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’re 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 brings that extra dose of happiness and love into your life, too.

This time: Katharina, 36, lives with her husband, René, and their two children near Cologne. Her daughter Sonea, 8, has a little extra: she has Down syndrome. Normally, Katharina blogs 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 truly think the International Family Day campaign is wonderful. That’s why it was a given for me to contribute to the series with this post and share what life is like with my daughter Sonea.

We spent the first day of my daughter’s life as a completely normal little family. It felt unfamiliar, but beautiful, and I brushed off the strange, restless feeling that something was wrong as hormones. That first night, with the tiny baby cot parked close to mine and my hand resting on my daughter’s tiny fingers, I dozed off—too excited to fall asleep properly—until I was torn from my idyllic family dream the next morning. It was the pediatrician’s harsh words as he came to draw blood from my little daughter: "...Oblique eye positioning. Four-finger furrow. Suspected Down syndrome." Those words knocked the ground out from under my feet and sent me crashing down. It was only a suspicion; a rapid test was meant to bring certainty in a few days, but suddenly it 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 for that night with my enchanting daughter without Down syndrome.

It took me a while to get used to the adventure 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 soon faded. Alongside playgroups, music classes, and baby swimming, our daily life was filled with physiotherapy appointments 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, almost 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 can’t be compared to other children. Through Sonea, I’ve learned not to be so focused on achievement. You don’t always have to be good at everything—or better than others. Everyone has strengths and weaknesses.

Vincent is learning many things on his own now, sometimes even in his sleep, and at times it feels bitter for Sonea. There are often disagreements between the children—completely normal among siblings, and yet so exhausting. And I often think it must frustrate Sonea that her little brother can suddenly do things better than she can. She is very aware of this. And when I look closely, it’s really a constant learning process. In this, Sonea is at least as good a teacher for her brother as he is for her. I believe her brother wouldn’t be nearly as empathetic if it weren’t for his sister.

The fear during the second pregnancy

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

This fear haunted me throughout Sonea's brother's pregnancy, too. Even though the doctors assured me that this lively little guy in my belly was completely healthy, I found it hard to believe. I don’t think it would have changed anything if he had also had Down syndrome, but I simply wished for a bit 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 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’re fortunate that my mother-in-law supports us amid the chaos of everyday appointments.

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 found my current job, and for the past year and a half, I’ve 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 also one that fits perfectly 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 I can’t even begin to understand until 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’s her big plan for the future, and I have no doubt that she will somehow make it happen. Unfortunately, she is often underestimated—not only by other people, but also, time and again, by ourselves. But I’m 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 their parents until the end of their life is outdated and should definitely be erased from people’s minds.

I wish that our society were more open to people like Sonea, and that these individuals had the 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 more opportunities for an independent life. There is still plenty of 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. Sonea would no longer be Sonea without Down syndrome. But she is not Down syndrome; she is first and foremost a joyful eight-year-old girl with a love for Bibi and Tina, horses, music, and dancing—plus lots of glitter and donuts. Eight years ago, I would still jump out of bed every morning, hoping 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 faded into the background. In everyday life, we often forget it’s even there.

In recent years, I have learned so much about life. Parenthood has changed my husband and me—and also, and especially, our daughter. We have started to reorder our priorities in life, and our perspective has shifted. Today, we are very grateful for that, and for our family, with each of us just as we are.