Thursday, December 31, 2009
So, today is a new day, and I am going to put in a bit more effort with the positives. This may seem a bit jilted, because I am going to try and answer the question about the wonders and joys, rather than just spilling my guts so to speak, so please bear with me.
Having had 7 children, I have been through all sorts of ups and downs with them. And, now that 5 of those children have been/are going through the teenage years, I am getting to the point where I am starting to reap both the rewards and the punishments of my parenting skills (or lack there of!)
While it is true that my older girls will have more choices ahead of them in life, it is also true that some of the choices they make could cost them dearly. I hope and pray that they do not get involved in some of the truly scary things out there like the classic sex/drugs/alcohol scenes. I see them struggle with making adult decisions that could affect them for the rest of their lives. I see them worry about what their friends think/say/do, and where they fit in.
As they get older, they become more aware of who their true friends are. Yet they continue to make wrong choices due to peer pressure. Their faith gets tested in ways I never imagined. They start to question everything. It is all part of growing up. But it is a loss of innocence. A loss of the wonder of being a child.
BUT, and here's where one of the biggest joys comes in, Samara won't loose that innocence and wonder. She is extremely unlikely to go down the drug route. Sure, she will go through some of the teenage stuff, and go through rejection issues, but, from what I have learned, she won't be likely to let that rule her life. She is likely to always keep the innate ability to come to Christ as a 'little child'. Something the rest of us loose along the way.
During the night, Veritee woke up (something Samara never does unless she is sick). It was so hard to comfort her. She was pretty good and all. But with Samara, I can just hug her, and her whole body just relaxes into mine. She absolutely LOVES hugs. Admittedly, sometimes she goes a bit overboard with her vampire kisses, and hair pulling - her way of getting you closer - but her enthusiasm for cuddles is awesome! But Veritee just doesn't do that. My other kids were like that too. A short cuddle was fine, but then there was other stuff to do and they wouldn't stick around for long:)
Samara has this amazing ability to touch the hearts of everyone she meets. She is so sociable. People just gravitate towards her. She is always so aware of people, and will sit there for ages 'talking' to them, watching them, etc. In fact, at playgroup, she is totally smitten with her teacher aide, and would much sooner talk to her than do stuff!
In our society we put way too much emphasis on IQ, when something that the world is lacking in is EQ. Well, our kids certainly bring a huge amount of Emotional Intelligence into our world. I don't know exactly what it is, but they have the most incredible people skills. And they love unconditionally. A pure, sweet love that is so much more than the superficial love that we see so much of today.
When each of my other girls met their milestones, I was proud and happy. But when Samara reaches hers.....well the joy is indescribable. It brings tears to my eyes every time. I just absolutely burst with pride and joy! I have seen the struggle that goes with learning a new skill. I have felt frustrated when she has been frustrated. But, oh, the joy of reaching each mountain top! It is an emotion that goes beyond all others I have experienced as a mother.
I have also found the whole experience really fascinating. Our other kids all grew and changed so fast, I bearly had time to register each new thing as it happened. But with Samara I get to sit back, watch, and enjoy the ride. I have learned so much about all the steps that go into acquiring a new skill. Who would have known just how important all those seemingly pointless things a baby does? It really is amazing to see it all unfold in slow motion, and with the guidance of her therapists. We really do miss so much in the development of our 'regular' kids.
When I had my other girls, I was pretty much 'on my own'. I had to muddle through learning all the skills I would need to bring them up. But with Samara, the help and support is incredible. She has a lovely Physio, and Speech therapist who are constantly there cheering us on. Her teacher and teacher aide at the Woody Point Special School are both incredibly lovely ladies. Every health issue she has, I have a miriad of professionals I can discuss them with - a lot harder with the other kids - they seem more willing to listen to Samara's problems than with the others.
I have inherited a whole new family. Because, that extra chromosome links us in a mysterious way to so many people around the globe, who have experienced that extra dimension in our lives. We come from all walks of life, and yet we share a bond that goes beyond anything else I have found. There is something amazing about finding others who just 'get it'. I can't explain it really, but those of you who have experienced this will know what I mean.
I have learned so much about myself. Not all of it good, but all of it worthy. As in, I have been changing, for the better. The value I put on life, on others is increasing. I have always been a caring person, but somehow, in the last year something deeper has been happening in my heart. My capacity for love is growing.
My bond with Samara has been strong out of necessity. Whenever I didn't feel like being up to the parenting task with the others, I would opt out emotionally. But with Samara, I have to be there. I have to put the effort into doing her therapy, playing with her, singing to her, whether I feel like it at the time or not. And that is a good thing. It stops me from withdrawing and sinking into further depression (something I have battled with all my adult life). And it strengthens the bond between the two of us.
