Monday, June 22, 2009

Jumping the Gun

Well, tonight, I once again showed my true colours. We looked up the immigration website, and it looked like we were no longer able to apply for Permanent Residency. So I got all upset. I managed to not get to the point of blaming God. That would have been my first reaction not so long ago. But I was mad at the government. And mad at Michael for not applying sooner.

Well, it turns out, that if we get a move on, we can still apply. Well, not until we get our tax money, but believe me, I'll be pushing for our applications to go in ASAP!!

I still have such a LONG LONG way to go. Every time things look dismal, I resort to my old favourite - depression. Well, it's not really a favourite. But it does seem to be a habit or something. I never give things long enough to pan out. And I don't seem to have the ability to say 'who cares, whatever Lord'. It is an area I really need to work on. If Michael gets angry (something that is more frequent than I would like), I invariably think about leaving. If our residency status looks hopeless, I immediately think of going back to NZ. My stickability levels are pretty pathetic really.

Lord, I have so far to go. Please help me to get there.....

Monday, June 15, 2009

Home again

Well, after spending a couple of days in the Emergency Ward at the Royal Children's Hospital, we were sent home, with a still sick baby. It had gotten to the point where it wasn't worth the risk of staying. They had several cases of swine flu admitted, and everyone was running around in masks. Here is Samara doing the Jailhouse Sulk.

Samara slept ok last night, but was still having quite a few apnoeas. The hospital dosed her up on steroids before we left, and were hopeful that these would carry her through the worst of it.

Poor Michael spent his 40th birthday at the hospital, and now, today, has woken up with a tummy bug! So he is off work and feeling pretty miserable! Samara has been throwing up a lot over the last few days, so maybe there is more to it than we thought.

Tara, if you are reading this - I hope Simeon is ok, and you are coping with all the drama. We have been so blessed in that Samara doesn't have any significant heart problems. My heart and prayers go out to you.

We have FECS coming out tomorrow to assess Samara for eligibility for Physio, OT and Speech therapies. Because we are not Australian Citizens, we are theoretically not eligible, but they are going to look at it from the angle that Samara was born here, so should get the help. I hope it works! Because she is actually a New Zealand Citizen by Descent, not an Australian Citizen. She doesn't get citizenship here until she is 10. But she does have an Australian birth certificate which is all they have asked to see.

Michaels mum and her hubby are coming over to Australia for a week on Thursday. They are staying down on the Gold Coast, so we are going to go down there for the night on Friday. We will be staying at Seaworld Resort, which will make a change from our usual holidays in caravan parks! Hopefully we don't have any sickies.

I have bought some bits to make a couple of mini scrapbooks for mum and Michaels mum. Now I have to actually go and make them before she gets here. I am thinking I should go and get enough bits to make one for dad and Alicia too. But, annyoningly, 2 of my printer inks have run out, so I need to deal with that too!

I guess I should really go and get on with it.

Sunday, June 14, 2009

Hospital Again

4 Nights ago Samara started having trouble breathing, and we took her in to the Redcliffe Hospital. They basically just did some obs on her, and suctioned out her nose, before sending her home a few hours later. The next 2 nights, I sat up with her all night keeping an eye on her. Then in the early hours of yesterday morning, we took her to the Royal Childrens Hospital. She is still there now on adrenaline, steroids and oxygen.

I am totally exhausted, and about to go to sleep (I hope!). And poor Michael will be spending his 40th birthday at the hospital!

We have FECS coming out on Tuesday to do an assessment on Samara, so hopefully we will be able to access physio, speech and OT through them. Then after that, I have a meeting with the DS association about taking photos for them for the DS Week posters. Should be fun!

Well, I know this is a bit of a pathetic entry. But I am tired. So tired that maybe I am just dreaming this. So I am going to try and catch some ZZZ's before heading back up to the hospital....

Night All.

Wednesday, June 10, 2009

On Sickness and Babies

Well, as we head into another winter, so too, do we head into another round of sickness. While I am grateful we no longer live in the truly freezing climate of New Zealand, we haven't become totally exempt from the colds and flu's that are sure to do the rounds at this time of year.

We have all been down and out over the last week or so. But now, it is Samara's turn. Poor thing. She really does suffer when she gets a cold. In the darkeness of night, she suffers the most. And then she only has us to turn to.

So it was, that at 1.30am this morning, I decided that she had had enough. She had noisy breathing ever since she went to bed, but by 1.30 she was really struggling. Her wee chest was really heaving, and her breathing was erratic. So I woke Michael, and we took her up to Redcliffe Hospital.

First we had to brave the inquisition at the door. Had anyone had the sniffles? Well, Yes. That's why we're here! Had we been overseas? Not that recently. Had we visited anyone who had been overseas? No. (Whoops, we remembered later that friends we had visited had just returned from Thailand!) Anyway, we were let in, went through all the motions, and were seen pretty quickly. Thankfully, after several hours, and some suctioning, we were allowed to bring her home, on the proviso that we take her back if she gets worse.

