An open letter to the church

Last night, I was at a prayer meeting, and we were discussing the topic of  'why does God allow suffering'. In the course of the discussion, Samara having Down Syndrome came up. One of the women mentioned the classic belief that God only gives special kids to special parents. So I shared with her the tshirt design I have just come up with that it is through God blessing us with our special children that we become special parents, not the other way round.

Anyway, lately I have really felt a call to promote disability awareness. That's why I do the t-shirts, after all. But last nights conversation really got me thinking about the role of the church in reaching out to those with disabilities and their families. One day, I hope to share this with my church. One day, I hope to share it with churches everywhere. So if this touches on something in your own heart, please, feel free to share it.

LETTER TO THE CHURCH

Jesus would leave the 99 to save the 1. What does that mean? Would we put ourselves out for the 1, or are we happier with the 99 we already have? If 99 are already saved, who is the1? I don't think He was just talking about your average everyday sinners who need saved. If He was, the ratio would be more like leaving the 10 to save the 90. And I don't think that He was referring to the Christians who backslide. Cos the ratio would still be more like leaving the 80 to save the 20. Now, I know it is a parable. We are not really sheep grazing in a field. But why did He choose the number ratio that He did? I believe it is because we, even as Christians, put a value on human life. A value based on our own narrow views of who we invest our time on. Usually those who we expect to gain from. Either in church attendance, physical help, friendship, financial assistance, or other tangible 'returns'.

Think I am off the wall here? Let's imagine for a moment that I am a full time wheelchair user. I cannot walk at all. I've noticed the people milling around after the Sunday morning service, and they all seem to be happy and friendly. The kids are running around laughing, and climbing trees in their Sunday best. Something tugs at me. Maybe God has been gently calling me for a while. So one Sunday, I get all dressed up. Something that isn't easy for me, but if I'm going to meet God for the first time, I kinda want to spruce myself up a bit. Put in the effort if you know what I mean. It's a cold morning, but pushing myself up the gentle slope of the street (which, incidentally has no footpath, so I am sharing space with the cars on the potholed road), I quickly work up a sweat. I arrive at the church. Hold on. Something I hadn't noticed before. There is no ramp. Ok, so the building is old, the church is small, and ramps cost money. And until now, there hasn't been a wheelchair user in the congregation. The 99 people attending that church all have full use of their legs. But then I remember. I am the 1. The forgotten loner. It isn't cost effective to have wheelchair access when no-one has needed it before now. And even now, my tithes won't cover the costs for a long long time. I am, after all a beneficiary, so my tithes don't really amount to much.

Feeling despondent, I turn to leave. But a couple of people notice me. They run over and offer to lift me, chair and all, to the door. I gratefully accept. I repeatedly thank them for their generosity. I am basically prostrating myself with thanks that someone is offering me the chance to enter their church, where I should have automatically had access anyway. Just because I am human. But, instead, I have been put in a place of having to lower myself to the position of grovelling cripple. I am used to this, so I shrug it off. It is just a part of my life now.

The service itself was great. I really felt God calling me. So at the alter call, I wheeled my way forward, wanting to give my life to Jesus. But the pastor doesn't take the time to find that out. He immediately prays for the 'obvious'. That I would be healed. Saved from the curse of the wheelchair. HELLO, I want to be saved from the curse of sin, not this chair! I am a person here. Not a case study. Or an opportunity for you to witness a miracle. Please. Accept me as I am. Love me as I am. And lead me to the one who saves the soul. There will be plenty of time to talk about the other aspects of my life later. You could maybe even install that ramp.

Oh, but next time........Install the ramp first. I may not be the first one who has turned away.

So, what should we as a church be doing? Well, Jesus said that as we do to these the least of His Brethren, we have done it to Him. So, have we decided that those with disabilities and their parents have been given some sort of supernatural powers to deal with the life they have been given, and pray for them, while secretly being thankful God didn't think we were that 'special' to have to handle that situation? Do we tell them that if they can increase their faith enough, that He will heal them? Do we leave it to the government agencies to support them in whatever ways it is that people like 'THAT' need support?