Whenever Samara sees either Michael or I, her whole face lights up. She is so excited to be with us. She hasn't reached that 'ho-hum,I'd rather be doing other things' stage that most kids her age have reached. I love that she loves us so much!
I really do hate the health issues she has. But even these have a bright side. They make me appreciate every minute of her life. Because I worry about all the things that could happen, and because I have 'met' people who have lost their little ones, I really value the time I have with her. We have been really blessed, in that she has no heart issues, and I do worry excessively about her breathing issues, and the upcoming operation (more on that in a separate post), but I do like the way that these worries help to underscore and accentuate my love for her.
She has the most gorgeous eyes. How often do you get to see a child who has stars in their eyes? Well, my little girl has them. They are adorable!!
My life is more 'real' since Samara became a part of it. The things that really matter seem so much clearer. Sure, I still have plenty of unworthy hangups, but my ability to get past them is improving. And my ability to stand up and fight has improved. Sometimes I have to face issues that I would have let slide with the others. But no more. Now I have to get past my own insecurities and push for medical help, therapies etc. I am becoming a stronger person.
Another, unexpected advantage has been that I have gotten to see Michael in a new light. I tend to get really fed up with his attitudes and anger issues. He tends to be a bit of a 'grumpy old man'. But with Samara, I see his countenance changing. He relaxes. He laughs. He plays. He loves. He is the father to her that I wish he was with the others. Maybe, his heart will change toward them too, as he learns to have a fathers love for his baby daughter. He never had a decent role model. But, somehow, in one of those unexplainable ways, this little girl is showing him the way.
I could go on and on. I guess I already have. And like I thought it would be, this post has ended up a disjointed mish-mash! But I keep on rambling because I just can't find the words to describe the stirring in my heart. I keep hoping I will hit on it. That I will be able to put in writing the love I have for my little girl. But it is beyond anything that can be expressed in words. I wish that I could lay out those feelings for you. And that is why I wish everyone could have a T21 baby. Because there is no other way, than to experience it for yourself.
For those of you who don't know, Veritee is the youngest of Kerrigh's 6 girls (well, almost the second youngest of 7!) She was born at 30 weeks gestation, one week before Samara. They were due a day apart.
So, we met at the Royal Women's while our children were in the Intensive Care and then Special Care Nurseries, and we were at Ronald McDonald House.
Kerrigh was one of the first to bear the full brunt of my grief when Samara was diagnosed at 4 weeks of age.
Back in April, we went to stay with them. The girls' were 5 months corrected. I was petrified that I would find it hard seeing how much more Veritee was doing. But the truth is, Samara was holding her own pretty well, and Veritee was experiencing some delays. Now, don't get me wrong, I did worry about Veritee because, over the months Samara seemed to actually pass her in a lot of things. But, at the same time, it did make it easier to deal with when Samara wasn't doing too bad in comparison.
Well, as it turns out, Kerrigh was suffering from an anxiety disorder, and Veritee simply wasn't getting the stimulation she needed. Which, is actually good news as far as Veritee goes, because she has been getting a lot more of that stimulation lately.
But, today, while being overjoyed for Veritee, I was hit with a fresh wave of grief for Samara. Watching Veritee crawl, pull herself to stand, say quite a few words etc has been a harsh reminder that no matter how much Early Intervention we do, no matter how many dollars we spend on alternative therapies, no matter how much we pray, the truth is, Samara will always be left behind.
And it hurts. It really really hurts. I hate to see my baby girl sit there watching Veritee scooting around everywhere, with a real look of longing in her eyes. She wants to follow - to join the exploration. But she is stuck. She can move a little bit, but it takes her so much effort. I just want to cry out IT ISN'T FAIR!! Why does everything have to be so hard for my sweetie?
I know I have to get past this. If I have an attitude about it, she will end up with an attitude about it. For her sake, she needs to accept the way she has been designed. Because she was designed. She is not a mistake. We all have our crosses to bear. But for some reason, I wish I could take hers from her.
And yet, I do know how blessed we are to have her. A part of me wishes everyone could experience the sheer joy and wonder of having a baby with Down Syndrome. I find myself wishing all my pregnant friends would have a baby with T21. Is that bad? (of course, I would wish for them to have none of the medical issues that go with it!)
Anyway, I've said it now. I have had my cry. Time to move on. Thanks for listening.
Tuesday, December 15, 2009
It reminds me of school. When friends were hard to make. When you just can't seem to fit in, no matter how hard you try. Somehow, whatever social skills are needed just seem to elude you.
