Beauty in Down Syndrome- a Father's story

We have had the privilege of sharing over 100 stories of moms receiving a Down Syndrome diagnosis either prenatally or at birth. However, it is the dads that sometimes really need to be heard from. The silent partners that sometimes don’t share their perspectives as they remain strong and silent. Other dads need to hear it too though. Here is one dad willing to share…

It’s a beautiful day…

It was a beautiful day. Sun was shining, temperature was nice, we were full of energy. Ready for the prenatal screening, a normal check after 20 weeks of pregnancy. As usual I was offered a chair, somewhere at the feet of my wife. So far so good, we were joking, looking at the tiny human jumping around. The tiny human that came as a huge surprise. But not for a moment we were shocked – we were thankful and happy right away. Somewhere halfway the appointment I started to notice something wasn’t right. The sonographer became more and more quiet. The temperature seemed to drop. After moments of silence, she started talking again.

“There seems to be something wrong. I can’t see the connection between the ventricles in the baby’s heart. I have to send you to the hospital.” Our joy had vanished. Tears came. So far we had lived the perfect life. Happily married, blessed with amazing, healthy twin girls, another healthy and happy boy, doing jobs we love, doing things we like. I asked: ‘did you not see it, or isn’t it there at all.” After a couple of long seconds she answered: “It isn’t there. But it’s reconcilable with life.”

…don’t let it get away….

We cried for minutes, outside, hugging and hope returned fast. We had to pick up our kids, who – as always – were loaded with joy. The next day we went to the hospital, where the specialists looked at our baby. A new world opened for us, being at a children’s hospital. After the ultrasound we had to wait for a team of specialists to tell the results. They were clear. Our baby had a huge hole in his heart. But: it looked good, and it is something which can be fixed with great chance of healing. So far so good. Then the cardiologist was quiet for some moments and she said “well, there is something else with these heart defects. There is a 50% chance your baby has Down syndrome too, as this heart defect is one of its markers.”

I faded out, my mind turned into fog until the cardiologist, somewhat uncomfortable, put her hand on my shoulder for a second.

The next day we decided to go for clarity and requested an amniocentesis to find out if it was true.

…sky falls.

We had a tough week ahead. To be honest: I didn’t know anything about down syndrome. Well, I knew about the cute people on television. They seemed cute, but also people that you could really connect with, somehow. Either way, for us they were people far far away, you saw them once in a while somewhere. But never ever could I picture one of those people being my son – yes, we found out it was a boy. The next week we got a phone call. Our fear had become real: the boy had trisomy 21. This time it felt like we literally collapsed because of the worst earthquake ever. We felt as if our lives had ended. Unless, of course, we decided to end the pregnancy.

“Grace finds beauty – in everything”

It crossed my mind a couple of times. It would not be fair to our other kids to have a little brother who would suck up all attention. It would be the end of our marriage – this weight was something we could not carry. And a little boy with a huge heart defect and Down syndrome wouldn’t really have a happy life, right? But these thoughts didn’t last long. In fact, we had such an amazing time together, and with friends and family. Intimate talks, opening up our hearts, sharing our doubts and vulnerabilities. It was a time of many tears, laughter, and growth. And slowly but surely, love won. Love for each other, for our girls and boy, and of course our baby boy. Happiness returned. And yes, frequently happiness got covered by clouds and fears.

“This is not a burden. It is an adventure!”

And then the new year started, with a huge bang. All of a sudden Victor Judah was born, three weeks early. Our warrior. A very smooth birth. A little baby, crying loud, healthy color, huge testicles, 10 fingers, 10 toes. A perfect baby. After three days we got to go home. Our adventure had started. And boy- did we learn a lot. We had to work hard, just like with the other kids. Victor seemed to be the pee master, peeing almost every time when we opened his diaper. Victor amazed us, amazed the doctors, amazed everyone who visited him. This boy has something special. He is pure, and pure joy. Most things I thought to know about people with down syndrome were just wrong. Victor is in most ways just like anyone else. But look him in the eyes and you meet an angel. It is like heaven opens up. It is like he is saying: “just be yourself, and love me with all you have. I am worth it – and I love you anyway.” Victor has learned me to love unconditionally. Raising kids is more about helping them find happiness, and less about what I think what makes them happy. So Victor became quite the teacher for me. We learned to slow down, live by the day, and enjoy the little gifts we are given daily.

Of course there are some tough battles to fight with Victor. Like when Victor caught a virus, only a few weeks before the open heart surgery. It was too much for him – and he had to stay at the ICU for weeks. We saw lots of nurses and doctors. I could write pages about them – some really loving and caring, and some less understanding. But our experience at the Intensive Care was somehow beautiful. Walking side by side with parents standing next to their kids who fight for their health creates unexpected bonds. It makes you look different. And to bring your child for a 6 hour surgery, knowing they will cut his chest open, and stop his heart from beating is hard, the hardest thing I ever did. But great is the Victory when you get the call: surgery is done, it was successful. Even greater is the Victory when your boy opens his eyes. Smiles at you. Gets to go home with you. Enjoys vacation. And grows, learns, laughs louder and louder. It heals us probably even more than him.

“T21 babies looking for dads willing to fight for them, for the right to exist”

There was a time I thought that I had to be an advocate for Victor, for the weaker human. Now I see Victor is his own advocate. But I need to be his dad. A dad that fights for him. That battles the stigma. That opens eyes, hearts and doors so other people stop discriminating and see the human Victor. The boy with special gifts, who happens to may have a few special needs. I know most fetuses with down syndrome are not born. It is our mission to fight the elimination of gifted people with T21. I hope to inspire dads-to-be (and moms) not to fear if they get the diagnosis down syndrome. That the voices full of stigma and false information get drowned out by voices of loving parents and their amazing kids. I hope to find lots of dads fighting by my side for the future of special kids. Making way for stories of unconditional love, of faith and victory. Opening the eyes and hearts of people at governments, and hospitals. Showing them it is not ok to erase people just by misjudgment, and be silent about it. I won’t accept that I am part of a generation that willingly choose to erase a whole group of special people. Let’s show all the couples receiving this diagnosis: life will not end! It might change, but let’s show them that with great battles come even greater victories. It will change your heart, your relationships, your way of living – in a beautiful way.

“You may say I am a dreamer”

Living with Victor makes us dream. About his bright future, with many victories. And about our future as a family. We started dreaming about having a huge house, with lots of space, surrounded by land. A place where we can create space for people who are tired of all the stress and the performance related pressure. Maybe hunted by questions, maybe the victim of stigma’s themselves. In that place we want to share the wisdom from Victor. Where through Victor’s lessons people can find rest, and learn to love unconditionally. Call me a dreamer (to afford such a place we need to win at least the lottery), but until that day we will share the lessons, the hard lessons, the lessons of love and exceeding joy with the world. We see Victor touches lives, opens hearts. Let him be an example.

Victor was fearfully and wonderfully made. And yes, our road has more bumps. But with the bumps comes way better views – and for that we are deeply thankful.