Today’s post I want to dedicate to my brother Tibo. He was 3 years old when I was born and I can image I’m not the little brother he expected. Knowing you’ll become someone’s bigger brother probably sets a whole deal of expectations in your mind. From protecting your toys from the little critter that came into the family, trough wrestling with the little guy on the living room carpet, to taking it up for your little bro on the playground when other guys start picking on him.
All those expectations shattered for my brother when I was born. I was sick and spent my first years in- and out of the hospital. I didn’t play with my big brother’s toys so no need to worry about those. I wasn’t very mobile so wrestling with me was out of the question. And as I had to go to a special school, we didn’t even get to share a school playground together.
I can only imagine how though it must have been on my big brother but he never showed his grief – on the contrary! The big guy stood by me every step of the way and still does. He’s my personal “All Black” – the quarterback that I can always count on, even in the most difficult moments, his light shines on my path. Thank you bro!
From the minute I was born, he never showed his grief of disappointment. He stood by me and had my back.
Although I know it must have been tough on him at times. My parents have always been very busy with me and the attention they could give my brother, since I was born, was limited. Running from one hospital to another, taking care of me at home, always being preoccupied feeding me, changing my diapers, teaching me to crawl, to walk, to eat… Due to my Kabuki syndrome all those things, that come kind off natural to normal kids, took a lot more effort and perseverance of my parents with me.
I remember my brother, age 4, crawling into my bed behind my parents back and falling a sleep there. Hoping somehow that sleeping in my bed would make my parents give him the same attention they were giving me. How innocent it might look on the picture below, it was a wake up call for my folks and they didn’t leave it at that.
We are a family and everyone has a role to play – so instead of simply giving my brother more attention, they started to involve him in everything that was related to my care. At a very young age they gave him the freedom and the responsibility to interact with me in every way a big brother would do with a normal little brother. And after almost 14 years I can assure you, he’s done a brilliant job with that freedom and responsibility!
He pulled the pranks on me like every older brother pulls on his little brother. Always there to put me in funny situation, camera at arm’s length in case there’s a kodak moment!
But beside the occasional prank now and then, he’s always the first to jump up and try new things with me. Like spontaneously asking my parents if he can go on the merry-go-round with me when he was only 8 years old. When my parents were cautious and scared of what might go wrong with me being so fragile, it was my brother that stood up and said: “com’on mom, I’ll take really go care of him, don’t worry”
In doing so, it’s my brother that often opened my parents eyes and minds to the possibilities and the opportunities that lay in front of us as a family. Where many parents would simply say, “no, that is too dangerous”, step by step my parents got convinced that my syndrome should not be an inhibitor for trying out new things as a family. My brother had a huge impact on this for sure!
Gradually this became our families mindset – nothing is impossible! That doesn’t mean we have become risk takers that are never worried about any of the consequences, but it means we are not afraid to try new things. It’s like learning how to swim – you start of in the shallow part of the pool and try to find out what your body does is the water. Gradually you get more and more confidence and you go a bit deeper. You learn what your personal boundaries are as you go along and sometimes, you have to take a small step back but in the end, you persevere and you learn how to swim like a rockstar!
Now looking back at the years and the great times I had with my family and my brother specifically, I wouldn’t change a single thing. He pushed me and my parents through his enthusiasm and eagerness to try and learn new stuff – but I realize that I pushed him just as much. Doing everything he did with me took courage but also required a lot of responsibility. Two values of which I’m sure he learned a lot growing up.
Today, my brother is 16 years old and together we are having the time of our life. Traveling the world and exploring new places together is something we both enjoy very much. He’s always there for me and never sighs or complains when my parents ask him to pitch in – “Tibo, please run up to go get Jerom out his room and bring him down”, “Tibo, can you feed your brother his breakfast please?”, “Tibo, could change your brother’s diaper please” – he does it all without ever complaining because we are a family – and everyone pitches in and that is what families do.
But sometimes I worry. We’re still young as a family – my parents are still fit and in good health and my brother is in the prime of his life. But what will the future bring? What if my parents lose their own health and are no longer able to take care of me as they do now? I realize those are doom scenario’s and we shouldn’t break our head about this – but now and again, we do. As a family, we openly talk about this and what could or would happen if we ever get in this situation. My brother is pragmatic about this and then states, time and time again that he’ll take me in and that he will take care of me – but my parents won’t have it that way – they claim my brother needs to build out his own life and family. Their burdon should not land on his shoulders. And that is why I’m so eager to grow and to become better at everything. I want to walk, I want to talk, I want to be able to get out of these diapers and feed myself! And one day, I will – because my family believes in me.
I also realize I’m very lucky – not everyone has a brother like mine and I wouldn’t trade him for anything in the world. But I’m sure everyone has someone in their lives like my brother. Someone you can count on, someone who does crazy things with you, someone you can cry with and someone you can laugh with. Someone that makes you better than you already are and in doing so gets better him- or herself along the way. A friend, a nephew or niece, a sister or a brother, a caregiver, a parent or a grandparent… nobody is alone if you allow other people in you life.
So my advice to you is, have an open heart and let people in. Only if you let people in you will be able to find someone who cares for you and who will help you become who you really can be. Like me with my brother, everyone needs someone to look up to and to help you on sail the seas of life.
I hope you enjoyed this weeks blog. I hope I was able to inspire you and feel free to share my blog with anyone who needs a brother or a sister like mine.
Have a great sunday!
Jerom