I guess it's the Aspergers traits I can see in myself. I find it hard to make friends, but I don't really understand what I am doing that turns people away. I genuinely care about others. And I do have some great friends and neighbours. But I still feel so much like an outsider. Like everyone is sniggering behind my back or something.
As dumb as it is, here I am at 3.30 in the morning, unable to sleep, because I am feeling rejected.
Did you ever belong to a group of people, who all seemed to click, but you were sitting on the outside desperately trying to be a part of them? A group where everyone gets invited to a special event except you? Where, for all intents and purposes, you should be as much a part of the group as anyone else. But something separates you?
What do you do, when everyone else is talking excitedly about their plans? Plans that you have been left out of.
Am I really that horrible to be around?
Thursday, November 12, 2009
To view the show, including past episodes, click on the link in the side bar.
Each episode lasts approximately 10 minutes.
Here is the first episode as a preview....
Wednesday, October 21, 2009
This time last year, we were enjoying our tiny new addition. She was 4 weeks old, and had progressed well from the Intensive Care Nursery, to Special Care. She was now 35 weeks gestational age. All was going well with her. We were just fattening her up ready to come home.We were blissfully unaware that our lives were about to change dramatically.On October 20 2008, we were delivered the blow that is Down Syndrome. We had absolutely no inkling that it was coming. We hadn't had time to duck, or even to flinch. We were hit full-on in the face with the news that our child would never be who we thought she was. At the time, it felt like a death. I felt like they had taken our baby and replaced her with someone else. Looking back, I still see the 'before' pictures as if they were before she had it. Dumb I know. But that is the effect that this late diagnosis left me with.The year since then has brought with it many ups and (no pun) downs. We have met some great people. We have had some good times. We have learnt some valuable lessons. And above all we have had the opportunity to get to know the most amazing baby.But there has been more than her share of sickness. More time spent in hospital than I care to remember. And many tears for the opportunities she may never have. I can't say I have a lot of love for that extra chromosome. I don't like the way it makes her so sickly. I don't like to see my baby struggle. And I don't like how every new thing she learns comes at such great effort and cost. But there is something special about that extra chromosome too. My appreciation for my children, for life, for others has grown beyond what I thought possible. And as she has grown over the last 13 months, I have seen a beautiful personality emerge. One who I would never have known, had it not been for that something extra.So it is a bittersweet memory. That day last year was the hardest of my entire life. But all is not lost. I still have my precious baby girl. Something that cannot be said for so many parents of children who are born with an extra 18 or 13. We were lucky. The 21st chromosome is the one to have if you are going to have an extra.But, I am sure I will cry. I will cry for the sickness she suffers. I will cry for the difficulties she faces. I will cry for the hurdles still to come. But then I will move on. I will remember to be thankful for one of the greatest blessings I have ever received.
Wednesday, October 7, 2009
Initially, Michael took her to the hospital on Friday evening. When she was sleeping, her oxygen sats were dropping. Unfortunately, he made the mistake of waking her up. She could cope when she was awake, so her levels were at 96% when he got up there. So they sent her home.
Saturday evening she was getting worse. So at 2am Sunday morning, we took her back up to the hospital. Lack of sleep over the last few days has made everything blurr into one. But, they decided to admit her as her O2 levels were dropping, and they needed to suction her and give her a bit of oxygen.
Overnight Sunday night they just had her on 4 hourly obs. Which meant, once every 4 hours, they would come in, half wake her attatching the probe, and write down the highest number they got. Now, as I mentioned before, being awake or disturbed causes Samara's to take deeper breaths, and her oxygen levels rise. So really they are getting a false reading. Anyway, after her not 'needing' oxygen overnight, she was sent home Monday morning.
We left just in time to drive straight to the Royal Childrens for her opthomology appointment. The good news, is her eyes are great!
Anwyay, I digress. She got worse again Monday night, so once again, we headed off to the hospital at 2 in the morning. And once again, they put the probe on her foot, and got a reading of 97%. The triage nurse is one we have had a few times now. She is really lovely, and really listens to us. So when she went to record the 97%, I told her to just wait a minute. And sure enough, as Samara relaxed, her sats dropped to 82%!
Being the lovely lady that she is, this nurse then triaged her at a 1 (the highest priority) and took us straight through to resus. She told the dr 'this mum has 7 kids. She probably knows more about this than you do. Listen to her!' Well, that made all the difference. Samara was admitted with continuous O2 monitoring.
Since then, she has worsened. She is now on constant oxygen, as her levels were dropping even when she was awake. She is completely miserable. They are suctioning her nose before each feed, or she can't breathe enough to drink. Even then, it is a long slow process. She is starting to get dehydrated. She may go onto tube feeds today - we will have to wait and see. Her nose is bleeding due to the repeated suctioning.
