Reflections on Disablility

Ever since Samara was born something has been plaguing me. Should something be done to 'fix' our kids, or does accepting and loving them mean accepting the way they are and not trying to change it?

Is Samara's whole personality, or even her human-ness tied up in her disability? I know she would seem like a different person if the DS were taken away suddenly, but is that a good or a bad thing?

When we were first given the diagnosis, the only hope I held was that we could give her a 'normal' life if we found out about the alternative treatments. So I jumped online and began my search. You would think it would be fairly easy, considering these treatments have been around a while now. But it took weeks of searching, until I found a few that looked promising. Basically Nutrivene (a Targeted Nutritional Intervention) and The Changing Minds Foundation, which uses a combination of natural therapies with prozac.

Well, I don't know about in the States, but in Australia, it is not so easy to get a script for Prozac for a baby! So we decided to go with TNI. We ordered the stuff (which turns out to taste terrible), and started on our way.

After 6 months, we ran out of supplies, and simply haven't had the money to renew. Now, there is no major research been done into how effective these miracle cures are, and particuarly with TNI, there is the obvious implication of the hundreds of dollars they make out of you for every order you place. Changing Minds is a bit different, as they pretty much give you the information, but don't sell the products.

But in trying to decide whether or not to continue persuing these or any other 'treatments', I am left asking myself a difficult question. One that doesn't seem to have a real answer.

I love Samara just the way she is. There are aspects of the Down Syndrome I don't like. There are other aspects that are totally awesome and I wouldn't want to lose.

But this isn't about me. It's about her. It doesn't matter what I want, like, need etc. It's not about whether or not I am happy with her diagnosis. The real question is 'What is best for Samara'?

Is she better off if we can raise her intellectual ability to within 'normal'? Is she better off if she doesn't 'look' like she has DS? Would she have a better life if we could make her appear as 'normal'?

Or is her disability actually a blessing for her? Is it really so bad that she doesn't ever have to worry about the world ending tomorrow? Is it a problem that she won't be a doctor, lawyer (or worse) a politician? Does it matter if people make assumptions about her because of how she looks (which is incredibly adorable IMHO)?

I struggle to find the answers to these questions. Questions she is too young to understand. But questions that beg answers now, while she is young, and there is a chance to change things.

Questions that are clouded by my own wants and needs. I personally have gained a lot through having a Special Needs child. But why should she 'suffer' (if indeed she does) just so I and others can learn from her?

Every human is born with potential. But is life really all about doing all we can do to reach the limits of that potential? Is it such a bad thing is Christiana becomes a stay at home mother of 12 (her current ambition), rather than using her brain (she is pretty intelligent) and becoming a paediatrician? (as our neighbour is trying to push her towards).

Is it okay for Samara to stay intellectually disabled, or should we try and extend her capabilities to their limits? Which is better for HER?

Tutu's and Superheros

As I mentioned the other day, I am going to start collecting dress up costumes for children who are in hospital at Royal Brisbane Childrens and The Mater Childrens hospitals with life-threatening conditions.

I have been doing a bit of thinking about how I could go about this. We are moving next week out into the middle of nowhere, so I will be doing this to co-incide with Samara's appointments at the two hospitals.

I am going to approach the Starlight Foundation (once I know I have enough support to keep this up as I can't do it on my own) and see if they would mind passing on the gifts to the children, as they meet children on every ward, and I didn't want to limit it to oncology. This would also remove any burden from the hospital staff in trying to keep track of it all. I think they already have enough to contend with! LOL

If I get enough support and it becomes popular, I would love to find people in other areas to do the same thing for their local childrens hospitals. But for now, it's just Brisbane (although feel free to send stuff from anywhere!!)

Also, if you would like to help, but don't have the time etc, I will accept donations of tulle, non-roll elastic, crochet-style headbands (available at Terry White and some of the discount type stores), ribbons, and fabrics suitable for making hero capes for the boys. Alternately gift cards for Spotlight or Lincraft stores could be used for buying fabric. If I get enough support, I will also approach some stores to see if they will donate or discount some fabrics for us, so maybe we could all meet somewhere and go do a bulk buy.

There are several free patterns out there on the internet for tutus and for hero capes. I would advise doing a google search, as it would be nice to get some variety going. Also, some styles may suit some people's budgets, sewing abilities, likes and dislikes, etc better.

