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On Grief

Posted on June 13th, 2012 by Tracey

Failure is not falling down but refusing to get up.

computer time

A heartfelt thank you to all who have reached out to our family in the last week. I am mostly okay, still very quiet at times as though I’m willing things to stop, just for a minute. I’m a bit overwhelmed but we have alot of support around our family, which has made this week easier.

Therapy for me has been a small tub of icecream, cupcakes, strawberries and a blog redesign. (Aren’t the illustrations of us amazing?). Talking to my girlfriends, the mums at playgroup, new friends online and, of course, my husband Regan has been a great comfort to me.

strawberries&chocolate

I’ve read alot of stories about families and how they’ve dealt with a Rett Syndrome diagnosis, and as I already knew – there is no one way to deal with something like this. For me, I’ve always been Jovie’s mum and I’ve always known Jovie as she is now. It’s not as if she had a major accident and we’ve had to adjust to a new life – Jovie’s always had her quirks just as I’ve always had black hair and a tendency to ramble. For us, it hasn’t been a matter of ‘shock’.

The grief is in the unknown. Knowing what could happen, but not knowing how bad it will get is hard. But only thinking about the hard times, is no way to live. You have to balance the good with the bad, know that yes things are going to be tough but your dreams never come true without working for them.

So, I work for them.

jovie's smile
A smile.

my jasper
For one more submarine cubby house.

jovie's hands
For their future.

And I’ll deal with the sadness as we go because life is way too precious to spend worrying about the unknown.

The Next Chapter.

Posted on June 8th, 2012 by Tracey

The call I received on Tuesday evening was expected, but early. 6 weeks early. We’ve made an appointment for you to come in and see the team at the kids hospital on Thursday morning, is this a good time for you?

I had pushed the thought of getting the results of Jovie’s last DNA test all the way to the back of my head, they weren’t due until the end of July and there was no point in worrying about it when it was still weeks away. Regan and I both suspected Rett Syndrome some 13 months ago, it was on the first referral from our pediatrician but I had not let myself self diagnose and go down that road unnecessarily.

Walking into the observation room at the kid’s hospital yesterday, we’re met with familiar faces and some new ones. All friendly, all with knowing eyes. There’s Jovie’s file on the table and it’s got some weight to it, I think. They ask how Jovie’s been going (Oh, I’ve been keeping an eye on her stair work and book flipping because she seems to be regressing again. No, she hasn’t had any seizures) and what we’ve been up to in the 6 weeks since we last saw each other.

We don’t fluff around much more when the Dr slowly asks me whether I remember what the last DNA test was for – as if I could of ever forgotten. She nods her head slowly and confirms our instincts were right – Jovie has Rett Syndrome.

I know alot of people have never heard of Rett Syndrome before – so here is a brief brief amateur summary from someone with approximately 24 hours experience (hello). Rett Syndrome is neurodevelopmental genetic disorder that is almost exclusive to girls. Every year in Australia, around 1 in 9,000 babies are born with Rett Syndrome. (In comparison to Autism with 1 in 88 children and Down Syndrome with 1 in 660). It causes issues with speech, fine motor, gross motor and growth, aswell as a myriad of other issues (e.g. scoliosis, seizures, hyperventilation, teeth grinding, difficulty swallowing).

In our case, Jovie is able to walk but alot of girls are in wheelchairs. In some cases, they can speak a little but Jovie is unable to currently. 80% will experience seizures. They used to classify it as a degenerative disorder which can result in a shorten typical lifespan, however this is not the case. Yes, some do pass away but some do live long lives with Rett Syndrome.

One of the traits of Rett Syndrome is Autism, so at the moment we still believe she is Autistic but her diagnosis is Rett Syndrome. We’ll most likely assess for this again over the years.

It is a random occurrence, not passed down through the family. No one could of detected it unless we were specifically looking for it. There is no current cure.

The Dr is explaining that they found the spelling mistake within Jovie’s genetics and all eyes are on me, trying to process all this information and the reality of a new stage of our lives, of Jovie’s life. I’m all kinds of things in the next 45 minutes – relieved, sad, tired, happy to have the diagnosis, terrified, optimistic, brave, a wreck. I don’t cry, I leave that for later that night when I’m on my own and reality truly sets in, and the team of professionals offer their support as we leave the unit.

Knowing what I know about Rett Syndrome so far, I’m a bit devastated, if I’m honest. I would be lying outright if I wasn’t sad about the diagnosis, I’m only human. Everyone has to find a pocket for their grief – whether it’s the loss of someone you loved, or your child getting a lifelong disorder diagnosed. There is value to that sadness, and you cannot move forward if you’re pushing that part of your heart away.

However, knowing what I know about Jovie and about myself and our family, we’re going to be okay. It’s just going to be a process and always will be.

So what next? Our appointment to the Rett Clinic at the kid’s hospital is in about a month. We continue to go to therapy and watch our for seizures and regression. Getting quotes to buy Jovie a wheelchair/stroller. I’m embarking on a 100-day challenge to sort my own issues out before I burn out. And we continue to love and cherish our family. Now with added Rett’s.

Living with Jovie

Posted on June 4th, 2012 by Tracey

jovie

There’s a small window of time, in the morning, where it’s just Jovie and I. We’re eating breakfast together at the table, I’m feeding her the usual porridge with banana while I eat my toast. Jasper is in his own world, eating his sandwich on the floor while watching videos on the iPad – whatever gets that food into his belly, I’ve learnt.

Depending on the day, I’ll have around 6 different bags to carry out to the car in a few minutes. Traffic to battle. A city to cross. An inbox burning with spam and requests. My worries have found a new home in my body, and I shake the urge to call in sick for the day. But there’s none of that for us today, for a long while yet.

Occasionally Jovie and I will lock eyes, and trade smiles. She can’t talk yet, but I know she speaks to me alot through those eyes. I think I can read her pretty well these days, and today she’s saying that it’s going to be okay. And that’s all I need to get going.

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Last weekend, I picked up a copy of Chloe Maxwell’s book Living With Max and I didn’t put it down until I was done the next day.

Since our diagnosis in September, and even during the waiting around in the months’ beforehand, I’d been scouring the internet trying to make sense of what Autism means to us now and what to expect. I don’t think I could name 1 Australian ‘celebrity’ with an Autism story to share. Finding memoirs like Living With Max (and even Bloom by Kelle Hampton) and having them so accessible is such an amazing thing for families like us. Opening up the discussion about raising a child with special needs is important – as important as anything I can think of right now. When I was pregnant with both kids, I don’t ever remember anyone discussing what it’s like to raise a child with Autism – and the strength required to deal with what comes with it.

In Living With Max, Chloe talks about her life with honesty that I admire. How life will throw everything at you whether you’re ready or not. And a frank account about dealing with it. Maybe you won’t deal with it well – maybe life will kick you while you’re down – but keep going. For your children and for yourself.

I know that the process in getting to where Chloe (and Max) is today isn’t as quick as a reading a book, but it gives me a sense of hope that there will be a chapter in our life where I’m going to be strong enough to know I’ve come through the worst of it and I’m ready for the next wave.