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Showing posts from 2014

The ugly part......

How do you console your six year old when he tells you he's sad because his brother is going to the hospital again?

What do you say when he asks if they're going to hurt him?

How do you answer him when he asks if his brother is going to be ok?

It's so completely unfair for both of them to go through so much - they're just kids.

To be celiac or not to be.....

Although Jacques' serology tests (blood tests) all came back negative, his gene test for celiac disease came back positive. Therefore there still is a chance he could have celiac disease.

The only way to confirm the diagnosis of celiac disease is to do a small bowel biopsy.

I have mixed feelings about the possibility of him having this disease. On the one hand (the positive side) celiac disease is very treatable, remove all gluten from his diet for the rest of his life, it is also less serious than some of the other diseases and illnesses the doctors suspect at this stage.

On the other hand (the less positive side) removing all gluten will mean a huge adjustment and lifestyle change.  Not only for Jacques, but our whole family. Seeing as even trace amounts of gluten can be poisonous to people with celiac disease, our whole family will have to go gluten free. Now for those who don't know, gluten is found in wheat, barley and rye, thus about everything!

I think I'll still pr…

Ruben - Grade 0 concert

Tonight was Ruben's Grade 0 concert and my heart just about burst with pride.  My little boy is growing up so fast!

This is the third school concert he has been in in his life, the first one was a complete disaster.  He didn't want to be a part of the concert at all, he cried the whole time. The second concert went much better, but in this one, he was a star. You could really see he was enjoying himself.

His brother enjoyed it as much as he did, I worried a bit about how Jacques would react but he loved it from the moment it started.

I always get a bit emotional at these concerts, thinking how those parents who have only one child - with special needs, will probably never know what it's like to watch their son/daughter perform on stage, the tremendous amount of pride and awe at seeing that little person become self confident and self reliant.

But then I think about the small victories Jacques (and every special needs child) achieves and how there are no small victories, ju…

Hurt and angry today....

I am usually a very calm natured person, but this afternoon I was again reminded how little people know and realise what special needs families go through, and I was really upset for a while.

I sent a message to Ruben's, (my neuro typical son) teacher informing her that he would not be at school tomorrow.  The message she sent me back was not only rude but really hurtful as well.  Firstly she didn't even bother asking what the reason was, she went straight for: it's really neglectful (of me), they are busy with assessment and she will not have time next week Monday or Tuesday as they will be busy with final practice for the grade 0 concert and he HAS to be at school for the next 2 weeks so that she can finish the assessments. He is in Grade 0. Further she told me how important it is for him to have a routine.

I'm actually laughing at the last part - she said this to a mother with a son who is on the autism spectrum,  does she even know the term: schedule board. My olde…

Let's try again.....

Oh boy, I'm doing it again, starting a blog.  I'll be honest, it's never really worked out very well for me.  I guess it's because I get easily distracted and bored.  However, this time I'm doing it for me,  myself and I. This year has been really hard on me, and I've decided to start a new blog to work through my feelings and the same time advocate and brag about my family, especially my oldest son, Jacques. He was born with a genetic condition,  we still don't know exactly what, but are hopefully getting closer to some answers.

His current diagnosis is FG Syndrome, however at this stage we suspect possibly, Mitochondrial disease.  We will probably get him tested for Mito next year (it will be the second time he gets tested for Mito, the first test came back inconclusive).

He is going for a bone biopsy as well as a small intestine biopsy to test for both a bone disease and Celiac disease.

After breaking his foot in April and then breaking his leg in August…