The Reality vs The Dream..

Needless to say, raising triplets with special needs is a bit of a challenge… 

Especially when you don't fit in an average house..

Meet Anwen, Mahalah and Gideon Read, typical 7 year old siblings, as different as chalk and cheese, and as bright as buttons..

Welcome to our home! As you enter, you can't get far into our house without being surrounded by 3 sets of power wheels, accompanied by three talkative 7 year olds; stories and chatter resounding off the walls, sentences overlapping each other, competing for your attention. (Not to mention our exuberant black labrador who will bound deftly between the wheels to welcome you!)  

Anwen loves animals

Gideon, cheeky boy.

Mahalah is very creative

Would you like a cuppa?.. That's our photo album.. Benjamin and I, (then Jemimah Jessop), were married in 2005- Yes, I know, we look young!

And here's the kids as babies, all lined up in a row, born in Nov 2006.

Oh YES, it was a HUGE surprise to learn we were expecting triplets.. Confirmed only 8 weeks before their birth.. But a bigger shock was to come..

(The Reality bit):

Unbeknown to Ben and I, the kids were born with Merosin Deficient Congenital Muscular Dystrophy. A genetic thing. Very rare. 

Diagnosed at 18mths, first power wheelchairs at 2 years old, life suddenly took us in an unexpected direction. We needed to stop work and became full time carers, adapting our lives around the kids special needs...

Gideon 2yrs

Mahalah 2yrs 

    

Now, at 7 years old and growing quickly, they have just finished Year One at the local public school, and we look down the barrel of the next five years. (They will be 12 before we know it!)..  For some time Ben and I have felt the strong need of a home that is not just wheelchair friendly- but highly accessible, for THREE rapidly growing children! 

The last day of Year One. 

Everyday in our current house the kids are limited and restricted in what they can do. We'd like to teach them a growing independence, in things like cooking, making lunches, doing dishes, but they cannot use the kitchen or come near it without blocking it up or backing into the fridge/cupboard/our feet.

 We would like for them to have room to maneuver around the house without the worry of damaging walls, squeezing through tight turns or dealing with the daily frustration of bottlenecks that disallow them plus their brother or sister.

We would love to give them more freedom outside, and space to explore, but our small block is a limited space for three fast power chairs, and our house being built off the ground means there are hazardous steps and tight ramps, not to mention the fiddly doors which they struggle to open with their weak hands. All these minor obstacles for the able-bodied, can render them helpless..    

(Here's the dream bit):

We have spent most of 2013 thinking through a liveable housing solution that takes into account the nationally recommend accessibility guidelines AND the needs of THREE wheelchair users... 

So... after looking at many options, Ben and I recently decided we need to buy a larger block on the fringes of Canowindra and build a purpose-built house that meets the kids special needs in the best possible way.

The POSSIBILITIES  for them -in terms of greater independence and freedom- is exciting! 



The cost is another thing....

You're off now. On your way out, after many minutes attempting to extract yourself from a few (mainly one sided) 7 year old conversations, many 'goodbyes' will be said, and as I try to help you 'escape' down the hallway towards the front door, I will say a heartfelt "Thank you so much for visiting our place, seeing our little world.. Come again!" 

(Stay tuned for the next instalment: 'Making The Dream a Reality')

-Jem. Xo

The Miracle House..

Q: How can two carers, with limited income and three wheelchair-bound children, build a house? Let alone one big enough for three wheelchair users?

A: With some pretty special help. Hence the title 'The Miracle House'.. 'Miracle' in the 'supernatural help' sense of the word! 







2013 was full of challenges as we adapted to our triplets new, larger,  power wheelchairs. 

Especially in the way they impact our home environment. (See previous post)...

Then, when the kids turned 7 in November, we looked ahead a few more years down the track, and realised that by the time they reach 10 years old they will have well and truly outgrown our current house.

Added to that, the daily frustration that we live with seems almost unbearable at times. 

..and the wheelchairs are just going to get bigger.

These things compounded our need for a more accessible house, so we decided we need to take the risk, that we need to make a space, build a purpose-built house, where Anwen, Mahalah and Gideon can live and grow, with as little limitations and frustrations as possible...

So, we are looking at purchasing some land around town and starting the process of building a house..

This is where others can become a part of the   miracle..

This is me putting it 'out there'... Inviting people to join our little adventure and help to make this 'miracle house' a reality..

If  you are interested, please contact myself (Jemimah Read) at benjem@gmail.com, or leave a comment below.

Alternatively, we have set up a long term savings account* for the purpose of providing for Anwen, Mahalah and Gideon's ongoing special needs. (See details below).

