Showing posts from 2017

Dear Santa

There is someone I would like you to meet. Last year she was not home for Christmas. My baby was in hospital, so I am not sure you’ve heard of her yet. She is a very sweet little girl, with a lot of courage, perseverance and a lust for life. She is a real fighter and has definitely earned a spot on your Nice List. Her name? Bommel! 


Almost five years ago our search for a diagnosis for Bommel started with a doctor saying: “We suspect she has Down Syndrome.” It turned out that that was not the case. After many other medical detours and tests, we finally participated in the whole-exome sequencing DNA test. This test has 20 – 30% more chance of finding a diagnosis. However, in our case, no diagnosis has been found…

Dear Fiene

When I came to pick you up from school, you rushed over to your teacher. You told her that your little sister Bommel had come to pick you up and you were glowing with pride as you stood beside me & her. To anyone that passed us in the schoolyard, you said beaming: “This is my sister!” That moment made me realise that you deserve to be put in the spotlight. So, this is my letter to you…

14 things that become normal when you have a special needs child

Things that, if you think about them, are actually quite abnormal, become normal when you have a special needs child. In our case with our daughter, I didn’t really notice it happening. However, abnormal has become my new normal...

Airway Defects Day - a Dutch story

Like a lot of Dutch babies, Bommel was born at home. The delivery went so fast that, even if we would have wanted to, there wasn’t any time to go to the hospital. If I had known then, what I know now, I would have done it differently – if I could have. But that’s just it: I couldn’t have. Because an airway defect still doesn’t show on a ultrasound. And there is no prenatal screening that could have given us a hint of what was coming… 

How I became a Special Needs Mom

“Well, she is quite the little mover, isn’t she! That’s a rare sight at 36 weeks.” That is what the midwife said, during the final ultrasound. Everything was fine. With me and with our baby girl. She even stuck her tongue out, which we thought was very cute. Little did we know...