Because of our family history of asthma, and because yesterday she developed quite a wheeze, she is now also on ventolin by nebuliser. Yet another contraption to hate having near her face. She fights it all the way. She also keeps pulling out the oxygen probes. And we won't even mention the difficulties when the nurses are trying to stick a suction tube up her nose!!
Michael is staying with her at the hospital. He can sleep through anything. Not me though. I tried to sleep there after she was admitted yesterday morning. But with all the alarms and things, I didn't do any more than drift off for a few minutes at a time. So last night I got my first real sleep since Friday. But my body isn't used to sleep any more. I woke up at 4.45, and here I am typing my blog when I should be catching up on some sleep.
But I can't sleep. I am worried about my little girl. What if she gets worse. Last night she was still going down hill. Is she still? Or is she about to turn the corner and get better? Does she need me there right now? Is she awake and crying for her mummy? Or is she sound asleep? Does Michael even know? Has he slept through her having a bad night? I feel guilty for needing to sleep. I feel guilty because my house looks like a cesspit. I can't believe we had it looking really good on Saturday for a rental inspection. Now, it is just filthy! The girls aren't doing their jobs. They won't even touch the dishes! I am tired. I can't cope with this. If I am up and about, then I need to be at the hospital for my baby, not trying to kick some kiddy butts into doing the basic jobs that need done. The girls are old enough to keep things running for a few days. But it's really a waste of breath trying. I think after this is over, Renata will be moving out to the bus. She just doesn't pull her weight. The others then follow her lead.
On the plus side, I have a good friend, Deb, who has taken Christiana and Mahalia for a few days. She has been onto the girls to do what they are told. And she has also been bringing food up to the hospital for Michael and I. I don't know what we would do without her. We are completely broke (as in, had to borrow all Sara's babysitting money just to buy Samara a tin of formula) this week, so we just would have starved without her help! We just had to fork out $900 for a container and then to ship it, to store our stuff in, that has been living up in Childers since we moved here. The people who's property it was on needed it moved. So really, we had no choice and had to just do it, despite it meaning we would be left with no money. But why now??!!
On Saturday, Sara, Samara and I are supposed to be going down to the Gold Coast for our DSDownunder get together. We are going for 5 nights. I really hope and pray that Samara is well by then! I am just going to cry if she isn't. On the plus side, at least we get some pay on Friday so we can afford the diesel to get there! LOL
Well, now that I have had a bit of a vent, I am really loosing it tiredness-wise. I am going to try and catch a couple more hours of sleep before I have to go back to the hospital.
Monday, September 28, 2009
First up we have the cake. It was a bit of a drama. Elmo looked near perfect when I first made him. But then the Queensland heat got to him. The icing started to melt, and his eyes and nose slid right off his face! Now I really wish I had taken a photo right at the start! Anyway, here is the version that was as repaired as I could manage. The icing had lost a lot of it's volume, so the fur look never did get back to it's original plushness. I guess he was just like a real Elmo toy once a baby has matted his fur!
Samara didn't know quite what to make of this new Elmo when she first saw him....
So she did what she always does when she sees an Elmo. She gave him a hug and a kiss!
Deciding that, while this Elmo didn't talk like most of them do, he could be forgiven. Especially since he tasted so GOOOOOD!
The resulting crime scene was not a pretty sight! CSI would have had a field day!
Fearing a wrongful death suit, Samara thought it might be best if she covered her tracks by eating the evidence.....
But the evidence was speaking for itself. With Elmo "blood" all over her face even AFTER daddy had put her under the beach showers!
So I tried to clean her face, hands, and arms with Wet Wipes.....
When we got home, she had a bath. Yet after these 3 cleaning attempts, she is still a red tinge!
Needless to say, there wasn't a queue waiting to eat what was left of poor Elmo after that.
Wednesday, September 23, 2009
Now, she is laying in her bed, exhausted after another night of coughing. I am laying on my bed after another night of patting her back and checking her sats.
She really couldn't be bothered with much this morning. Although she did really like her new Elmo Pillow book. She also liked Up, Up Elmo. Not too sure what Dorothy the Dinosaur was. And we haven't given her her swing yet, cos the landlord is fencing in our yard today, so there is nowhere to set it up:(
I am enjoying the quietness of today, knowing that tomorrow we will go from only having 3 girls here, to having 12 when Kerrigh arrives with her 6 girls! Then things are going to be full-on. We have FECS tomorrow, then I am going to meet Kerrigh and the girls at the bus. Friday we have Premmie Playgroup, then the doctors. After that I have to do the grocery shopping for the party, bake the cake, find someone to blow up the helium balloons I bought from the States (here is a picture of the best one!), pray (hard) that the weather will be fine Saturday (the clouds are rolling in at the moment!), make sure all the girls have their Sesame Street Tees ready to wear........I think I may fall into bed at the end of the day! Then Saturday I need to decorate the Elmo cake. Shouldn't be too hard, but it makes a lot of mess - and the kitchen here is a shoebox!
