Oh no…..we have to move!!!

We have to move from our happy little abode we’ve lived in for the past 5 1/2 years and at the moment the rental climate has a strong competitive edge to it. Back in the day you used to rock up to your local real estate agent and have a look at the list of rentals. You’d then leave $20 for security,  get the keys and have a look.  If you didn’t like it, that was okay for there were plenty of rental property’s to choose from. When you decided what you liked, you applied and got the place easy.

When I say “back in the day” I’m only referring to five years ago. Since we’ve been living in our safe little bubble the world has moved on and I have to say that it’s a little bit frightening. Searching for a place to live is a whole different game these days. You have to be organised, willing to overcome rejections and to be tenacious , moving on to the next property and not getting discouraged when you see the other 20 people lining up the view the house.

These days you look on the internet http://www.realestate.com.au/rent, send off your e-mail and check it daily. You could go to the individual real estates but all their rentals end up on the net anyway. I’ve been making a note of every property I’ve inquired of. I then write on the calendar when the inspection dates are happening so I don’t get lost and overwhelmed.

So, how do I cope? I can only trust that The Lord has my best interests at hand and that we shall find a place that is right for us. I can’t face this without my God.

Today was a scramble

Today was a scramble, I slept in. When my alarm went off instead of pressing snooze I turned it off because it annoyed me. I was having a lovely dream, watching my Son enjoying his new school activities. Next thing I know, i’v opened my eyes and the clock says 9:30am!!!!

Immediately I flung myself out of bed, rushed around and got ready to Take Zachy to preschool. We were an hour late making me behind schedule for my cafe journaling appointment. Being late is not such a drama, but at this time of  year it’s a scramble to get a car space at the shopping center.  When I arrived the car park was just starting to get that cramped, busy  car park rage potential feeling.  When one enters such moments it’s best to remain calm and just take it easy.

I took my advice and remained calm, got over the disappointment of being late due to my arrogant’s towards the alarm. I was polite and let other motorist’s get there first (well they were actually there first). I found myself stuck behind one motorist who was waiting for somebody to vacate their car park. Instead of going around I just waited and to my pleasant surprise anther somebody came along and kindly vacated their spot so I could just glide in nicely and better still it was in a very convenient location!!!

Now here comes the next scramble, the one for a seat at Gloria Jeans. The place was packed and I ask myself “Am I going to get a seat?” I nearly lost a bit of my calmness at this point as the people in front of me were fussing about. “oh my gosh will you just pull your finger out Love???” However I decided that it was best to have a good attitude and just have faith that God will provide a seat.

Good news, I got a seat and it was a nice cozy seat too. I used this moment to reflect upon our current home situation. We need to look for a new place and the rental market is very competitive at the moment. You go to look at one property and there is 40 people all lined up. I’m telling ya now, it’s a scramble and I’m stressed out. This is a time when I need to tell myself to  just trust in Gods provision. It’s not an easy thing to do but it’s my only hope in a scrambling scary world.

Making a splash locally.

It’s been a wonderful thing to be a part of the VCFS and 22q Foundation of NSW. When we were informed of Zachariah’s diagnosis it was a very traumatic and helpless time of our life. After my crying time I then started to seek other parents who faced the same situation. It was a relief to have my first conversation with Melinda Woods and realised that in fact we weren’t alone; there is a whole community out there to connect with.

After some time I very quickly began to recognise that distance from the core group could be a barrier in getting practical help. So I began to look for help locally and found myself educating service providers and other carers about VCFS. I found this to be an exciting challenge and I’d really like to offer some of the ideas and practical ways of making a splash locally.

I always take advantage of awareness week what a great opportunity to really attempt to get the word out there. I always contact the media and press. This could be daunting for some, I recognise that but it’s worth giving it a go. Over the three yrs that I’ve done this, there have been 4 news paper articles and one TV story on WIN News and I always get good feedback from those articles. Even though the TV story was in 2008 I still have people telling me that they saw me on the news and I always pick up a new person affected by VCFS along the way.

I always book a stall at a shopping centre, I usually just pick 2 day’s as it’s quite a commitment to sit there all day. Once again it’s worth it, even if you don’t have conversation with everyone you’re out there and the word and logo VCFS is getting into people’s brains. I also take the brochures to library’s, Doctor Surgery’s or wherever else is appropriate.

Your preschool/ school is also a great resource in getting the word out there, This year the preschool director where Zachy attends suggested that I write a letter to the parents explaining about what VCFS is. I followed up that idea and supplied all the children with a Percy puzzle sticker.

My next step in making a splash here in the Illawarra is to start a support group right here. I’ve so far contacted the genetic clinic at the hospital to see if they’d like to facilitate a start of a VCFS group. In September I shall be meeting up with the Kerry to see how we can organise that. I’m excited about that as one person I can only do so much but as a group you can be so much more effective.

In general and for the rest of the year I find myself constantly educating everybody about VCFS. Never underestimate your knowledge about VCFS, you are the expert and be confident when explaining it to others.