God made it pretty clear. In what we do for these Brethren, we are doing for Him. Conversely, in what we ignore in regards to these Brethren, we are ignoring Him. It is not the state's job to provide for the disabled, the orphans, the widows. It is the church's job. The state has just had to take over, cos the church wasn't doing it's job properly. And truthfully, the state doesn't do that great a job of it either. Sure, there is some financial help and respite care available. But have you seen the hoops you have to jump through to get it? Sometimes it's easier to not bother. And those financial helps never come close to covering the cost of not being able to work, having to travel for specialist appointments, paying for a housekeeper cos you're too tired to lift your head another moment.

So, what as a church should we be doing? I don't believe God gives a special needs child on a family and says 'Well, you're on your own now. Let's see if you can pass the test'. No. He has provided for the least of His Brethren, by telling the church to take on the responsibility of helping out. If every Christian in our small town devoted just 3 hours a week (that's as much time as one church meeting) to helping a family with a disabled member, then I believe that we would be reaching into the lives of every disabled person in our community. 3 hours to offer some respite. 3 hours to do a bit of housework. 3 hours for an overworked, underpaid single mum to have a sleep.

Think you're too busy? Have too much else to do? Have your own family to care for? I know mothers out there, whose partners have left them, and whose children literally need 24/7 care. They sleep with one eye open. They are up and down adjusting tube feeds through the night. THEY are the ones who have no time. Yet they do it because they have to. It is the right thing to do. Well, Jesus tells us ALL it is the right thing to do. Not just the parents. Are you too busy to give Jesus 3 hours a week? Because, if so, then you are too busy to do just what He asks of you.

Doctors, lawyers, miners, 2 income families. You may work hard for your high incomes. Those with family members who are disabled work a lot harder. And most of them live below the poverty line. Think about that. Some of these people work 24/7, always on call. Doing medical procedures most of us have never heard of. Being Dr, Nurse, Carer, Interpreter, Researcher, and more in addition to the role of being a parent. And, they live below the poverty line. Something is amiss. And I believe it starts with the church to turn things around.

Disability awareness isn't just about acceptance. It is about embracing. Taking on whatever we can to ease the burden of care. The person isn't a burden. But often, the health issues, the physical demands, and, sadly the attitudes of others, create a burden. It is our job as Christians to be servants. We are Christ's representatives on Earth. Are we giving Him a good name?

My most precious design, and a few others!

 The other day, I had someone comment that they needed something that warned people not to cross her. She suggested something similar to what this says......Good for her, I say!

The idea for this one came from a picture of some graffiti that said Revolution, in much the same way as this does. As soon as I saw it, I thought, this would be good for disability rights!

 Like many parents of special needs kids, I have always found the saying 'God gives special kids to special parents' to be one of those things that is meant to make you feel good, while they are secretly thinking 'glad I'm not you'! So this is my way of setting them straight!

This one is dedicated to Charlie. Charlie was a little boy who only got to hug his mummy and daddy for 10 short weeks. I 'met' his mum on Facebook yesterday, where she is running an auction to raise money for the Royal Brisbane and Womens Hospital, where Charlie was born, and lived all but 6 days of his short life. Please go and support her efforts at Charlie Bear's Gift. In honour of his nickname, I have donated one of the teddy bears in my Cafe Press store to this auction. RIP little man xxx.

This design is available on a limited number of products in my store at www.cafepress.com.au/justjuniors. It is customisable, and has a space for your childs name, and their birth/death dates. It was such a hard design to do. And at the same time, a reminder to treasure every day we have with our children. I often feel so drained when I have to sit up with Samara night after night after night to keep her breathing. But then, I 'meet' someone like Charlie's family, and I am reminded, that I am blessed that I have a child to have to stay up with. And I would stay up every night for the rest of my life to keep her with me. My heart breaks for those who have had to say goodbye, despite all they have done. Thank you Stephanie for sharing your little man with us, and for your support of the hospital (that was also our home for many weeks!)

On a more personal note, Sara is now back home in New Zealand. Even with 5 daughters still living at home, I still suffer from empty nest syndrome! Alicia has been out in the world for 4 years now (we moved to Australia 4 years ago this month), but I'm still not used to it! It is especially hard when they don't even live in the same country! I wish so much I could go back, and do things differently, appreciate each day more, love them more dearly. I really am blessed to have a little one still. And I must admit, to clinging to the fact she won't grow up as fast as the others!!! LOL.

