Inspirational.

Being a mother to a child who is classified as disabled, I find the Paralympics inspirational. I know myself that Jaxon is not disabled. That being said, he has access to services within our community that are there for children with disabilities. Compared to some of the children he attends "classes" with, you can hardly see why Jaxon would be going there. He can walk and talk like any other child, nothing is holding him back. He merely has hurdle's that other children don't have.

I am incredibly proud of Jaxon and everything that he achieves on a daily basis. Be it holding something with his "bung" arm, picking up a texta and scribbling on the page with his right hand, or grasping something between his thumb and index finger in his right hand (something he can not do right now, but I know he will) Jaxon overcome's things on a daily basis that other children don't even have to think about. It come's naturally to them, while Jaxon really has to think about it, and be shown how to do it.

So it disappoints me to know that even though people say they don't discriminate against those of us with disabilities, it still happens. I am speaking of course, of the Paralympics, which if you don't know, are on right now. (comment please, if you didn't know they were on)

I say this because of some very major differences in how both the Olympics and ParaOlympics get treated.

The Olympics got 24 hour, 7 day a week coverage from start to finish, and a little beyond. It was played on channel 7, a prime network here in Australia. Compared to the ParaOlympics, which has been delegated to ABC2. If you don't know, ABC, ABC1 and ABC2 are channel's that people just don't watch. They play the Indonesian, Turkish, Greek, Italian, Spanish news, Sesame Street and The Tellytubbies...it's a Weather channel, or as boring as one at any rate. It's one of those channel's that you find when nothing is on the other three channel's. When you're bored or just about to go to bed. It's also only available to those fortunate enough to have a digital set top box. Otherwise, those channel's don't exist.

Not only are the Paralympics played on a channel that doesn't exist to a large majority of Australian's, but it's hosted by absolute nobody's. While our "regular" Olympians had high profile commentator's and TV personalities presenting their events and award ceremonies, the Paralympian's get Joe Blow from some far away land that none of us know about. And while the Olympics and the medal's won were top rated, and considered to be "must know" news (played in the first five minutes) with updates throughout the day, I've not seen more than one (if any, I just don't want to exaggerate and be bullied by my fellow Australian's who HAVE seen it mentioned on the news..IN that first five minutes BTW, not at the end) mention of the medal's and world records broken and won by our Paralympian.

While the Olympics were on we were bombarded with advertisements by every day Australian's, proclaiming their love for Australia and our elite athletes. "We're Proud" "Behind you all the way" "You can do it" and so on. None of that has been done for our other elite athletes. As far as the media is concerned they just don't exist. It's not happening, and it's not worthy of any of the privileges that our "normal" athletes get.

The young boy that I saw win his gold, had mild cerebral palsy. You could barely tell. And from first glances you can barely tell that Jaxon has a few issues of his own. It got me thinking that that boy is an every day normal person, with proud parent's just like me. Parent's that watched him grow and succeed just like I am watching Jaxon grow and succeed. Yet because that boy has a disability his parent's don't get to see him run, unless they have a special TV. They don't get to see his achievements on the news, or mentioned on the radio. He probably wont even get to meet Rove to celebrate his gold. None of his achievements will be celebrated by his fellow Australian's. That's sad. Because he is an Australian, and he deserves the same treatment as any other person living here and acting on behalf of his countrymen and woman.

This offends me. Because as I watched him win his gold and break world records I couldn't help but think that one day THAT could be Jaxon. That could be my son, the one with the bung arm and funny spine. And as Jaxon's mother, I don't see that he is any different from you and I. Neither are the Paralympian, yet they clearly don't get the credit and celebrity that everyone else here get's for doing a good job and succeeding in their field of choice.

While two weeks ago all over Australia we all held our breaths and cheered on our runner's and swimmer's, in a living room somewhere unknown to any of us today, there were two people. Parents. Sitting alone and holding their breath that their son reaches his full potential and acheieves what he set out to acheieve. They couldn't be more proud of him...but what of Australian's???

Not so small.

Since finding the internet I've always felt that the world, despite it's size, is becoming smaller and smaller every day. With the invention of the telephone and internet, I get to meet people that I otherwise would never get to meet. I get to learn about cultures that I otherwise wouldn't get to experience in person. I've always felt that this is a good thing, until now.

