective has changed. Today, we are very grateful for that. And also for our family, with each of us as we are.