Isabel

 

Isabel was born in 2015, as many of you know. As family we have walked a 5and a 1/2 year journey of doctor's visits, not because she is sick, but because she was just not growing at the same speed as the rest of our children. Many adventures over the years- operations, drowning incidents, beautiful testimonies- enough to fill a small book. Our hope was that in America we would find the answers we were looking for, and had already started on the tedious journey of seeing specialists when the doors on our immigration process would just not budge. I believe God lead us to the Netherlands in this way, since we have never had the courage to try and live here. Not because it is bad in any way, but living in Africa and then moving to Europe without any specific plans was an insurmountable ...well, mountain. We were forced, but I know that it was God-lead.

Another long story short, we finally were able to do genetic testing, without landing on the street financially. And they found a result. Isabel was diagnosed with a Rare Genetic disease called DYRK1a, charming I know, think I could have improved on the name;) It is just amazing how it explains every single one of her 'differences'. She has a tiny head (called Microcephaly), funny ears (straight from Star wars, or is it Star Trek), lots of fever convulsions, no speaking, slow mental development, autistic traits, and even her love for water. It is amazing, like we opened a door into another world. A sense of arriving somewhere, after being on the road for a very long time. A new group of people to help us know that we are not alone, but one of four hundred families so far diagnosed with this rather new diagnosis.

It brings along the necessary need for acceptance: this is not a short term disease that will be cured by a magic pill. This life was written on her DNA- a God-message, this is how this specific little angel is going to look. Nothing to change, just to develop into the little flower we always knew she was. It has changed the dynamic in our home for the better, made us all softer, more attentive and patient, more of a team. We can only enjoy today, because tomorrow is a picture that we do not design, can't even know what to expect, we can only colour it in, in loving colours.

Isn't that true for any child though?