A week or two ago I wrote a post about my internet love affair with hundred's of woman from all over the world. It's a relationship that you just can't understand if you've not experienced it yourself. You just can't know how personal life becomes when people can literally get in to your head. And you can't know how good it feel's to never feel alone.

A smaller group of girl's and I have been in constant contact for more than two years now. It started off as one or two email's a day and quickly exploded to two, sometimes three hundred email's A DAY. I know them inside and out, and they know the in's and out's of every aspect of my life. We send parcel's for birthday's, we send text's, we share photo's that no one would ever really want to see. We call and we love each other as if we have known each other all of our lives.

It is this particular relationship that has just become incredibly hard to bare. My dear friend Jeannette's mother just died and I can't do anything to help her. While I marveled at being able to contact her via email every single day, and text her on day's she was away, I now sit and cry because I can't hold her hand. While it was easy enough to share a blow by blow textual account of Jaxon's birth and first few days of life via mobile phone's it's a completely different story when it come's to death.

I feel helpless. All I want to do is be there for her. All I want to do is hug her and tell her I am there. Sending flower's just isn't enough, I need to be with her and comfort her like normal friends would do in the same situation. But I can't, and it's breaking my heart to know that while I sit here at my computer crying for her, Jeannette is in pain.

For the first time in a long time, I can see that the world really isn't that small. Ocean's separate me from doing what I want so desperately to do. She might as well live on Mars for the amount of good I can do her from here.

It just sucks.

The world is too big.

Jeannette,
with Samantha (niece on left) her son James and Jenna (niece on right)

If you'd like to, you can read another account of this feeling here

Mummy Moments

Jaxon has a babysitter right now so I’m going to take this opportunity to get a little deep and meaningful here.

Ten years ago a cousin of mine met and fell in love with someone on the Internet. She’d never met him, since he lived in Texas. When I found out about the relationship, she had already been to America to meet him and brought him back to live with her and get married. They’ve been together ever since and have four very beautiful children.

At the time I had very little knowledge of the Internet. I thought it was CRAZY. To fall in love with someone you’d never met. To fall in love with and trust someone and not really know that what they said they were, was actually the truth.

I’ve had some time to think about it. Now that I am thoroughly in to this Internet thing, I totally get it. I could easily fall in love with someone over the Internet. This is not to say that I am looking and lurking through dating websites…going behind Tim’s back looking for love. That is not what I am talking about. I am simply saying that I can see now how it could happen, and I understand.

I know this now because the majority of my best friends are Internet friends. When Jaxon was four months old and started crying for no known reason I felt very alone. While at mother’s group the other girls seemed to be getting along OK, complaining about the occasional cry, I was drowning. I was constantly searching their faces for a speck of truth that they were drowning right along with me. But I never found it. And because they all looked to be getting along just fine with this baby thing, I didn’t have the ball’s to stand up, put my hand in the air and say “I’m a new mother, and I need help”

Here in Internet land was a completely different story. Not because the mother’s with new born babies Jaxon’s age were going through exactly what I was going through, because they weren’t. But because here in Internet land it’s very easy to open up and be honest. If I needed to cry I did it, right here in the safety of my own home.

“My girls” as I affectionately call them, listened to me and heard me cry. They opened up and shared as much of their experience as they could to try and help me through.

I couldn’t find the words I needed to say face to face to the friends visiting. I didn’t want to cry and break down and seem weak in front of them either. I suffered in silence. They knew what was going on, because when they came Jaxon was crying. While they visited Jaxon was crying, and when they left, Jaxon was still crying.

Three weeks later Jaxon and I ended up in hospital. While my Internet friends were not so surprised to hear it happened, my close friends didn’t see it coming. Because I just didn’t want to admit to them that something was wrong. Most of them knew the crying was going on, but didn’t understand that it was all day and all night with barely any breaks in between.

One day in hospital Tim came to me with a package, which he called “Boo’s Fan Mail” It was letters and cards from all over the world. My girls were reaching out to me when I didn’t even have the Internet. While I didn’t get a single call from friends of mine, I received calls from South Africa and America, from my girls, offering support.