Thank you so much for your interest, please feel free to pass this on to any you think may be interested.

With gratitude to you (and to The One who daily helps us!)   

-Jem. Xo

Account name: Ben and Jemimah Read,  

                         Read Triplets Special Needs   

BSB: 082500 (Canowindra NAB)

Account number: 396905753

*The purpose of this special savings account is to help meet larger 'current special needs' of the Read Triplets, particularly to enable their independence.   

All funds deposited would be used to meet the current special need, at the moment being a fully accessible house, until this goal is met. 

(Another year it may be that they will need new wheelchairs, or later on their own modified vehicle, etc.)

A Place To Call Home

On a recent visit out to the farm where Ben works, it was apparent again, how physical SPACE is so important to our family's well being. The kids had a blast, racing across the paddocks unhindered! (No curbs or steps in sight!)

Large open spaces like these evoke an encouraging sense of freedom and 'welcome home' for us.. Hard to describe, but I love it!

So, the planning and dreaming for an accessible house continues!...

Anwen, Mahalah and Gideon have just started Year 2 at Canowindra public school and have settled into the year well. I wonder what this year will hold?!..

They are growing up fast. I'm sure they have grown over the summer holidays. The other morning I came in to Gideon's room to help him start his day, and in my minds eye I saw him as a lanky teenager. I had to smile. 7 is such a precious age, pity kids grow up so quickly.

Anwen plays in the river

Mahalah, so happy to be down by the water.

Gideon drives a tractor with Dad!

We have been looking at potential land and thinking through house materials and designs..

Ben has been busy researching all the various options. There is much to decide on, and we are taking things one step at a time. We have been very grateful for the help of some talented friends and benefactors. 

 

As I've mentioned before, we've set up a special account for this project, and it's gradually accumulating.

Thanks so much to those who have helped so generously already! It all helps! Please feel free to pass on our blog/ details to your friends. We greatly appreciate any assistance in helping to raise this accessible 'Miracle House'.

So...









Our adventure continues..!



We'll keep you posted.

With gratitude!



Jem. xox



(for those interested here are the account details)



Acc name: Read Triplets Special Needs

Acc BSB:  082 500   (NAB Canowindra)

Acc number: 3969 05753

The Miracle House Doco!

Let me introduce you to the latest release: The Miracle House motion picture! 

http://m.youtube.com/watch?v=ZB5h85Xajig&feature=youtu.be

 Thanks to a talented young lady, a beautiful short doco has been made that accurately portrays our daily reality.. (oh my).

Katie manages to capture it all so skillfully that critics say watching it doesn't 'feel' like the 19 minutes it is. 

(A shorter 3min version is currently being made and will be posted here in the near future.) 

http://m.youtube.com/watch?v=ZB5h85Xajig&feature=youtu.be

This doco was originally created for close friends and family, but after watching it Ben and I were so happy with the content that we decided to send it 'out into the ether'!  

Happy viewing! (And feel free to on-share with those who may be interested).

On behalf of our family,

Thanks and cheers,

Jem. xo

http://m.youtube.com/watch?v=ZB5h85Xajig&feature=youtu.be

Ps: Gideon and Anwen have a rare hug.. (Because usually both of them are in wheelchairs. Anwen is in a standing frame and Gideon is sitting on his bed.) 

Pps: We recently had some of the kids friends over and decorated cupcakes! Needless to say Mahalah loved it! 

The Daily Grind? -an insight.

It was just one of those cold, miserable weeks...Where each morning felt like a laborious grind.. A repitition of the one before..

 I had many an opportunity to serve, to help beautiful children who can't help themselves..

Welcome to my world. 

Every day I get the same opportunity; usually woken by one of our 7yr olds needing help of some sort. Maybe a nebuliser and assisted coughing. Usually to roll over or sit up in bed. Because they are too weak to do any of it themselves.  

Then it's toileting time, as two out of the three are unable to toilet themselves unassisted. 

This week I made the mistake of thinking too far into the future, and I wondered if they would still be needing help to go to the toilet as teenagers. Yes probably, definitely. 

Then, after a quick coffee, Ben and I set too work getting everyone dressed. He helps Gideon, I help the girls. Now it's winter, they are susceptible to the cold and sickness, so there is 4 or 5 layers to put on. And each layer means helping arms that cannot push themselves through the sleeve unaided. 

There are also 6 feet that need socks pulled up, AFOs (ankle foot orthosis) strapped on and shoes crammed on over the top. Two out of the three pairs are clean shoes that don't actually touch the ground. 

I feel like I've accomplished something big as the girls emerge from the bedroom in clean, warm clothes and shoes. 