Samara seems to be sick again. Her ears cleared up, but yesterday she was all grizzly, and today she has spent the grand total of 2 hours awake. And both times she was woken up. Not sure what is wrong, but she is pretty miserable. That's the problem with having a child who is almost 3 but who has such a limited vocabulary. Good thing she is so cuddly. At least then I can comfort her if nothing else.

Today I rang to apply for the new Better Start funding that the government has brought out. Don't know if we will get it or not since I am a Kiwi, but it sounds like we will since Samara was born here. But I must admit, I am troubled by the fact that it only covers 6 disabilities. While Samara qualifies on two counts (the Down Syndrome, and she has a hearing loss of 55 decibels - the criteria being anything more than 40), there are many children out there who have disabilities that are a lot more disabling than her 2 put together. And they don't qualify. Simply because they don't have the 'correct' diagnosis. The 6 disabilities covered are Down Syndrome, Hearing and Sight losses, Fragile X Syndrome, Cerebral Palsy and Deaflindness. If your child doesn't fit one of these categories, they get nothing. Now, I know people with really mild CP but they are covered. I know people with mosaic DS who don't even show it, but they qualify. At a loss of 40 decibels Samara was still able to hear most things, and was only given hearing aids to help with her speech because she also had DS (this has worsened, but it shows how minor it is). Children with this mild loss qualify. Yet those with other chromosomal disorders, those with head injuries, those with a huge number of other developmental disabilities can't get the funding. What is wrong with our government? Please, no matter where you are from, check out this site where you can read more, and sign a petition to have this initiative made more widely available to all children in Australia with developmental disabilities.

Some new designs at last....

Well, I finally dug the old laptop out of storage. The one that has Photoshop on it, but also has the distinct disadvantage of the fan not being powerful enough to keep it cool! I have been itching to do some more designs for a while now, so here are the latest 4....

This one is customisable, so you can put in your own childs name and disability.

For the boys. And.....

For the girls!

And for those who are a little bit older!

Not many, I know, but it takes so long to upload them all to Cafe Press! Hopefully now that I have dug this computer our of hiding, I will get quite a few more done.

I have quite a collection of sayings, and am slowly working my way through them. But what I really need is to hear what you would like! So far I have made a few designs for those who wanted something specific to their childs disability, and I have learned a lot along the way. I am always open to new ideas, so feel free to share in the comments section.

On a more personal note, we have our 2nd eldest daughter staying with us from Christchurch, New Zealand. She heads back on Tuesday, but is leaving us for Brisbane tomorrow :( For the life of me, I can't figure out why anyone would want to be living there right now, let alone 2 of my children, but I guess at 22 and 19, they consider themselves indestructable!

Samara has been having a difficult winter, with me spending copious amounts of time sitting up in bed with her so she can breathe. Then to make things interesting, her eardrum burst the other day, due to an infection. This could prove to be a problem, as she is due to have her grommets replaced in the next few weeks, so it could affect the surgery dates. We have been spending most of our time at home, trying to keep her away from all the bugs going around. But, I'm not convinced it's really working!!

Disability Services, out here in the middle of nowhere, has taken a big Government funding cut, and we are now loosing our Local Area Co-ordinators. They were such an awesome couple (husband and wife were both employed there), and now we have just had to say goodbye to them. Roma won't be the same for many people without them.

Roma also lost a dear little treasure this week. Bethany Waldron was a young girl with Cerebral Palsy. She was known by pretty much everyone in this small country town. In fact, the town had just rallied and raised $30,000 for a wheelchair lift to be added to their van. But she spent the last couple of weeks fighting off pnuemonia, and finally succumed on Thursday morning. I didn't know her well. I am a newbie to town. But still, my heart is feeling very sad and heavy. How can one ever reconcile the death of a child?

Now I am feeling sad. And don't feel like saying much else. So I'll leave it there for now. Hopefully I'll be a bit cheerier next time. xxx

The use of the R word

There has been much talk about the use of the 'R' word lately. There is a massive campaign to try and stop its use. Many people have tried to explain why it is so important. But no-one has touched on it in such a 'stop me in my tracks' kind of way as Dave Hingsburger. His article is reproduced in full (with his permission) below. You can link to the article here http://davehingsburger.blogspot.com/2010/08/people-who-are.html

The People Who 'ARE'

It's in the press again. I search to find out the context of the word. I see debates all over the web, people bemoaning the 'politically correct' and the 'word police' and making ridiculous claims about having to ban the concept of a 'fire retardant'. Last I looked there's never been a protest about products that protect from fire. Last I looked there's only ever been protests about the use of a word that demeans a group of people.