Coffee Group

Every Friday I attend a coffee group that is a support group for those who are caring for somebody with a disability. The group was started up by Jody (see image above) who saw a need for carer’s to get together in a relaxed and nurturing way. Her foresight and initiative  paid off as we have become a regular and steady group that has been running approximately for two years, perhaps more.

For me personally it has been a very positive experience as I’ve found talking to those who are in the same situation is a little easier as we can truly be empathetic to one another. Don’t get me wrong, those who aren’t faced with the same issues can have empathy. It’s just with those in a similar situation just “get it” if you know what I mean??

We have been meeting at Bobby’s Diner, a friendly little place that serves the nicest egg and bacon rolls. Not only have I met fellow carer’s but those who just like to regularly have coffee at Bobby’s. So this group then expands to become more of community setting that is rewarding and enjoyable to all who attend.

Embarrassing moment……#101

When we go to the Doctors, my son just runs around everywhere and likes to talk very loud as he’s doing it. Visiting the Doctors is a fun thing for him. Between Doctor visits we also see a speech therapist and part of that therapy is to try and get Zachy to keep his mouth shut to prevent his dribbling habits. One of the things we came up with was to say that his tongue was a bear and we are going to hide it in the cave, which of course is his mouth.

We’d been implementing this technique and it seemed to have a positive and constructive effect on him. Although with a very cheeky grin on his face there were times where he just wasn’t into it. However on this particular day in a crowded yet quiet Doctor surgery my energetic son decides it’s speech therapy time and on the top of his lungs he declares “Daddy hides the bear in the cave!!!”

I was mortified……it’s bad enough having to constantly run after my son as it immediately puts me on public display and now with the added statement I could easily run away and hid in a cave myself!!!!

The Hormonal Haze

Recently I was asked to give a presentation about playgroup to a group of brand new mum’s and their teeny tiny baby’s. It was such a pleasure to be in this environment and brought back many memories of when it was my time  being a new mum. I call this stage the “hormonal Haze” and it’s like you are swimming through some invisible underwater sensation that is Motherhood.

That beloved hormonal haze, where everything is baby and when you go to a mum’s group you are floating in the collective hormonal haze. Your conversations and concerns are baby and the way you are is different. You love your baby, you love baby’s, you can’t resist talking about the birth. Your protective of your child and protective of your new role as Mother. You are the only person in the world who knows what your child needs. You know best even though you don’t know anything at all.

It’s such a special time and I enjoyed the hormonal haze. My advice would be to embrace it while you still can and immerse deep in it for it doesn’t last long. There comes a time when the honeymoon will be over and the new part of the journey will present itself. For me it was the diagnose’s of my son’s syndrome, for other’s it was the arrival of their second treasure.

Nevertheless, it is okay when the haze dissipates for your focus and strength is needed for the next part of the journey. Toddler-hood, tantrums, absconding crisis’,  messiness and lots of embarrassing moments. You can’t afford to be in some sort of hormonal haze with all those kinds of  challenges  going on.  So I say hooray to the hormonal Haze and enjoy every moment and don’t waste not one drop of it.

squeezy wheezy cuddle wuddle

Rhythm and rhyme that’s what my son likes to do.

it’s one of his favorite things to do mind you.

he like’s to squeezy weezy and cuddle wuddle.

watch out now for that muddle of  puddle.

does that make sense?

no it doesn’t wuzzn’t

it’s not meant to make sense it’s just rhythm and rhyme.

in spite of my son’s disability he has loads of availability

kicking out rhythms to immerse in the verse.

he doesn’t want any more jelly on his belly

jelly on his belly means watching his heart on the telly.

I don’t think my son’s condition is all the scary

I think his head is  quite literary.

so lets continue with the fun and games

and every one have fun

lots of fun with our names and claims and all things flames.


The Random’s I meet- cafe journaling

I’m always amazed that when I do my cafe journaling the random people who I meet. Today it was an elderly gentleman who had no where else to sit, so he asked if he could sit opposite me. I love and welcome these random moments as it happens to me regularly and by shutting them down I would be missing out on something. I welcome it because of the interesting conversations that we have. If someone is bold enough to sit opposite some random chick with a journal and pen then the conversations are as equally bold and interesting. Rarely will I have a shallow “how’s the weather?” conversation with these random’s. No, they are deep and meaningful often resulting with happiness from both party’s.

This brings me to question my word usage of “random’s” as I feel that they are more like divine appointments.  Each person that comes before me has some deep level thing they want to say. Equally important, each person whom I’ve met in this situation want’s to hear something deep and not be some random person passing by through the crowd of humanity.

I think that these random (divine) moments are showing me that deep down we all want to belong. We all need community and we long for the street and public places to belong to us again. We desire that when we walk down the street or go to cafe’s, we are met with kindness and greetings. Bring back the street party without the legal ramifications or the unsafe trampoline. Remember a time when you could play with the neighbours on the condition that you be home as soon as those street lights turn on.

So what does it all mean to me? I’m going to continue doing this until otherwise notified. By notified I mean when my routine has another change and I’m unable to do this cafe journaling so frequently. At the moment it’s giving me joy so I’m lapping it up and going for the ride.