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Jan
28
2012

The Big Decision Made

I’m officially a stay-at-home mum (who also runs her own online store & blogs … and will freelance, but that’s another story).

I had a talk to my boss last week and after thinking long & hard about it, I didn’t want to drag him on & on with not knowing what my/our schedule is like this week, next month, 3 months from now. We’re also doing okay with our savings (yay for being boring & thrifty!) so I’ve started off this year with a clean slate and no official ‘job’.

That’s not to say I won’t try to make money some how – it’s just that I won’t be employed until Jovie’s settled into a routine and I know what days I can work so I don’t stuff around another employer …

It’s been a harder decision than I thought it would be. On one hand, Jovie & Jasper are my priority – if they need me I’m going to do whatever I can. On the other hand, I’ve always worked and have been with the same company for just over 10 years. It’s all I’ve done and leaving it makes me nervous. And I’ve always wanted to contribute financially to our family, so I feel a bit like a loser for not giving that support. I know I’m doing an important job taking care of the kids, but it’s a big change for me.

I’ve toyed around with working night-shifts somewhere but I’d still have to run around with the kids in the day and would probably tire myself out before I knew it. I’m still thinking of studying for my childcare certificate – I’d love to run a special needs playgroup in my area one day.

I know we’ll be okay but being an one-income family when there’s a child with special needs is daunting!

Wish us luck x

Picture taken months ago when wearing layers didn’t induce terror

Jan
25
2012

A Brand New Year

A Happy Chinese New Year to you – Kung Hei Fat Choy!

We celebrated CNY a couple of weekends ago so that my brother could join in (he’s gone overseas for skiing & a wedding – so jealousss). It was an awesome steamboat lunch which turned into a steamboat left over dinner – just the way it should be!

I also made a billion pineapple tarts again this year, they were the first to go of course 🙂

I’ll be attempting to make some paper lanterns with Jasper but I’ll leave you with this awesome CNY song from 2008. When we were in Malaysia that year, this song was playing EVERYWHERE and it’s seeped into my bloodstream …

A big decision has been made today which means a fresh new start to the new year. I’m excited and scared but know I’m on the right path … more on that soon!

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Jan
18
2012

A Story About Chromosomes, aka A Jovie Update

Well, that’s what this blog post would be about if I knew more about chromosomes….

Yesterday afternoon, we headed back to the Children’s Hospital for an appointment with the Dr that diagnosed Jovie with Autism and a Developmental Delay back in September. At the same time of that diagnosis, Jovie had some bloods taken to test for Fragile X and Rett’s Syndrome.

The Fragile X test came back clear a month or so ago – but we were told the next test would take another 2-3 months to come back with any results. Hence my surprise and nervousness last week when they called us to come in to see them.

So the result?

“Chromosome Microarray testing detects a duplication within chromosome 10, band q25.1”.
“… cannot rule out Rett’s Syndrome”

(So it wasn’t a ‘deletion’ as she mentioned to me on the phone).

Not good or bad, nothing that changes our lives for the better or worse right this second.

What does it mean? They don’t know. Which means we don’t know.

Because they don’t know whether it relates to Jovie’s disabilities, Regan and I have had our bloods taken to check chromosome 10. If one or both of us has the same disorder, then it’s likely she’s inherited it from us and it’s got nothing to do with Autism or Developmental Issues. If none of us have the same duplication, then it’s a random thing – it could be a new disorder altogether apparently. There’s just not enough data in the books to say ‘yes, this duplication causes X and Y’ or ‘yes, this is an indication of Autism’. They can’t rule out Rett’s Syndrome because the testing is limited.

Oi. Have I lost you yet?

We’ll wait for the results and we’ll continue with our lives – playgroups, therapy and lots of love. I need to also sort myself out – get back to ‘work’ and dig myself out of hiding… We’ll see our neurologist soon and then the geneticist, and then the paediatrician and whoever else we need.

So this is an update to say ‘hey Jovie also has this awesome thing about her’. And I say awesome because the more I think about DNA, and children and myself and the world, the more I find life amazing and beautiful and unique. Sure, Jovie has her struggles but we’ll be ok. And that’s life, that’s the way it goes for our family.

Everything that has happened in the last few months has changed me, and even though I don’t know where I am headed myself, I know that this life is meant for living with every part of our chromosomes.

Note to say – I don’t mind sharing parts of Jovie’s reports because I know over time (maybe not today or next week), someone will do the same Google search as I am doing now and I want them to feel free to contact me. So contact me!