No matter what the fearless defenders of freedom of speech say, there is a huge difference between a word to describe something that slows fire and someone who learns differently. There's a huge difference between a thing and a person - but, no, maybe not. After reading their diatribes regarding their freedom to spit out hurtful words, they may, really, not see people with disabilities as fully human with a human heart capable human hurt.

People mock the concept of respectful language regarding disability. People make odd arguments about the latest gaffe by ... no, I won't say her name here ... they say 'she was saying that of herself not anyone else' - um, so? The word she used was one referring, not to a commercial product, but to an oppressed minority. Yet the debate rages on and the fierceness of the attack by those who are proponents of the use of hate language are both hysterical and who often purposely miss the point. One wonders what's at stake - their personal liberty to hurt others?

It's time to recognize that the 'R' word is an attack against who people with with intellectual disabilities 'are', it is an attack against the group that they belong to. It is like other words that exist to slur an entire people, unacceptable. The fact that people do not see the seriousness of the word and the attack it represents is simply a result of the fact that they do not take the 'people' who wear that label seriously. The concerns of those with intellectual disabilities have always been diminished and trivialized. There is a sneaking suspicion that they 'don't understand, poor dears', that they 'miss the point, little lambs' so therefore their anger need not be feared as justified.

The people who 'ARE' what the 'R' word refers to have a long history.

They have been torn from families and cast into institutions.

They have been beaten, hosed down, over medicated, under nourished, sterilized, brutalized, victimized.

They have been held captive, have been enslaved, have had their being given over to the state.

They are the group in society most likely to be physically, sexually and financially abused.

They are the group least likely to see justice, experience fair play, receive accommodation or support within the justice system.

They are the group most likely to be bullied, most likely to be tyrannized, most likely to be the target of taunts.

They are the least likely to have their hurt taken seriously, physical hurt, emotional hurt, spiritual hurt.

They are most likely to be ignored when they speak of pain, have their words diminished by an assumption of diminished capacity.

They are the least likely to ever be seen as equal, as equivalent and entirely whole.

They are the victim of some of the most widespread and pervasive prejudices imaginable.

They are those that the Nazi's thought unworthy of life, they are those targeted by geneticists for non-existence, they need fear those who wear black hats and those who wear white coats.

They are educated only under protest, they are included as a concession rather than a right, they are neighbours only because petitions failed to keep them out.

They are kept from the leadership of their own movement, they are ignored by the media, their stories are told to glorify Gods that they do not worship.

That they are a 'people' is questioned even though they have a unique history, a unique voice, a unique perception of the world.

That they are a 'community' is questioned even though they have commonality, they have mutual goals, they have a collective vision of the future.

That they are have a legitimate place at the table is questioned simply because no one's ever offered a seat.

They are a people.

They ask for respect and receive pity.

They ask for fair play and are offered charity.

They ask for justice and wipe spittle off their face.

They ask to silence words that brutalize them and their concerns are trivialized.

They ask to walk safely through their communities and yet bullies go unpunished.

They ask to participate fully and they are denied access and accommodation and acceptance.

And this is NOW.

This is the people who have walked the land of the long corridor, who have waited at the frontier of our bias to finally be here, now. They have survived. They have come home. They have continued, silently and without fanfare, to take hold of freedom and live with dignity. They have given everything they have for what others take for granted. Their civil liberties are perceived as 'gifts' as 'tokens' and as 'charity'. Their rights are seen as privileges. Their movement is, as of yet, unacknowledged. They are a people recently emancipated, new citizens, who are tentatively discovering their voice.

It is a voice not yet heard.

It is a voice not yet respected.

It is a voice not yet understood.

But it is speaking.

And when it is finally heard. The world will change.

The 'R' word is an attack on a people who know discrimination. Tremble when you say it. Because those who should know better will be held accountable to those who know best.

from my mobile, in the hospital....