Today she is a lot sicker than yesterday, so really, I won't rest well tonight, as I am expecting to have to go back up there. Hopefully that won't happen, but listening to her breathing now - I'm not going to get my hopes up too much just yet! The hospital are especially concerned because of her laryngomalacia, as this means she could go downhill a lot faster than other babies would. But given our past experience with respiratory illnesses, they felt that they could trust us to act quickly if the need arose. Also, we are only 1.5km from the hospital which was a big factor.

As for me, I am going to finish up a couple of jobs on the net, then I am going to have a sleep! I didn't get to sleep til about 6, and Samara woke at 8. I need to be fresh in case we have to go back tonight!

Sunday, June 7, 2009


Maybe because it's one am, and I can't sleep, I have been thinking and meditating on my faith. I have been reading The Way of the Master by Ray Comfort and Kirk Cameron. This has a lot to do with my current line of thought.

I have always believed in God. The God of the Bible. I believe that the Bible is His written Word. But, I've always had a part of me that has a problem with Modern Christianity. I could never fully put my finger on it. But I knew it had to do with the abundance of once-a-week Christians. Hypocrisy is rampant in the church. But why? If those who claim to love the Lord aren't showing it, then what is wrong?

I am finally starting to get some answers. Well, they are starting to come together anyway. It comes down to God's Law. Modern Christianity teaches that we are no longer under the Law of God (eg the 10 Commandments). That Jesus, by grace, has taken us out from under the Law. Yet, Jesus himself said that he didn't come to abolish the Law, but to fulfill it. So, what did He mean?

If we look to the 10 Commandments, we can see ourselves for who we really are. We have all broken them. But to what extent? And does it matter, as long as we are basically 'good'? What is the definition of 'good'? Well, take the commandment that says Thou Shalt Not Kill. Well, I have never murdered anyone. But, the Bible says that God sees Hatred as Murder. Uh, Oh. That's one I have harboured in the past. Thou Shalt Not Steal. Well, I don't see myself as a thief. But, then I have been given too much change before, and not mentioned it. Even now, I get tempted not to point it out when that happens. Thou Shalt Not Covet Thy Neighbour. Man, where do I start on that one? I am ALWAYS jealous of what so-and-so has that I don't. I am really starting to get the idea that I have broken a whole lot of God's Laws.

Now, if we break man's laws, we can be taken to court, fined, jailed, etc. Not something we ever want to happen to us, but something we expect to happen to anyone who wrongs us!! We have this God-given sense of justice. We know in our hearts when justice has (or hasn't) been served.

Well, in God's position of judge, he can only be just if we are punished for breaking the Law. To overlook our transgressions, would be to say that good and evil are subjective. That they don't really matter. But, therein lies a quandry. And that is, that God is Love. Now, if I love my child, and that child commits a crime, what is my responsibility? Well, some would complain that the justice system is unfair on poor Johnny. Some would wash their hands of Johnny and all his acts. And some, especially if he was truly sorry, would help Johnny out - maybe paying his fine for him if he was completely unable too.

Well, out of love, that is what God did. He paid our fine. But to understand that, we have to understand that we NEEDED Him too. We commited the crime, but He did the time! But, if we don't understand the DEPTH of our sinfulness (or darkness, or badness, or selfishness), then we won't be truly grateful for what He has done. We need to understand that the only options for us are Hell (a word that is not very popular in it's true meaning), and Heaven (via grace). But that Grace can only come once we have become fully and painfully aware of our shortcomings. We can NEVER be GOOD enough for Him. Now, God loves good. He rewards good. But no matter how much good we do, we will still be guilty of breaking the Law.

If a paedophile has donated millions to children's charities, do we say to him 'oh, well that's ok then. Your generosity outdoes your crimes'? Of course not! And, in fact, we would do all we could to have a judge who thought this was ok stricken from the register! Yet, somehow, we seem to think that we can apply that same line of thinking to ourselves.

It is simply not trendy to talk about sin, and wrongdoing, and selfishness. We all think we are doing ok. We think, if there is a God, He will surely overlook such 'minor' things. We think He is here to be at our beck and call. His job is to sit up in Heaven, and hand out blessings. Healing the sick, Helping us win lots of money, Keeping us safe. Or we say that there can't be a God, because if there was, His job would be to prevent catastrophe and suffering.

Says who? God is God. Not a creature we can put in a box and tell what to do. He is the Boss. The King of Kings. The Lord of Lords. I have totally got to get over myself and realise that. I am here for Him. Not the other way round. And yet, He loves me enough to show me how I can be in relationship with Him. Not because I deserve it. I don't. But, because He loves me enough to pay the price for my crimes. Not to overlook them. Not to have a double standard that says we can bribe Him by being His 'friend'. We cannot go to Him on Judgement Day and say 'but I did such-and-such in Your Name'. We cannot impress Him. We are ONLY forgiven by His paying the extremely high price of our sins. But unless we understand that we deserve the punishment, how can we ever be grateful that he has saved us from it?

