As if the diagnosis alone isn’t life changing enough, as a parent of a child with a disability, syndrome or rare disease you are constantly making decisions. Sometimes small but more often these decisions implicate big, important, radical changes. Last year I decided to leave the company I started in 2008. Me, always the ambitious and venturous one, took a serious step back. Running a company with all that was going on at home was simply too much. I felt like I let everybody down all the time, at work and at home. I longed for more time with my son and family. I wanted my freedom back. Still, I loved my job. Now, as a freelancer I am in control of my own agenda. I choose the people and the projects I work with very carefully, leaving enough room for Jackson. It was not an easy decision to leave my company, but I am happy I did and thankful for the freedom I gained in return.

Back to Holland.

And now, we have put our house up for sale. Our home that we did not want to leave, the place that we love so much. But we’re going anyway. We’re officially migrating back to Holland. That sounds more impressive than it is, we’re literally moving 5 kilometers from our current house. But we’re crossing the border, and that’s exactly what we need.

When we found out that Jackson was deaf we wanted to learn sign language right away. In Belgium we could not start with a course any time soon, ‘maybe in a few months’ they said. Not the answer we were looking for. So we looked around in Holland and we could start a class very close to home almost immediately. Right after the diagnosis there’s so much coming at you, suddenly there’s so much time you need to foresee. Not just for the sign language courses. There were the appointments in the hospital, the physiotherapy, the audiologist, the trainings, the special daycare… We wanted to give Jackson everything he needed, but it also needed to be realistic, practical, we did not want to spend hours in traffic every time.

So we looked for the best care close to home. And sometimes that meant we we’re going to get healthcare for Jackson in Holland instead of Belgium. We live in the countryside and the closest city for us is actually in Holland and not in Belgium. But this Dutch care is not covered by our Belgian health insurance, so we have to pay for it ourselves. When we started looking into schools for Jackson it became clear pretty quickly that no matter what type of school he would attend, sign language would always be a part of it. Dutch sign language because that is what we teach him, but only a Dutch school can provide and support this. Jackson will only be eligible for any of these services, if he lives in Holland. It took a few months to get used to the idea, but then we decided it was the step we needed to take.

I am not angry about what’s happening to us.

If you would have told me 2,5 years ago that I would leave my company and move back to Holland I would have said: ‘no way’. But then an earthquake called ‘Usher syndrome’ turned our whole lives upside down, and we’re still recovering from its aftershocks. I don’t think the aftershocks will ever go away, I just hope their impact will be less powerful. I am not angry about what’s happening to us, I don’t feel resentment. I don’t feel like the decisions we make are sacrifices in any way. We choose to do what is best for us as a family. I am going back to the village I grew up in, the place I’d sworn I would never get back to. The place I couldn’t wait to leave for the big city. We will make a new home there. On the grounds where Willem’s family has lived for years. The house that his grandfather build and where his parents still live. The place where we got married 5 years ago! It’s kinda like we’re going back home and that’s not all bad. Not bad at all.