But we're not out the door yet.. 

Thick beautiful hair needs my brushing, breakfast needs our making, cumbersome bags need our help to get packed, and not to mention the final jumble of big jackets, beanies & scarves that need placing. 

I would get them to do it themselves If they had the strength to. Not a chance - especially with all those clothes on!  

We were late to school everyday this week. (Getting myself ready is an after thought). And I went home to the dishes,  again.. 

 More often than not, in my weakness and selfishness, I grumbled. I *really* didnt do too well at all.. 

The lies filled my head in my worn out state: "I can't do this.." "Will my time ever come?" "I've got nothing left for this" And they cut and drain. It's a downward spiral that leads to anger and pain and isolation..

After another round of tears today, thankfully Mr Benjamin came through for me once again; "What if instead you say 'Thankyou for this opportunity to serve'.."

Because the truth is, as I've decided to say; "Yes, I'm really tired of this, but I've been entrusted with this and I can do it. 

Thank you Jesus for this opportunity to serve You and and Yours.." 

Anyway, Imagine how much good could be missed!  So much potential.. 

:) 

Xo

P.S (Ben and Gideon made a 'hot air ballon' this evening! The kids called it The Dutchess. "Isn't she a beauty mum!" Gideon kept saying. It was the highlight of his day.) :) 

P.P.S: thank you very much to the beautiful recent donors to the house fund, so blessed! :) 

The house funds are at $13,770. The cost of building will probably be in the hundreds of thousands. 

Our Story Explained in 8min Video!

Only have less than 10 minutes and would like to quickly find out what is going on around here?

Here is a gorgeous 8 min explanatory video professionally crafted by the talented Katie Stiles. 

Enjoy! (& share!) 

https://m.youtube.com/watch?v=MTFISs-km8I&list=PLR0xKhxPBkxTESuPhcCpzeYsWHgoQQA0g

-Jem xo

Winter Adventures and Fundraising Update!

It's a welcome relief to see our tree out the back starting to blossom, and the first whispers of Spring are floating through the open window.

 It was a long winter for a while there!.. People down the street have been asking me where I've been, so I better poke my head out of my little burrow and explain..! 

We've been very busy this term, hibernating inside to stay warm and well. Then when the sickness finally found us, Ben and I were kept busy around the clock actively helping the kids to stay on top of a respiratory virus. 

It eventually got the better of Anwen, so she and I spent a week in the lovely children's ward at Orange hospital while she won back her full lung function from the virus..

I am so thankful to be living in this day and age, I tell you! Thank you Aunty Deidre and 'Aunty' Katie for your encouraging visits, as well as the lovely staff on the ward.

Anwen in hospital, July

Then about a month later it was Gideon's turn! He recently spent a week at Westmead Kid's Hospital after having both of his hip cups and femoral heads operated on. It was scheduled since last December, and we knew what to expect as Anwen had the same operation last year (to stabilise dislocating hips).

Even still, it was a big strain on our family, being separated from each other, and helping Gideon recover and deal with the pain post-op, now that he is home.



Thank you very much to all the family and friends involved in supporting us through that time. We would've really struggled without you -especially Nanna Mereen and Aunty Judy.

Gideon 5 days post surgery, August

Now that we are all home together, and the weather has been kinder, it's been nice to venture out again as a family- we still love getting outdoors when we can. Last weekend we took a picnic lunch to the reserve out of town and I thoroughly enjoyed watching the kids wander off along the bush tracks- until daddy took them down a 4wdriving ravine and they did a bit of mud slinging themselves!

You don't know *how long* it took me to hose the mud off their tyres so they could come inside - but it was worth it! 

Ben builds a bridge for the return journey..

So that is where I've been!.. Now for the update:



Despite our attention being elsewhere, things have been progressing along really well with the kids 'miracle house' project. We have put a deposit down on a block of land, and are awaiting settlement- more info to come..!

 Every week there is donations continuing to come in to build the new house, as well as many different fundraising ideas and events.

So far over $35, 000 has been raised in 6 months! Thank you *very* much to all those who have got behind us- it is hard to say thank you to you all, but we are very grateful..



Thanks especially to the lovely people at the Salvation Army Church in Orange for their overwhelming support and generosity! Thanks also to Kathy and Stuart of Collaroy for hosting the recently successful High Tea Fundraiser, and all those who attended and donated at that event! Big thanks also to St Faiths Anglican Church in Narabeen for their support, and especially to David and Carol, and all of our family- you have all been so encouraging.

Just like the tree out the back, things are stirring... Spring is coming, and hope is in the air!

Our Golden Elm waking up!