Anger - just another stage of grief

I'm just so angry all of the time. 

I can't stop. 

I look at people waiting for a diagnosis and I get angry because they have less problems than Leo but they are being listened to. 

I look at people with a diagnosis and I'm angry because they got it quicker or it's something we are still waiting for. 

I look at people with health insurance, or enough money to pay privately, getting to "jump the queue" and I get angry. 

I'm angry at scientists for not doing more research. 

I'm angry at councils for not acknowledging his difficulties when I tell them. 

I'm angry at therapists who only see a a 5 second snapshot of a "good day"

I'm angry at the doctors who have starting discharging us from their services. 

I'm angry at the clinicians who ignored all the concerns I had when he was younger. 

I'm angry at the world for "punishing" someone so innocent, so loving and caring. 

I'm angry at myself for not fighting harder. 

I'm angry at myself for not being able to conceive naturally, and when I get medical help my body made a mistake with the code copying. 

I'm angry at people who don't see how I struggle. 

I'm angry at those who give us sympathy. 

I'm angry at those who ignore our struggles. 

I'm angry at myself for not being able to give Sibby more of my attention. 

I'm angry at myself for having to split my attention between 2 of them. 

I get angry at Leo for not listening when it's to do with his safety. Then I get angry at myself for getting angry at him. 

I'm angry at people getting more community support, and I'm angry at the people giving them support. 

I'm so so angry…. 

But it's OK…..well it will be. 

But it is NATURAL

I've realised it's just part of the grieving process. 

It's normal to grieve in life. Not just a death. But any major life change, and a new medical diagnosis is no different. 

It's not a linear path, although it's portrayed as such. You can flit between the stages, and the entire cycle can start again each time a new aspect or symptom presents.

Usually you would grieve yourself, but the beauty of a congenital condition is he knows no different. He has nothing to grieve, because he has lost nothing, it is just who he is and always will be. 

Everyone daydreams of their future, and mine has drastically changed. We currently have no way of knowing if he will ever be independent. And it is a scary thought to have. So I have been grieving a future my son never wanted or never even knew of…. Which again makes me angry at myself. 

What are the 5 Stages of Grief? 

1. DENIAL - I was here for a while. Often convincing myself there was nothing wrong and it was all in my head. Even after we got the diagnosis I was in denial for a while. I didn't doubt he had Xia-Gibbs Syndrome, just that it was affecting him. Some things, like communication and mobility, he appears to be a lot less afflicted than others with the same rare condition. So I continued to deny that it would effect him at all.

2. ANGER - one guess what stage I'm currently in?

3. DEPRESSION - this is the other stage I am currently floating between…. It's more from exhaustion I guess. When I have no more energy to be angry, I just get sad. 

4. BARGAINING

5. ACCEPTENCE

The last 2 I haven't yet reached…. I hope I do soon for my own sanity. 

Leopold is fine, he's safe, he's happy, he's loved and he's healthy…. 

So why can't I just let it go? 

Stock photos curtesy of Pexels

P.S. I was very angry when I wrote this one

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? 

What is a rare genetic disease? 

Have you heard of cystic fibrosis? Muscular dystrophy? Huntington's disease? 

Of course you have. You may not know what they involve, but you would have heard of at least one of them. These are all genetic diseases. 

Have you heard of multiple sclerosis? … 

Maybe? This is a rare genetic disease. It was first diagnosed in 1395 and currently approx 2,500,00 people in the world are living with this. 

Have you heard of Xia-Gibbs Syndrome? 

No? I didn't think so. 

Xia-Gibbs Syndrome doesn't make him special, he has always been special.

There are roughly 20,000-25,000 genes in the human DNA. Each gene is made up of a string of bases which are the instructions for the body to make a specific protein. Each protein does its own job and works with a host of others to make our bodies grow, learn, and develop. If you changed one of the bases in the protein "instructions", just 1 little change (like a G to an A) it can change your entire life… and it has changed mine. 

Xia-Gibbs is not just a rare genetic disease, its a new one. First being recognised in 2014, less than 300 people Worldwide have been diagnosed so far.

A drop in the ocean

A medium sized primary school would have around 300 people in it. Can you imagine all the people from your school being scattered around the world, they would be lost in the 1000,000s of others from other schools. They would be bundled into a category with 100s of other schools with different languages and religions and ethics and even dietary preferences. You'll all be treated the same, fed the same, spoken to the same. Sometimes it will relate, sometimes it won't, but nobody will look at you as an individual because amongst 7.7billion people in the world, the 300 from your school aren't even a drop in the ocean. 

Now don't get me wrong, being a small group has its benefits. We have a Facebook group for parents and guardians and there is a real sense of community. We all have to become advocates and experts for our XGS heroes and we are able to support each other to achieve this. 

We fight daily to help our loved ones achieve what we would normally take for granted:

To be whatever they want to be! 

Tell me in the comments what you wanted to be when you grew up ❤