If you want my no-sew directions, let me know. These are the ones I make to sell, so please only use these directions for this charity.

At this point, I will not be doing anything to register as an official charity. The paper work isn't really worth it for something so small scale that might not even take off. If we got to the point of doing this country wide on a regular basis, I would reconsider this option.

And, I think that's about it for now. If you would like to help out in some way, please contact me. When Samara was born, we spent 4 months at Ronald MacDonald House. We saw a lot of very sick kids. My heart would break for them, and I really wanted to do something for them. If this can put a smile on a childs face, it would mean the world to me, and more importantly their families.

And those of you with children blessed with an extra chromosome, I am sure you know about the statistics for our kids with the likes of leukemia. I think it sits in the back of all of our minds as something we never want to face. Well, these families are facing it and living with it every day. If you are at all able, please help me to bring a little bit of cheer into their lives.

Sorry for all the grovelling. It is just I am feeling very passionate about this right now, and getting it off the ground is the first hurdle. If I don't get support at this stage, the whole idea is likely to fizzle out. But if we can get it up and running, then we are more likely to be able to expand and share the love around!

The Last 5 Months

Ooops. I didn't realise it had been so long since I checked in here. I keep meaning to do it, but there's always something else happening and I don't get around to it.

Thanks to all who sent their condolences when Jes died. Even now, 6 months later I have my times when it all hits me like a flood and I cry yet another river. I don't know if it will ever be entirely real. Michael's other brother had a little girl who at 19 months was burned with boiling water. 4 days later she died of septicemia. I thought I'd never recover from that one. It was 8 years ago, and sometimes it still feels raw. But not in the same way. We didn't know her (they lived in the North Island and we were in the South Island) except through pictures etc. And also what happened to her was a horrible accident. There's a whole separate layer of things to come to terms with in Jes's case.

Anyway, I don't want to bog myself down with all that again right now, so I am going to switch gears and do a bit of a fill-in.

In June, Michael started a new job doing IT for a shire council in Roma (which is 7 hours inland from Brisbane, and only has 7,000 people). The girls and I are still in Brissy, but will be moving up there at the end of next week. Michael loves it, but we really don't want to go. I like having all the access to services, shopping etc that the city holds. But, on the good news front, we should be able to get Permanent Residency through the governments rural jobs scheme, so that would make it worthwhile. The current plan is to move back to Brissy by the time Samara is school age so she can go to a special school. I'm not a big fan of mainstreaming (having worked in that situation during teacher training) and I don't know that homeschooling Samara when the others have grown up and moved on would be fair on such a social child. But that's a few years away yet, we'll wait and see.

At Samara's regular paed checkup in May Dr Slaughter (yes, that's his real name!) decided based on Samara's sleep study that she needed her adenoids out. She was also failing her hearing tests, and had glue ear, so they put in grommets as well. They were going to take out her tonsils, but when they got in there they decided it was too risky. Her airways were so narrow they couldn't even get a ventilation tube down without giving her steroids. This meant that to get at her tonsils, they would have to tip her neck back a long way, and with the neck instability thing our kids can have (and there's a higher chance with her, as all my family has Ehlers Danlos Syndrome - a joint instability problem) it just wasn't worth the risk. Anyway, the upshot of it all was that she almost never snores now!! Her hearing went from being moderate to severely affected to being moderately affected. Not as good as we hoped. So she is waiting for hearing aids now. She hates anyone touching her face or ears. She won't wear her earplugs when she has a bath (to keep water out of the grommets). So I know that getting her to wear hearing aids is going to be real fun. NOT!!

Speaking of Samara, we are going to be having an early 2nd birthday party for her on the 4th (the day before we leave) so that will hopefully be fun. We're going to go with a Wiggles theme (this will be the 3rd Wiggles party I have done over the years!)

Last month, Renata surprised us with a visit home for a bit over a week. Michael knew she was coming, and I had a vague suspicion but didn't really know. It was nice to see her again.

Samara's new tricks include learning a lot of songs. Her favourites include 'rock-a-bye your bear' (Wiggles), D_O_R_O_T_H_Y the Dinosaur (wiggles again!), Twinkle Twinkle Little Star, and the welcome song they do at school. She is good at picking up the actions, and attempts the words too. She isn't walking yet, but can stand herself up without using anything to climb against. In the morning she asks to 'det up', then yells at the girls to 'det up' too!