But I am really looking forward to the party. It is going to be such a huge celebration. Because we have so much to celebrate. We have been blessed with such a massive miracle in such a small package! They say the best things come in small packages - and in Samara's case I can really vouch for the truth of that!
Samara's breathing is sounding pretty whistly. I'd better go check her sats......
Til next time........
Tuesday, September 22, 2009
Now, at nearly 8kg, she is over four times her birthweight. She is totally convinced she is a big kid. She even takes one arm out of her carseat straps, so she is just wearing a seatbelt over one shoulder like the big girls! She is trying to walk. She is a fair way from it yet, but that doesn't mean she isn't going to try! She has learned some sign language. She shows definate preferences for what she does and doesn't like. Elmo, lollies, icecream, chocolate custard, chicken (not mushed up tough!) flashing lights, baths, bubbles are all worthy of enthusiasm. Medicine, nose-wiping, sitting in the car, babies who pose an attention risk are not:)
On the way to Kingaroy at the weekend, she ate more than half of Renata's icecream. We gave her another one, and Samara ate half of that too! In fact, she got mad at Renata for taking any for herself! She is even getting fussy about the bottle. She wants to drink from a cup. Not a trainer cup mind you. A real one. Talk about making a mess! Not to mention the fact that we have to be careful that she doesn't aspirate it by going too fast.
This past year has be frought with many difficulties, and much sadness. But it has brought so many joys and enriching experiences, that I find it hard to believe that it has all fitted into one year. In some ways it feels like she has been here forever. That we have been on this Down Syndrome journey forever. (and that's only been 11 months since dx). I was saying to Kerrigh the other day that the days in the nursery really seemed to take forever. Those 2.5 months felt like an eternity. But the 9.5 months since then have just flown by.
Tonight as Samara lays sleeping in her bed on the other side of my room, I am sitting on my bed listening to her wheezing breath. Hoping she doesn't end up in hospital on her birthday. That just wouldn't be fair. I wish I could take away this aspect of her disability. The rest isn't so bad. I just don't like seeing her struggle like this.
I sit here, and I watch her. And I feel such a huge wave of love wash over me. I am floored by it every time. It brings tears to my eyes. We really have been blessed beyond our wildest imaginings.
Samara - I love you with all my heart. Have a wonderful birthday sweetheart.xxx
Wednesday, September 16, 2009
Thursday, July 30, 2009
Monday, July 27, 2009
From what I have heard from other mums, their bubs have mostly had problems too, but it doesn't make it any easier. And there doesn't seem to be much literature out there about it either.
We are off to see the paed again tomorrow, so I am going to ask him for a sleep study for her.
We started at Woody Point Special School playgroup today. The teacher there asked me if she could hear ok. I had been a bit concerned lately cos she didn't seem to be responding as well as she used to. She also doesn't turn towards sounds/voices etc. I am wondering if she may have glue ear. I will ask about that tomorrow too.
Yesterday we had a combined housechurch celebration meeting out near one of Brissy's lakes. It was a lovely day, and so beautiful. A friend of ours came with a Shout Shout Elmo for Samara that she had found at a garage sale. I tell you, that made her day! You should have seen the grin on her face LOL.
Afterwards we went and had a look at a 6 bedroom house that is for rent. The owners are homeschoolers with 8 kids, so they know what it's like trying to find a house for a large family. We will probably take it, and it should be available in about 6-8 weeks time. So that's pretty exciting after being in 2.5 bedrooms for so long:)
Anyway, gotta go. Bubby wants a feed. Will try and get back sooner next time.
Saturday, July 18, 2009
Since then, we have some totally radical changes. We can now go swimming at the beach at this time of year. It does get a bit cold, but more like an averaged summer day in NZ. We have lived in several different places. 8 months were in a caravan on friends' properties - 4 months in Childers, and 4 months in Glenwood. Michael was unemployed most of this time, and we were living off the sale of our house and the Family Tax Benefit.
Then Michael got a job on the Sunshine Coast. He commuted for a while, until we found a house to rent in Mapleton at the top of what the Australians call a mountain, overlooking Nambour. At Easter we found out we were expecting another baby. The rest of that story is already on here, so I won't go there, suffice to say it brought some radical changes!