And that is what is wrong with Modern Christianity. We have been told to come to Him. He is good. He is love. He will improve your life. He is your own personal genie.

Sorry folks. That's not how it works. He is righteousness. He is justice. He is perfection. He is worthy. He is the one who gives us our every breath. And until we realise this, we cannot come into the beauty of His glory, His love, His goodness.

I spent so many years asking God why? Why me? Why am I always sick? Why have my kids had various ailments? Why am I poor? Why, why, why? But, Praise God, He has bought me to a place, where I can say that I will trust Him. I will trust His judgement in giving me a precious baby with Down Syndrome. I will trust Him when I am laid up with broken bones. I will trust Him when I am feeling ill. Not my will, but His.

And as for the Great Commission. Sharing my faith. It is something I did with gusto when I was a new Christian. But all my 'converts' didn't last. I didn't get it. Until now. Now, I know that I was promising them something that God never did. I told them they would have 'Peace, Joy, Love'. That's not a reason to come to Christ. We should come because we owe Him. We are actually allowed to come to Him out of a Holy fear of the torment that follows the Judgement. So I kept quiet about God. I have kept His offer of Eternal Life a secret.

There are many out there who will hate what I have to say. And there will be times I will offend people. But I am coming to understand, that if I say I care about others, then I HAVE to care about their eternal well-being. Hell is not just where the party-goers spend their afterlife. Hell is a real place of eternal torment. I cannot bear the thought of another person going there.

I am sorry if this has offended you. I am no better than the next person. I deserve to be punished. But I have been saved. Something that I am not worthy of. And something that I am bound to share. I am bound by my Love for Him. And I am bound by my Love for You. Anything less would be to make me like a fireman who is so busy sucking up to the boss, that he fails to save a trapped child in a fire. Something that many in the Modern Church is guilty of. Something that I am guilty of.

Saturday, June 6, 2009


Well, we got to Seaworld on Monday, and just barely got back too! We got caught in a traffic jam on the Gateway for about an hour and a half from when we were 15 minutes away! It meant we got to the restaurant half an hour before closing, so they charged us kids prices and threw in free drinks! Anyway, apart from my ankle getting really sore, we had a pretty good day - even though it rained! Here's some of the scrapbook pages I made of the day:Mahalia wasn't allowed to hold Samara while the ride was going, but she was more than happy to pose for a picture afterwards! Samara wasn't impressed when the ride stopped, and tried to rock the horse to get it going again!
Samara was totally transfixed with this stare on her face right through the Sesame St Beach show! It was as amusing to watch her as it was to watch the show! Somehow, I think she will be a fan;) And, don't tell Sara, but I think she was just as excited to get some attention from Ernie as Samara was! LOL
Sara and Mahalia, Renata, Melody, Christiana and Bryanna on the Viking ride. I didn't get to go on any rides:( Well, except the Merry-Go-Round, and the helicopters, which don't count on the thrill scale!) I spent my time looking after Samara, nursing my ankle, and taking pictures!
Thankfully, on the way home, my friend Tracey drove. Considering the time spent in the traffic jam, I am so glad she did! Dinner was nice, but rushed, then we all got home exhausted!
The rest of the week has been a bit slow. I have had a cold all week, so have been laying low. Some of the others have had it too. Just glad that we're not going through it all in NZ, where the weather often meant I got chest infections with my colds!
I am considering getting a sleep study done on Samara. She, like her sisters, seems to be prone to apnoeas. There has been a discussion about them on the Down Syndrome forum, and apparently 60% of DS kids have them. The other night, I found Samara blue around the lips, eyes and nose. Her monitor wasn't alarming, so it took a couple of seconds to click that this was an obstructive apnoea (not central like Sara used to have) and therefore she was moving still. Gave me a bit of a fright when I realised. She has had a few other episodes, but they seem to be getting worse. In my past experience, they have gotten better with time, so Samara is quite different to what I am used too. From what I understand, the other parents have noticed them getting worse with age too. Now I just don't know whether to get on to it now, as she may be able to get help, or to wait until it is worse, and more likely to show in a sleep study. After our experience with Sara, I am worried that she would have a good night on the night of the study, and then we wouldn't be taken seriously. I don't know whether she has good nights and bad nights. Only that she has them. I also don't know if it's every night or not. It's so hard to know what to do. I want to do it when the time is right. Also, it seems that the paeds here don't really take it all that seriously. I have asked the others on the forum what they think, and will try discussing it with our GP first.
Oh, and to make life fun, the girls have got headlice (again!) I am really getting sick and tired of them. There's a couple of girls up the street who keep getting them at school, then passing them around. It's not their fault, but sometimes I don't want Mahalia playing with them or the kids they play with. But what can you do? We are all going through the treatments today, so hopefully we will get rid of them all. Speaking of which, its nearly my turn for the shower.....