You might have seen the pictures. Jackson and I were invited for a holiday to Bonaire with my sister. Sun, blue sea and white beaches in the Caribbean, all very lovely. What Instagram doesn’t show you is what it’s really like with a 2 yr old with Usher syndrome on a tropical island. So let me tell you.

First of all his cochlear implants on the beach. Parents from other CI-kids will recognize this for sure. CI’s and sand are not a very good combination, so you have to decide if you leave them on or off. At first Jackson didn’t even want to touch the sand, so that was easy, I left his CI’s on. After a couple of days I was tired of dragging him around the beach and just put him on the sand. After some hesitation he enjoyed playing in the sand and out of precaution  I took his CI’s off.

Whenever we went into the ocean or the pool, I had to take off his CI’s as well. The MED-EL implants that Jackson wears aren’t waterproof. No CI’s means Jackson cannot hear and we have to rely on sign language. That works fine, but I do have to focus (a lot), and I don’t always have both hands free to sign. But we manage, although I sometimes really had to improvise. He pointed to a buoy in the water and asked me ‘what is that?’ I had no idea what the correct sign was but I made one up…

When not wearing his CI’s Jackson pays extra attention to my mouth, to see what I am saying. I have to make sure not to stand in front of the sun, because he’s not able to see my face or signs while looking at me. We can easily communicate with signs, even when he’s upset, I am still able to comfort him. That feels really good and reassures me. Jackson is just as happy with his CI’s on or off. He will just babble on, asking questions, pointing out things, communicating by speech and signs.

I think our physiotherapist will be really proud of all the work we did on the island. Things that are normal and easy for any other toddler can be really challenging for Jackson. Walking on different surfaces for example. The change from wood to tarmac, to gravel, to sand and back was not always easy. But I think it did a lot for his confidence. All the walking and climbing we did, I considered as exercise for his balance and I encouraged him to do things independently. Our house was near a playground, it was a stop in our daily run together. I let him do the slide and the climbing all on his own. I think his father would have had a seizure if he saw that, sorry my love… In the end Jackson even walked alone in the pool, I thought that was an amazing achievement of him. Of course he fell as well but he laughed it all away. I was so proud of him.

Besides his CI’s and balance his eyes are another point of attention. On most pictures you will see J wearing sunglasses and/or a sun hat. That’s not just for a pretty picture. All the doctors we have met, and adults with Usher syndrome, have urged us to protect Jacksons eyes from the sun. UV radiation could possibly accelerate or worsen the deterioration of his vision. So I left for Bonaire with 3 pairs of sunglasses and 2 sun hats and made it one of my top priorities to make sure his eyes were protected at all times. We’ve been doing this at home as well, so he’s used to it and actually asks for the sunglasses himself whenever the sun is out.

Of course I have seen the occasional stares and raised eyebrows when people see Jackson. People coming up to me and asking about his CI’s. I never mind, usually we end up having a nice conversation. Everywhere we went on Bonaire, the beach, the supermarket, the restaurant or in the airplane. Everybody knew Jackson. And that might have been because of his CI’s, but just as well because of his blue eyes and big smile!