As for me, I have started a new hobby business making kids clothes. Here's a few samples....

Samara modelling a Tutu Dress which converts to a skirt to fit up to 6 years.

My lovely niece Jayde in the dress I sent back with Renata (despite it being a New Zealand winter, and the poor child freezing!!)

My other gorgeous niece (who I missed meeting when we were in NZ), Autumn who is wearing a smaller version.

Amy modelling the dress as a skirt, and her little sister Emma in the dress. (These two are my adorable neighbours who we will miss terribly)

I have also been refashioning clothing by taking good quality used clothes and making them into something worth having! This cute little dress used to be a hideous mens shirt! In fact, Bryanna suggested we call it the 'ewwww, ahhhh' dress. Because it used to be 'ewwww', and now it's 'ahhhh'.

Another refashion (a bit small on Samara, but she was the closest model I had!). This one is made from new stripey fabric and button, new singlet with the bottom removed and given a 'lettuce' edging, a preloved shirt (for the shoulder frills and the skirt frill), and a pair of pumpkin patch jeans.

This one is technically refashioned (I am keeping this one for Samara) but I will be making them from new materials for sale. It is a corset top and a 3 layer skirt. The picture was taken at night with flash, so it isn't the best, but just believe me when I say it is adorable!

If anyone wants to have a look, become my fan on Facebook. Just do a search for Just Juniors. I am actually running a competition til the end of August (not much time left), where you go in the draw to win a Tutu Dress. One entry for each friend you refer who becomes a fan. (just make sure they let me know who sent them)

Well, it's 2.20am, and we have therapy in the morning, followed by a visit to some ex-Kiwi's we used to vaguely know (but didn't know were here until Mahalia ran into them at a homeschool sports day last week!). So I'd better go get some sleep. Tomorrow I will try and get here a post about the Tutu Drive I am doing to get little skirts for young girls who are seriously ill. I will be asking for donations of any dressups (boy or girl - seems a bit mean to just do the tutus...) but they must be new. Keep watchin for further information.........

Home and Sick

Well, I can't say our trip to NZ was the happiest, but I am glad we went. The first week was very hard, trying to come to terms with Jes's death. I still have my teary moments, and I guess I always will.

We tried to give the girls some happy memories while we were there. We got to meet my sister Sonia's baby - Jayde. Man, has that child got a good set of lungs! Sonia was horribly jealous of our placid little girl:)

We got to take Alicia out for her 21st (which is actually today, seeing as it is 3am in NZ). I am still baffled as to how I got to be the mother of a 21 year old!!

Sadly we weren't able to stay long enough to see my youngest sister Rachael's baby. She is due on the 5th, so I guess I'll just have to go back! LOL.

Samara had a great time in dad's huge lounge, and got in plenty of crawling practice. She has her own unique technique which involves moving the left leg in the normal way, but then stiffening her right leg and pushing with her foot. But hey, whatever works!! She was a little confused by all the people who seemed to know her, and found it a bit much at times. But, true to form, she loved being the centre of attention.

One of her funnier moments was when her and I were playing with a toy that involved putting some little round (almost ball-like) butterflies into a flowerpot that tipped over and sent them rolling. When one rolled across the floor, I told her to go get it. I repeated "you get it" a couple of times. She set off to crawl across, then stopped. Thought about it for a moment, climbed up on me, then pointed to it going "et it, et it"!

Sara and Renata are enjoying their studies, although Sara is a bit baffled with all the psychology stuff she is doing! They were both really excited to see Samara, and were showing her off to their friends. Of course, who can blame them?!

The other girls were all happy seeing their friends and family, once they got through those first few days. They didn't want to come home, which was a bit of a bone of contention when it came to trying to get them to pack up all their stuff!

I got a sore throat on the Sunday before we came home. It is now Sunday again, and it is still really painful. It is the worst I have ever had, and the antibiotics aren't helping any. We have a rental inspection in the morning, and I have just been curled up in bed most of the time since we came home on Wednesday morning. Hopefully the agents will be understanding of the bombsite!

It's Over and Done. Or is it?

Well, yesterday was Jes's funeral. Not that it made it any more real. How can suicide ever be real to those left behind?

We went and saw her on Sunday, but it really didn't look like her. I think they were trying to cover her bruising, by having her chin tucked down. But what it did, was left her looking like she had 3 chins, and as if she was in her 30's not 18. But her hair was a beautiful as ever!

