The world is my playground

Just before I was born, my grandparents had booked a holiday with the whole family… we were all going to go skiing. The plan was to take me along as a newborn baby (3 months) and my mom would stay with me in the cabin while the others were taking the slopes.

But faith decided otherwise as I was not well at birth, my parents cancelled the holiday and the rest of the family had to go on without us. Only my older brother, who was 3 year old at the time, went along with my grandparents, my aunts, uncles, nieces and cousins. He went skiing for the very first time, without me and my parents. Luckily the rest of the family took very good care of him and he had the time of his life.

My first time on a boat in Spain (july 2009)

As I described in the post “finding kabuki” the first years were quite a struggle so we didn’t do much traveling at all. Until the year 2009, when I was healthy enough and got to go on my very first holiday with my family. We drove to my grandparents place in Spain during the spring holiday to spend the week there. Although the 1800 kilometer drive was quite long, it was quickly forgotten as soon as I felt the sand of the beach between my little toes. The first holiday went so good, that we returned to Spain that same summer to spend our holiday there. This time we took the airplane and I got to fly for the very first time. As is was a only short flight of 2 hours this went fine for me. We had the time of our life and thanks to our great neighbours, Pam and Jim, there in Spain we even got to spend a day with them on their boat which was awesome because we saw dolphins!

As is was a only short flight of 2 hours this went fine for me. We had the time of our life and thanks to our great neighbours, Pam and Jim, there in Spain we even got to spend a day with them on their boat which was awesome because we saw dolphins!

After the great experiences we had as a family in 2009, my parents decided they would never use my Kabuki syndrome as an excuse “not” to travel. They wanted me to be part of every possible experience as, also for them, the experience would not be complete without me. I’m grateful they thought that way because since then, I have been able to see and experience some great things already. And we are only getting started!

During the summer of 2010 we went back to Spain by car and we drove back via the south of France. I Cannes I sat on the red carpet of the “palais de festivals” were all the famous movie stars walk on during the annual Cannes film festival.

Jerom on the red carpet in Cannes (summer 2010)

In 2014 my parents decided we would try a different kind of holiday. We set out to travel through Italy and Croatia which was a very exciting adventure. I got to see some great sights and experience the joy of gnocchi’s for the very first time! Eating out in restaurants got easier and easier. My parents learned that there is no shame in asking the waiter to check with the kitchen if they can prepare mashed potatoes with white fish and some melted butter because that is easy for my mom to mash up at the table for me. 8 out of 10 restaurants will be more than happy to do that for me, which makes eating out almost as easy as eating in for our family.

Family selfie at the top of the Vesuvius near Pompeii in Italy (summer 2014)

And even the physical challenges can be overcome with only little effort. Despite the fact I can’t walk very good, my parents didn’t want to miss the chance to climb up the Vesuvius in Pompeii near Napels in Italy. So they went out to find the nearest outdoor sport store and bought a child carrier backpack to carry me up the mountain. Lucky for them I’m not that heavy 🙂

And an adventure wouldn’t be a real adventure if something didn’t occasionally go wrong. As we arrived in Ancona to take the ferry to Split in Croatia, my parent discovered that my ID-card was expired and as Croatia was not part of the EU-Schengen countries, I couldn’t get in without a valid passport. So we basically had only 3 hours to get to the Belgian consulate, get passport pictures taken and get the paperwork in order or we would miss our boat which was pre-booked without refund possibilities. A little stress hasn’t killed anyone so we managed to get everything sorted and where just in time to get on the boat for the second part of our holiday through Croatia which was delightful!

Getting a temporary passport in Italy to be able to take the ferry to Croatia (summer 2014)
Jerom as a caddy for daddy and brother Tibo (spring 2016)

The years after 2014 we did more traveling together during the spring- and summer holidays throughout Europe. We even went golfing in France once in 2016 and I got to sit at the wheel of a golf cart. Since my feet couldn’t reach the pedals, my parents didn’t worry too much about me driving into a pond.

After all these years of traveling in Europe, this year everything changed for me. For the very first time, my parents took me on a holiday to the US. In february of this year I went with my parents and my brother to Miami.

It took quite some preparation and finding affordable flight tickets for a family of four was a challenge in its own right. Luckily skyscanner offered a solution and by booking 7 months in advance, we were able to buy affordable tickets. The downside of the tickets was that they took us from Brussels over Amsterdam to New York and finally to our final connection to Miami. 27 hours of traveling is quite cumbersome. The doctors gave me a prescription so that I would be calm and at ease during the long flight but this didn’t help much as I fought the drowsiness and my parents didn’t want to give me more than was prescribed. So it did end up being quite a long flight for me and my parents. Luckily, the flight attendants at Delta airlines where very forthcoming. 

Free upgrade to bulkhead seats courtesy of Delta Airlines

When they saw me at the airport in Brussels, they immediately took me and my parents aside and without even asking, upgraded us to the bulkhead seats of the economy plus section of the plane. That way I had plenty of space and on the long flight between Amsterdam and NY, my brother was even able to sleep on the floor in front of our seats. When I needed a diaper change, my parents were allowed to use the kitchen area at the back of the plane (the toilets are really too small for such a chore) and the flight attendants would cover the floor in blankets first so I could lie down comfortably. 

Once we arrived in New York, we realized we had quite some delay and would very likely miss our connection to Miami. But that was not taken into account my mother, who was convinced that we could make it through customs, baggage claim, baggage drop-off and check-in for our connection in less than 30 minutes. They ran through the airport with me in my stroller, rushed through customs which was quite busy at the time, got the bags, dropped them off again and made our connection with 5 minutes to spare. If mom puts her mind to something, not even US customs and airport officials can stop her 🙂

When we finally made it to Miami, it was heaven. We had booked a small hotel in South Beach on the corner of 4th and Washington av. from whereon we explored the Miami beach area. We had an excellent time and the people where much friendlier than what we were used to when traveling in Europe. One time this man came up to my parents and told them “your boy has abilities, that none of us have” – my parents felt blessed by this man’s words and its little encounters like this, that gives our family the courage and the energy to keep going.

Exploring Downtown Miami-Selfie (February 2018)
Saving me from the alligators at Coopertown (February 2018)

The next days we visited downtown Miami and drove down to the everglades where we went on an airboat together. Hovering over the glades was awesome! The speed and the wind in my face felt great and don’t worry, they didn’t feed me to the alligators 🙂

We ended the holiday in Key West where we had a wonderful time at the beach, strolling down Duval street, visiting the Southernmost point, Fort Zachary Taylor Historic State Park. Saw the five toed cats at Hemingway’s place and watched the sunrise at South Beach pier and the sunset at Mallory Square.

Sunset at Mallorey Square - Key West (February 2018)

It’s been such a great ride so far and like I said… we are only getting started. Next year in July my parents plan to take me to the West-Coast of the US where we will explore, California, Nevada and Utah in a camper. I’m a so looking forward to visiting all these natural parks and other great places! The plane tickets have been booked my dad told me and we are planning my coming surgery in such a way that I will be healed and ready to go (they are going to take the metal plates out of my legs early next year)! When we are out there next July, I really look forward to meeting some of you other Kabuki friends over there. As soon as the plan becomes more detailed I’ll be sure to spend a post on that so that we can plan some visits.

That’s it for me today, I hope you enjoyed my post and most importantly, that it has inspired you that no matter what your disability is, the world is your playground – go out and play! And as a family, anything is possible!


C u next week!




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