We share everything. The things we have opened up about are unbelievable. From the color and consistency of poo that comes out of our babies bum’s, to the best sexual position you’ve ever tried and your favorite family recipes. Right down to the way we all wipe our asses. I scrunch in public and fold at home, since I hear you all begging to know!

It’s all out there. It’s all honest and it’s all read and heard without judgment or scorn, mostly. We’ve been through thick and thin together. Through the ups and downs of pregnancy, the ups and downs of birth and the new born months. We’ve shared marriages and divorces, school graduations and birthdays. Sadly, we’ve lived together through the deaths of two of our babies, and most recently two family deaths.

I love my girls just as much as the people I see here in my home town. I trust them as much as I trust the people I know here in my home town. I couldn’t live without them and they are as “real” to me as the people that I have over for dinner and meet with down the street.

It is these girls, sharing their lives with me, that make me understand how people can fall in love with people they have never met. Through the good and the bad they have held my hand and given me a shoulder to cry on. One day I hope we meet over coffee.

So I guess you could say that I am in love. With 100 or so woman from all over the world. I TOTALLY get it.

Mummy Moment's

It's well known among my friends and family that I'm not a very secure mother. I have confidence issues when it comes to babies because Jaxon is my first. Not only my first born, but the first baby I ever held. The first baby I changed a nappy on. The first baby I ever had to comfort. The first ever. I know that I am not the only woman ever to have had a baby and have it be the first baby experience she has ever had. But I can't speak for them, I can only tell you about my experiences.

So firstly, with Jaxon's many little issues, and facing doctor's and nurses and paediatricians on a weekly basis, I found that very hard. I felt like they were sitting there and pointing their finger's at me and secretly, deep down inside they were thinking "What a terrible mother" In my mind, they weren't giving me advice, they were lecturing me. I felt small and insignificant.

There have been huge lesson's along the way. Lesson's that were really hard to live through, but that taught me a lot when I came out the other side alive.

The one I really want to tell you about is the day Jaxon had his allergic reaction to his four month shots. The day started off pretty normal. He'd had his shot's at 5.30 the night before. I woke him up for his 6am bottle. Jaxon never ever throws up so I knew something was not right when he threw up this time. He didn't go back to sleep like he normally did either so that was my second clue. At 9am he'd been crying and had a temperature for 3 hours. I tried once again to give him another bottle, thinking it might settle him down. But he threw that up as well. The health nurse told me to go to hospital so I did. I expected nothing more than them to tell me he had a cold and give him panadol.



That's not what happened. The doctor's all gushed around him. Two doctors and three student doctors. He had a temperature and he was swollen from head to toe. His fontanel was bulging out and you could see the bump through his hair. He didn't stop crying while they took his blood, he didn't stop crying when I tried to give him a bottle. He just wouldn't stop crying. And he was HOT. The doctor's said the words that no mother wants to hear.

Meningitis. They thought he had meningitis but the only way to find out for sure was to do a lumbar puncture and see what colour the fluid was when it came out. On my 4 month old baby. My local hospital is not a small hospital but it is by no means a large one either. Because of Jaxon's scoliosis and his arm and leg and all those other issues, and because he was so small, they didn't want risk doing anything near his spine. So that was it, we had to travel an hour to another hospital.

I called Tim home from work. While we waited, biting our nails, they tried to get a drip in to Jaxon's arm. Because the ambulance wouldn't take him without a drip to administer fluids or any drugs he needed quickly. His arms were so small that they couldn't find a vein. So they had to drill a hole in his shin bone and insert a drip line through there.

Once we arrived at the larger hospital, after an awful ride in an ambulance, they made us wait in an emergency room. Mum came in and the first thing she noticed was how swollen Jaxon was. They did an ultrasound on his head and found that he had fluid around his brain. So they had to do a lumbar puncture. We didn't stay around for that but when we returned Jaxon was calm and tightly packed in to lot's of blanket's so he couldn't move. The fluid that came out, was clear. No meningitis.



