The Future?

Parents? Have you ever wondered what your child will be when they grow up? 

Whether they will get married? 

Have kids? 

Be a ballerina like they wanted to be yesterday? 

Or a firefighter like they want to today? 

Or will they end up being a teacher because they are good at helping their little brother or sister learn to play? 

I used to have those dreams. 

He would be arguing with his sister about who was going to take me to the shops, because they were both busy with their families and they didn't have time. Leopold was a head chef and Sybelle was a HR manager. Sybelle didn't want kids although she loved being auntie B to Leopolds 3 little terrors…. 

I don't have those dreams now. 

What? to Will? 

I no longer wonder what Leopold will be when he grows up, but more "will he grow up". 

Intellectual disability is one of the key traits of Xia-Gibbs Syndrome, he's currently still learning. He's still developing. Will that just stop? Will it slow down? He's behind his peers now, but could he catch up and then hit a wall and not go further? 

How does it work? When they say "oh he has the mental age of a 12 year old" did he hit 12 and stop aging? Did he not reach a mental age of 12 until he was 36? Did he hit 21 with a mental age of 21 and then slowly regressed? How does it work? How is it measured? I don't like to think of him as having "intellectual disability" . It sounds so final. Like his brain needs a crutch to physically function. 

"Leopold Time" 

I know many may disagree but I tend to prefer "slow". He can do it. He's learning every day. He's progressing. Just not at the same rate as everyone else, he's doing it all a bit more slowly. Don't get me wrong, I'm not a fan of the word "slow" for adults. Once Leopold stops developing then it won't be appropriate. 

So you know how in the Caribbean they have a different measurement of time? Caribbean time. We have Leopold time. It's the speed he develops. And let me tell you it is not consistent. He will surprise us every day with what he takes onboard. Sometimes it's 1 thing, sometimes it's a mountain of things… he's just doing it in his own Leopold Time. 

How old is old? 

I don't wonder what Leopold will be like when he's older. I wonder if he will get older. Currently, the oldest person diagnosed with Xia-Gibbs Syndrome is 60. 60! According to the doctors, this case is an indicator that there will "probably" be no life limitation to this disease. 

Probably? 

Because of a 60year old? 

If you ask a 60year old if they feel they have lived a long and complete life. I bet they will say no. 

Please don't think I'm being heartless as I know some people have conditions in which life expectancy is a lot lower. But to be told "don't worry, we know he can make it to 60 so that's enough" isn't a good enough answer. 

By the time his peers can retire, the new retirement age will probably be in the 80s. If all he could do is make it to 60, and he went to school and got a degree and didn't start working until he was 20 (it makes the maths simpler) he would have only made it through 2/3rds of his working life. Retirement wouldn't even be within reach. 

Or take the Dr's who believe that is a good life expectancy. With their training and specialties etc they don't really start until they are closer to 30 (again helping my maths) that only just puts them through half of their working life. There's so much more life to live, and we have absolutely no idea if we should be planning for it or not. 

Less Answers = More Questions

When I was first told that, not only had they found an anomaly in his genes, but it also had a name, I was relieved. 

Finally we had an answer, we could give it a name, we could find out more, speak to others in a similar situation, even speak to those who suffer with the same… but as the hours, days, weeks and now even months went past following our diagnosis we are left with so many questions and what ifs? 

But there is one "what if" that plagues me more than the rest… 

What if im not a good enough for him?