We have been in hospital for a week and a half now. On Wednesday, we were transferred to the Mater Childrens Hospital in Brisbane. Samara wasn't terribly impressed with her first Flying Doctors experience, but I have to say, it may have been cramped, but it sure beat 6 hours driving!

Yesterday we got transferred to a private room (aka isolation) because in addition to her breathing problems, she had started getting the most foul sloppy nappies (diapers)! The nurses really bore the brunt of it when I was visiting a new friend upstairs! Glad I wasn't here for it!!

Anyway, while having our own room and bathroom is great, there is a significant disadvantage to not being able to play with the toys that are here! We couldn't bring any with us, because there was an 8kg limit on our luggage, which restricted us to 2 outfits in addition to what we were wearing. Here's a not very good picture of the inside of the plane. Max (Mahalia's doll) is waiting with me for the ambulance to get there with Samara.

And a not very happy girl strapped in, and really not feeling well. Normally, she would have fought being strapped into a position like this, but she just lay there for the whole trip. Needed oxygen for about an hour on the flight, but apart from that, just lay there giving the dr the evil eye!

So today, Mahalia and I went out to the shops. And Henry the Octopus (as seen below) was one of our op shop finds. Here, Samara has set him up to watch The Wiggles with her. Pity he's facing the wrong way, but hey, it was a nice try!

We should be out of here tomorrow, which I am in two minds about. Don't want to sit in the car for 6-7 hours tomorrow! But would be good to be out of hospital! Hopefully I'll get some more tshirt designs to you once I return home! Welcome to the start of the southern winter everyone xxx

The comments people make

Have you ever wondered what goes through people's minds when they say the things they do about our special kids?

I have had several over the years. "Did the tests not show it?" What? Are you saying we would have been able to avoid being the parents of our beautiful daughter, who is sitting right here in front of you, if the tests had 'warned' us??

"I'm sure she has a mild form." No, actually she has it in every cell of her body. It is the most "extreme" form there is! Does that make you think any less of her? Cos I don't.

"I'm sorry." What for? Your comment? Better not to say it then!

"They are so loving/happy etc". Who are "they"? My family? Children under 5? Those of European descent? Oh, you mean her Down Syndrome? Whoops, missed that one!

Or, what about today's one? One of the most common ones I have had. One that inspired the following design (which I have yet to upload to Cafe Press). "I know someone who was told her baby would probably have Down Syndrome. They offered her a termination. But the baby was born perfect!" Ummmmm, MY baby is PERFECT! And are you implying that it's a good thing she didn't terminate JUST because the baby was perfect. Like it wouldn't have been such a tragedy if the baby HAD had Down Syndrome...

And this whole line of thinking led to this design as well! I won't be putting it on Cafe Press. It is more just an

expression of frustration at the fact that in Australia 98% of babies prenatally diagnosed with Down Syndrome are aborted.

Wanna be famous??

Ok, maybe not famous in the big name star way, but if you want a whole bunch of parents with children who have Down Syndrome to admire your little star who also happens to have Down Syndrome, then I have a great opportunity for you!

A friend of mine is collecting photos of children with an extra 21st chromosome to put on a montage she is compiling to go with this ---------->>>>> gorgeous song, that her mother in law wrote for her son, JJ.

Click on the play button in the right hand column to here the song.

If you have an angel you just HAVE to share with her, please contact her at

terakstacey@gmail.com and she will send you your own copy of the song, along with a model release form to complete and send back with a picture of your little darling!

The dreaded onset of winter

Time for something more personal....

Here in Australia, the days are getting shorter, and the nights are getting colder. Admittedly, not as cold as my native New Zealand. But cold enough to put the oil column heater on!

And with the winter come the colds and flus. And hospital visits. Anyone who's child has respiratory issues will know what I mean. For us, a regular cold means predimix, oxygen, sats monitors, nasal suctions, and sometimes IV's and adrenaline. And this year's cycle has begun!

4am Thursday morning saw us at the ER with a gasping 2 year old. After a few hours on oxygen and predimix, her sats were back to normal from the mid 80's where they had been sitting, and we were sent home to get some peace (the ward - if you could call it that) at the local hospital was being renovated and was VERY noisy!) before returning in the evening. Thursday night was spent trying to sleep at the hospital, where the childrens 'ward' (and I use the term very loosely - one room with 4 beds) was taken over by elderly men when the rest of the ward had filled up! So Samara and I were sharing a bed in a tiny room with no TV, and no door barrier to keep her in! Not a pleasant experience overall!