We got moved to the paediatric ward. And this is where the trouble started. It wasn't the doctor's, it was the nurses. I had already spent 4 weeks out of home the month before. Jaxon also had a cast on his leg from his tenotomy on his leg for his club foot. I'd spent two weeks at Riverton, where we sorted out Jaxon's routine. Eat at this time, sleep at this time, bath at this time, play at this time...repeat. It was perfect for our family. Jaxon was happier. But these nurses wouldn't listen to me. The over-rode every thing I told them we'd been doing.

When it wasn't time for a bottle, they gave him a bottle. When he normally wouldn't be sleeping they wanted him to sleep. Jaxon wouldn't sleep with the light's on and is a really light sleeper. They put us across from the nurses station and wouldn't let us turn the light's off or even close the curtain's. So Jaxon wouldn't sleep. I would go to the toilet, leaving Jaxon asleep and peaceful in his cot and come back to find a nurse giving him a bottle. "He was screaming for a feed" they would tell me, when I had been gone all of two minute's and it took them 2 minutes to get a bottle.

But the shit really hit the fan that first night we stayed there. At about 11pm Jaxon was crying, when normally he would be asleep. And Jaxon only cries when something is wrong. Really wrong. I'd fed him a bottle half an hour before he started crying, so he wasn't hungry. I called the nurse in and asked if we could give him panadol. She said no, he's hungry, give him a bottle. I told her that he's just had a bottle and that I thought he was in pain. She said "Why would he be in pain? Well hello lady, he's had his shin drilled, he's had a lumbar puncture and just three days ago he had the muscle in his leg cut and cast. I think he's in pain. I told her that but she wouldn't listen to me. She kept telling me to give him a bottle.



I asked her, if I agreed to give him a bottle, and he didn't calm down, would she then give him panadol??? She said yes. So I gave him a bottle. Even though I knew he wasn't hungry and was in pain. But 1 hour later, Jaxon was still crying. And I was alone in my room trying to calm him down. After 4 weeks of continual crying, you can imagine how well I cope with that, it's not much I can tell you. But all the while, these two nurses stood not four feet from our room where Jaxon was obviously in pain and hadn't taken a breath in nearly 2 hours of crying, talking. Chatting like nothing was going on.

I didn't know what to do. And these nurse made me feel like I had NO IDEA what was going on with my own son. I knew he wasn't hungry, and I knew he's had a big day. I knew he was not going to settle down without help. And I was so stressed that I was not going to BE that help. But they stood and did nothing. I stood there, with cord's and drips and casts and cried right along with Jaxon. I looked out at them, hoping that they would see the desperation in my face and come and offer me some help. Take Jaxon and try to settle him themselves. But nothing. They stood and they chatted.





At 1.30 in the morning, now almost 3 hours after I originally asked the nurse for the panadol I'd had enough. I put Jaxon in his cot crying and walked out. I stormed out to be more accurate. I told the nurses "I'm going for a smoke, if you think he's not in pain then YOU (bleep bleep bleep) get him to sleep" and I walked out. I left my son in the hands of complete idiot's because I didn't know any other way to get them to help me. Help Jaxon.

I came back two hours later and Jaxon was STILL crying. They'd called in back up, an apparent "baby whisperer" who could work her magic and get any baby to calm down. But she walked up and down, as far as the drip would let her, and she could not settle him. She had two bottle's on the bench. He's not hungry she tells me. He wont eat she tell's me. I said, I know. He's in pain. And YOU said you'd give him pandadol five hours ago if I gave him a bottle, and then IGNORED his crying.

Finally, at nearly 4am in the morning, they gave Jaxon panadol. And guess what? He went to sleep.

That wasn't the only issue I had with those nurses during that hospital stay (5 days) but it was the most significant in my story. That was a moment. You know you have moment's in life when you look back and think...now THAT taught me THIS. Well that, when I KNEW that all Jaxon needed was some pain relief for him to get to sleep, was such a huge moment for me. It was the moment when I finally realised that I am Jaxon's mother. And I know best. It's when I learnt that no matter what anyone is telling me, I should listen to my gut instinct, and my heart. And do what I think is best. For MY son.




If those nurses had just listened to me and tried it out (and seriously, what is the harm?) that entire night would have gone a lot better. Jaxon would have been peacefully sleeping and so would I. That night, not matter how traumatic it was for me, will forever be in my mind as the day that changed the way I saw myself as a mother.