Yesterday I told Boo about his genetic disorder . I hadn't planned to.  It just sort of happened. It is actually something that I ...

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Yesterday I told Boo about his genetic disorder.

I hadn't planned to. 

It just sort of happened.

It is actually something that I have been agonising over for a while. Wondering how I should bring it up, and how I should explain it to him.  
Turns out the right time revealed itself to me in the end.

We were walking home from school, having just attended parent's consultation. 
I was congratulating Boo on all of his hard work when he asked me what colours he had on his report. 
(Colours are given for each subject, attendance, effort etc.  Green = good/very good progress. Yellow = Satisfactory progress. Red = Poor/very slow progress).

Boo was given Red for all of his subjects (Reading, Writing, Maths and Science).

When I told him this he looked very confused and told me he didn't understand why he had red because he tries really hard.

I couldn't stand to see the disappointment on his face and tried to explain to him that having red didn't mean that he wasn't working hard, that we know he tries his best with everything.  

And then it happened. 

I made the split second decision to be completely open and honest with him.

I told him about his genetic disorder.  

I told him he is extra special.

That he has an extra piece of DNA that makes him unique, but that it sometimes makes it difficult for him to do the same things as other people.

It wasn't easy to explain. 

I had to try and explain what DNA is, which is no easy task when the person you are explaining it to struggles to concentrate and remember what he is being told.

After explaining it to him the best I could, I made sure that I told him it is nothing to be ashamed of, that we are very proud of him, and that it doesn't have to hold him back.  
He can achieve whatever he wants to in life .... he just might have to work a bit harder than everyone else to get there.

He seemed relieved to know why he finds things harder than everyone else, but also confused.

He asked lots of questions and asked me if anyone else knew about it. 

I explained that the teachers at his school are aware of it (so that they can help him with his work), and that other people in our family know about it as well.

One of the things I wanted to be especially clear about is the fact that he doesn't have to tell anybody if he doesn't want to.

I could tell by his expression that he was a bit confused, and anxious about it.  
He said that no one will want to be his friend if they find out.  
That they will laugh at him.

As much as I want to tell him that it wont happen, that people will be nice to him about it, I don't want to sugar coat things for him too much.  
Sadly there ARE people out there who will be mean.  
They will hold his differences against him, and they will try to bring him down.

All we can do is try to prepare him for it.




Later in the evening Boo told me that he feels uncomfortable about being different.  

I tried my best to reassure him, and told him that everyone is different in some way.

It breaks my heart to see him struggle with his feelings, but I know that this had to happen at some point.  

He is getting to old for us to keep it from him, and needs to be aware of things before he starts high school in September.

When Boo is older he will have the opportunity to meet with his geneticist so that they can explain things to him in more detail, and so that they can prepare him for the risks he needs to be aware of when he becomes sexually active.
Boo has a 50% chance of passing his genetic disorder to his children.

I'm still not entirely sure how much of it he understands, but at least we have taken the first steps.  

It is going to take a while for him to come to terms with what it all means.

All I can do is be there for him when he needs me, and try to help him grow in to a confident, independent adult.

I just wish it didn't have to be so heartbreakingly hard to see him go through it all.

Missy x






Just Giving Marissa Bird