After a few months at Ronald MacDonald House, we moved to Margate on the Redcliffe Penninsula, into a 2.5 bedroom house. It feels pretty crowded, and for that reason, we are hoping to move soon. We are looking at a 6 bedroom house for rent in Kallangur, which would feel great after being cramped so long! Although I would miss being right near the coast.
So, now, here we are, thousands of miles from 'home'. There are good things, and there are bad things. I miss my family. My sister is pregnant, and I don't know when I'll get to see her baby. I miss my friends, although we have made some great ones here. I get frustrated with all the things we don't get help with because we aren't Permanent Residency holders, and stressed about the whole application process that we are about to go through to get it.
We have a disabled child - something I was always willing to go through was adopting a Down Syndrome baby, but never, for the life of me, was I prepared for going through the shock of giving birth to one! She has had a fairly sickly winter - and for that I am so grateful we live in a sub-tropical climate.
I totally don't miss NZ winters. I am finding it cold enough here!!
But so often, I still question whether we did the right thing. Before we left, God told me not to be like Lot's wife. In other words - don't look back. So I am trying to focus on the fact that we are here. We are supposed to be here. Sure, we have had some setbacks. But there have been a lot of positives too. Besides, if this is where God wants us, then setbacks mean nothing. If we had our Permanent Residency Visas, a lot of the negatives would go away. I guess Queensland will always be the Paper State, but I can live with that. The people here are great. I love the place. It is so beautiful. So why do I keep turning back?
Thursday, July 9, 2009
Monday, June 22, 2009
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
Sunday, June 14, 2009
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....
Wednesday, June 10, 2009
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
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
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!
Sunday, May 31, 2009
The following week, Jason (K's hubby) had to go to Sydney for the week. Kerreigh doesn't like being home on the farm without him there, so the girls and her came and stayed at our place. Now, if we thought we were crowded in her big farm house, you can imagine what it was like in our shoebox! Sara came and slept inside for the week, and gave up her caravan for them. Somehow we got through it all, and even got more pictures of our beautiful babies! I especially like the matching princess dresses I found for them at Trade Secret, down from $70 to $5!
Because Kerreigh lives so far out of town, she doesn't get to do a lot of shopping in the big smoke. So it was a week that was pretty hard on the pocket book! But it was great to get out and about after being cooped up so long with my leg. By this time I was in a moon-boot, and could put minimal weight on my leg. I could also drive, which was a good thing, considering Kerreigh doesn't have a licence! We spent an inordinate amount of time at Trade Secret, Pumpkin Patch and Toys R Us! We also did a lot of op-shopping which was great, and we got quite a few bargains.
That week, we also started Samara on solids. Well, thick liquidy stuff that used to be solid, anyway! She started off with pear, and went at it like a pro! Here is a shot of the 2 babies feasting up a storm.
The only thing is, I can't honestly say this pear was her first solids! On the plane on the way back from New Zealand, Samara was sitting on Renata's lap. Renata, at the time, was eating a semi-melted bar of chocolate. You can see where this is going, can't you? Yep, sure enough, Samara leaned over and took a decent size chomp!! But how can you put in her record books that her first solid food was chocolate at 3.5 months corrected??!! So, for the record's sake, we are sticking with her first solid meal was pear at 5.5 months corrected.
Things went along nicely, until 4 days later when we tried her on apple. Within minutes, her face, head, torso and legs were covered in a nasty rash, and she screamed for the rest of the day. I wasn't sure whether it was an allergic reaction, causing a rash, which left her screaming, or whether she was just screaming about something unrelated, and the screaming caused like a heat rash. So we went back to pear for the next few days and then tried apple again. Same reaction. We figured we weren't going down that road again! WRONG! The next food we tried her on was banana custard. She had the same reaction. I read the ingredients label - who woulda thought? It contained apple! Then we checked out everything else we had. Even half the vegie mixes on the market contain apple!
For now, we are waiting to see a dietician, so for safety's sake (especially since apple is supposed to be low-allergy), we are sticking with pear, and baby rice. She still seems to react to other things though. She had a reaction to something today. Don't know what it was, although she did try putting Bryanna's popcorn in her mouth. Bryanna took it straight back out of her mouth, but now I wonder if corn is a problem too. She also seemed to react to a shirt Michael was wearing the other day. It must have been the powder it was washed in or something (it was a shirt he hasn't worn in months). Every time he held her, the rash came up, then would go down again after an hour or so of him not touching her. So he changed shirts, and the problem went away. I am quite worried about just how much she is allergic to.