Our local hospital is probably down there with the worst of the hospitals in Australia. In a town of 7,000 in Queensland's South West, we are miles away from anywhere, and the staff are well below par with those we dealt with when we were living in Brisbane. Rather than having her on constant sats monitoring, they just checked on her once every 2 hours. Not good enough for a child who has sleep apnea, and who I had to stay awake to nudge whenever she stopped breathing! I'll be kicking up more of a stink if she ends up back there, I can tell you!

Anyway, she came back home yesterday morning, but didn't have a good day or night. I have been up with her since 4 this morning, with her teetering between being well enough to stay home, and sick enough to be in hospital! If we had a better hospital, I probably would have taken her in, but really, at least at home we could monitor her constantly!!

Last night was her last dose of predimix, so tonight may be worse. We'll just have to wait and see.

And this is the down-side of Down Syndrome. The sickness, watching Samara literally punching herself in the head, and bang her head against the wall because she is frustrated at not being able to breathe. And then, dealing with a hospital that is not doing enough to help her.

I wouldn't change her for the world. But, oh, how I wish I could change this aspect of her extra chromosome.

What things do you find the hardest about your LO's disability? Is it the day to day care, the health struggles, dealing with the so-called professionals? I really want to learn what it is like for all special parents. It is so easy to get into our own little specialised worlds. To become experts on a particular condition. And to forget that others are struggling too. I would love to hear some of your stories. To expand my horizons, and open my mind to the lives of others, so please share in the comments, or let me know if you would like to guest blog your story.

In the Beginning

The very first Awareness design I made was this one......

Samara was only a few months old, and I was still struggling at times to come to terms with her diagnosis. I saw this phrase online, and wanted to do something special with it. So I had a bit of a play around. I'm not an artist, so I had to put my thinking cap on. I could picture what I was after, but wasn't sure what the next step should be.

Then I found a photo I had of 3 of my girls on the way back from the Royal Brisbane and Womens Hospital to Ronald McDonald House. And, totally unlike her mother, there was my daughter in a perfect size 8 pair of jeans!! (size 8 is close to as small as you get in Australian sizing). So with a bit of playing around, and a fair bit of swearing, I managed to trace them using only a very sore finger and the silly mousepad on my laptop! But, I was pleased with the result, and I was starting to turn the corner from sadness into pride!!! And that was what really mattered!

In fact, I had so much fun doing it (well, completing it anyway) that I went on to design some more. Some were based on saying that have become part of the disabled community, and some I came up with on my own. Over the next few days, I got onto a roll and made the following designs.......

Some of these have been uploaded to Cafe Press, and some to www.zazzle.com.au/justjuniors. Each upload takes around an hour to do, so not everything is on both sites!

Recently I decided to start selling my designs at my Facebook store www.facebook.com/justjuniors and started by making individual transfers, and buying t-shirts from the likes of Target to iron the transfers onto. But there were too many what-ifs, and the black in one of the ones I made Samara ran in the wash. They also took extra care - needing to be handwashed.

Lets face it, what parent, let alone parent with a child with special needs, has time for handwashing? Not me, that's for sure. So that's when I decided to go hunting for a business that could make the t-shirts for me. With the help of a dear friend, Brooke, I found the Zazzle site, and then checked out the Cafe Press stores too.

Expanding into this market has meant that I could offer you products other than t-shirts too. From magnets and badges, to ipad covers and shoes. The range was really impressive.

At this point, the only place offering the shoes is Zazzle, and the only place offering customisable designs (add your own name, disability etc) is Cafe Press. Hence the reason for offering my designs at both places.

I hope you enjoy browsing through my stores, and if you would like to see something made for your/your childs disability, please let me know! I would like everyone to be able to promote their causes, not just those of us whose kids have the more common disabilities!

10% Discount

Cafe Press is currently offering 10% off through participating stores (mine!) when you spend $40 or more. Just enter promo code: AMAY1140 at the checkout!

Here's a sneak peak at a few of the designs....

Next time I will start sharing the stories behind some of the designs.....