A friend of hers is a graffiti artist and tagged the coffin, decorating it with painted pink roses. Quite pretty really. Her middle name is Rose.

As for those of us who were there to say goodbye, the place was packed with people who loved her. In fact, it was said by the funeral director that if she had seen how many people loved her, she would never have done what she did.

Why do we always wait until someone is gone before we tell them how special they are? Maybe we should all have pre-funerals! That way we would know how loved we are!!

Later today Michael (and maybe I) are going to see Colin without the kids. Not that I have any idea what we can say or do. But I guess it comes down to being there. It hurts me so bad. I can't imagine what he is going through.

I also wonder how those without faith get through something like this. It must be awful to think there is no hope. Having said that, my faith doesn't hold out much hope for Jes any more. But I can't bare to think about that.

Suicide is NOT painless

The jury is in. The song is wrong. Suicide is painFUL!

Just 2 nights ago, my niece, Jess, comitted suicide. She was 18 years old. No-one knows why. She never left any clues. Personally, I wonder if she was really just going for some attention, but misjudged things.

You see, she hung herself. But not in the normal way. Her feet were on the ground the whole time. The rope was tied to a tree, that she simply leaned away from. Was she just unconscious before she could change her mind? Or did she really mean to do it?

If she meant to do it, why did she send her dad (Colin) at text message sometime in the 2 hours from when she sent it, and when she was found, that just asked what he was up to? No hidden meaning in that.

Did she think no-one would care if she was gone? I have been depressed. I have felt suicidal. I have thought the world would be better off without me. Thankfully, God has picked me up every time.

Now, I know, from bitter experience, that the pain that those of us left behind suffer is indescribable. It is totally unbelievable that this has even happened. My kids grew up with her. Renata and her even shared one of their birthdays.

She was such an adorable little girl, with the most amazing curls (I was so jealous!) As she grew up, she had her problems. Life can be hard in the teenage years. But no-one had any inkling that she was depressed or anything. Could this have been avoided? No-one will ever know.

Tomorrow we head off to New Zealand for the funeral. Alicia, Sara and Renata (our 3 oldest) are already there for their studies. I want to hug them, cry with them. But I don't want to go. I want to shut down and pretend that while I am here in Australia, everything is fine. But once I get to New Zealand, the truth will bore it's way into my very heart and soul. The tears are already falling. The anguish is already there. But I know it will get worse.

I keep going over and over and over the fact, that the day before yesterday was just an ordinary day. A day that should have remained ordinary. A day we would have promptly forgotten.

But now, it will be etched in our minds forever. The day that I learned that suicide is NOT painless.

So Amazing, You Are

I have just been watching a video on You-tube about a little girl (Gabby) who recently died after open heart surgery. Her mother is on one of the Down Syndrome forums I frequent. The song in the background is You're Amazing (or something like that!)

I have been in tears a lot lately. I am so scared about what is going on with Samara's lung, and with the bronchoscopy she has to have on Wednesday. The bronch isn't in itself a major surgery. It's about as minor as they come. But the only history of anaesthetic that Samara has isn't the best. She desatted into the 20's and caused a pretty big stir in the ICN. Also, there is the possiblility of them finding something that means further surgery on her lung. And that is a terrifying thought.

Young Gabby was such an adorable little girl. And watching the video and pictures of her, I couldn't help thinking that they had no idea at the time that these images would be all they would have left of their little baby. And, I am scared that we could find ourselves just like them. I am terrified of letting go. Of trusting God. No matter what.

I just want to pick her up out of her bed, and hug her so tight. I never want to let her go. She may have only been with us a short time so far, but I cannot ever imagine life without her. The last 16 months since she was born (and the months of anxiety before she was born) have been a massive rollercoaster. There have been high highs, and low lows. And I would go through them all again to have her in our lives. We have been so blessed, that I am scared we are running out of blessings!

Totally illogical. And there have certainly been some hard times associated with her diagnosis.

But I want the whole world to know, that Samara is one incredibly special little girl. She is 'So Amazing', and I love her so much that my heart is overflowing. Sometimes, we have to be faced with what the world would term as 'not so perfect', to realise what true perfection is. She has been fearfully and WONDERFULLY made. And that extra chromosome doesn't take away from that. If anything, it adds to it.