Anyway, I'm getting a bit ahead of myself here! Over the next few weeks, leading up to now, we had 2 birthdays. Mahalia turned 10, and Renata turned 16. Mahalia had a combined birthday with the next door neighbour who turned 4. We went down to Suttons Beach. It was a beautiful day - something that didn't happen often on birthdays in NZ! Here she is cutting the Camp Rock birthday cake Renata made for her. Unfortunately I didn't get much in the way of decent pictures, as I was still pretty incapacitated with my broken ankle! I could limp around with crutches but that was about it.
We haven't celebrated Renata's birthday yet. 2 of her friends are down on the Gold Coast at the moment (Lauren from Childers, and Melody from New Zealand). So tomorrow we are heading down there to go to Seaworld with them. Then we are going to an all you can eat restaurant in Brisbane with them for dinner. Melody is staying the night tomorrow night, before flying out to England on Tuesday morning.
Just after Mahalia's birthday, Bryanna was washing dishes one Wednesday night. Michael and Sara had just left for SES (State Emergency Services - they are volunteers, and have meetings on Wed nights), and I was online on the laptop in my room. When Bryanna started absolutely screaming blue murder. To tell the truth, when Bryanna screams, my first thought is spider, or some other creepy crawly. And, this is Australia. There is ample opportunities for screaming here! Well, the screaming seemed to go on and on, and get louder and louder. In fact, it was louder than usual. And if you know Bryanna at all, that's pretty darn loud!!! So I went to investigate. (now, this sounds like it took ages, but it was probably all in the time it's taken for you to read this paragraph this far!) Anyway, Renata had been cooking some potatoes, but had too much water in the pot. Now, bear in mind that Renata has Aspergers Syndrome, and can only really follow one track of thought at a time. So, to her, the logical thing to do, was to tip some of the near boiling water down the sink. Well, Bryanna was using the sink, remember. Anyway, the end result was poor Bryanna ended up with second degree burns all over her hand! Michael raced home from SES and took her up to Redcliffe Hospital. They wanted her to go up to the Children's Hospital int he city (not sure if that's cos they have a burns unit, or because they couldn't handle the screaming!). Well, they had to send her by ambulance as she had been given morphine. So, Bryanna, being Bryanna, proceeded to tell them that the only other time she had been in an ambulance was when she was faking! Well, you should have seen the look of horror on the nurses face! Unfortunately, that nurse was called away, and never heard the whole story (which we made sure the ambos heard!). The story was that, when she was in St John Ambulance Cadets in New Zealand, they were having first aid competitions. She was being an asthma patient and had to act sick! The competitors then had to get her ready and into an ambulance! LOL. Well, the burns looked pretty nasty, but thankfully after a couple of weeks, they started to heal up really well. Now there is a small bit of scarring, and between her fingers looks a bit red, but apart from that, she is all good.
Over the last couple of weeks, as I mentioned the other day, I have started getting into digital scrapbooking. Next time I am on here, I will post some of my pages. For now, I need to sleep so I can make the trip down to the Gold Coast tomorrow. I am a bit concerned about walking around all day though. I still have the crutches, but that's a bit awkward, and I do get sore if I am upright too long.
Despite the seasons changing from Summer to Autumn while we were away, it was still pretty hot when we got home. Not much fun when you're in plaster for 6 weeks. I divised all sorts of ways of itching it. Don't know that the hospital would be impressed, but at least I got a bit of relief. Living in Australia, my biggest fear was getting fire ants in the cast! We have them living outside our house, and I worried about it every time I went out the door! Thankfully THAT never happened.
The one outing I did have was to the Picnic on World Down Syndrome Day. I didn't get around much once we were there, but it was good to get out, and also to meet some other parents, adults children & babies with DS, and siblings. It was a beautiful day - not too hot though! The girls all got their faces painted. Even Samara!
Wednesday, May 27, 2009
Anyway, 4 hours later, we arrived into a cold South-westerly (yes, that's the COLD wind in our part of the world!), rain and 16 degrees C. Samara burst into tears as soon as we walked out of the airport! She had never been cold before LOL.
Michael's brother had arranged a van for us to hire, and met us at Christchurch airport. We headed straight for Timaru, via the Golden Arches (which is definately more expensive in NZ than Australia). Personally, I was only interested in finding a decent ice-cream shop! Australia's icecream is nowhere near as good, is more expensive, and is not as readily available, or in as many flavours!
It was really nice to see our family and friends again. But it was pretty hard to see what once was our house, levelled to the ground:( Quite a few businesses had closed down. The first time I really saw any evidence of the financial crisis. We didn't actually get out much while we were there. Samara was sick for a week of our trip, and with the cold weather, I wasn't too keen on taking her out.
The weekend after we got there, we went down to Central Otago to help our oldest daughter, Alicia, move from Omarama to Christchurch for Uni. It was nice to see her, but it wasn't for nearly long enough! I wish we had the time (well, I wish SHE had the time) to just hang out, but I guess part of growing up is getting your own life. And besides, it was the week uni started!
The second weekend we were there, we had Samara dedicated at our old church. Mum had made her one of the gorgeous gowns she is famous for. Here is a couple of pictures: OK, maybe not. I've forgotten my Photobucket login, and we don't have the same email address any more!! Um, I'll have to try later, I've been sent away in disgrace!
Monday, May 25, 2009
Monday, May 18, 2009
Saturday, May 16, 2009
Isn't she just adorable? I love how tiny she looks here! This was taken the same day as the other one in the teddy outfit. I kinda miss her being this tiny. I love how she is now too, of course, but there was something just so huggable, and kissable, and warm fuzzy inducing about holding such a tiny little baby!
I can't remember whether I noticed it before or after her diagnosis, but for a while I had noticed her oxygen saturation levels (sats) were dropping (desatting) significantly with every feed. This was when she was still being totally tube-fed. I mentioned it to the drs, who said they would keep an eye on it - but, truth to tell, they didn't. A couple of days after talking to them, she reached the age where they change them from a sats monitor to an apnoea monitor. I was pretty mad really. They said, but she's 35 weeks now - she doesn't need it. They were basing their decision totally on her gestational age, not her condition! I was pretty upset about that. Anyway, this was about the time that I started trying to breastfeed her. I wish I started blogging back then - maybe I'd be able to remember what happened and when, but I am being as accurate as I can. Well, around this time, I noticed that she was really struggling to breathe when I was feeding her. She would get a marked tracheal tug (where her throat was getting a deep hollow) as she tried to breathe for several 'breaths', and then she would gasp, breathe ok for a few seconds, then the cycle would repeat. I tried to tell the staff about this, but they weren't too worried. They said it was all just part of being prem. Thankfully a couple of days into this, the lactation consultant was sitting with me during a feed, and was quite concerned about it. WHY can't dr's learn to listen to mothers???? Anyway, at least this meant some action. We had her put back on the sats monitor for her feeds, and this confirmed that she was desatting to around 45-60% during feeds.
The next day, the ENT specialists came to see her. They said they could see some webbing in her throat. They arranged for her to have investigative surgery a couple of days later. They told us that she may need a tracheotomy. Well, that had me in tears! Mum's friend and her husband (who has a trach due to throat cancer) came to visit and prayed for her. Well, the great news was that when she went into surgery, there was NO SIGN of any webbing!! However, they said she did have mild laryngomalacia (which is basically floppy airways). Apart from that, everything looked fine.Here she is in the 'limosine' ready to go over to the Children's Hospital for her op.
We did have a big scare after the op though. She was in the Intensive Care Nursery (amazing how huge she looked in there after her few weeks growing in Special Care!) after the operation, laying on her tummy. When it came time for a nappy (diaper) change, we turned her over, and her oxygen sats dropped to the 20's! She turned blue, and the nurses came running. They gave her oxygen, but it took a while to come back up. You know that it's time to panic when all the nurses start to panic! And believe me, I did. We discovered that it was simply easier for her to breathe when laying face down (and when she gets a cold, we still put her face down). So she spent the rest of the day wearing her nappies backwards!!
These pictures were taken in NICU after the operation. I love the closeup of her face. It is the first time we saw her without the tube!
A few days after the surgery, Samara had a barium swallow. This is where she was feed formula with barium in it, which was x-rayed as she drank it. This showed that she was aspirating (breathing in) her milk. So this was the major cause of her desats. As a result of this, we went to a combination of thickened expressed breast milk (EBM) and tube feeds. We also fed her with a special needs Habermann bottle, which allowed us to control the flow. Another thing that had shown in the swallow study was that she would take about 30 sucks in a row without pausing. Normal is about 6!
By this stage, the whole Down Syndrome thing had just become a part of our lives. I was over the major sob-sessions (although minor ones still crop up from time to time!) I had decided to become pro-active, and search the net for anything we could do to help her. This is how we found the TNI and Changing Minds protocols I mentioned the other day. They weren't going to be 'miracle cures', but it looked like they would help Samara to have a better life. And, I think so far, that they have helped. She is not as sick as we were warned about, and she is pretty clever too, if I might say so myself LOL.
She had her postnatal hearing test at 36 weeks gestation. This is given to all Australian babies. They didn't have it when my others were little, so it was pretty fascinating. They use a probe taped to the forehead to measure brain activity, as they play sounds through little headphones. I called it her first i-pod. Take a look....Isn't that just so cute?
By this stage, she had reached the magic 1800gm too, so she was moved from the incubator to a cot. This also meant she was able to graduate from sponge baths to the real thing!