The Tovington Post

Both kids in the house are 8 years old for the next few days.
Nissim got lots of Lego and a bunch of stuff from Lush

It's been ages between posts. I've thought about posting lots of times. But just can't find the time. I don't even have time now. Here is a little outline of what's been happening:

Tova and I have been going to Adelaide for the day each month so she can do 4 hours of CE Therapy.
No one has been especially sick nor been to hospital for Croup
Nissim and I went to Tassi for about 3 days a week or so ago. It was my first time in about 7 years to spend a night away from Tova. It was strage and I had nightmares on the first night; I'd lost her, left her, forgotten her, abandoned her and everything in between. In my waking moments, I was 100% fine.

Happy Birthday Nizzo

I just met you, and actually we have shared about 4 minutes of time together. You mention something about your children. I say I've got kids too. You mention the school your kids attend. I mention mine. I get a curious look about both the schools my kids attend, so I explain that one attends a tiny private school in the South East and the other attends a special needs school in the other direction. Immediately you tell me how amazing I am. I am offended even faster.

I get it, I want to change it!

According to the way our society conditions us, special needs / disabilities are bad.

What I hear when you tell me how amazing I am as a parent without knowing anything at all about me (I mean seriously, I could be the worst parent in the world, being a parent of a special needs child doesn’t qualify me to be a fantastic parent at all), I hear that you think my child couldn’t be loved. Or that YOU couldn’t love a child with any additional needs. HOLD ON! Have a think about what you just said. Why would you say this to me? You think my child is horrible and I’m incredible for loving her? It’s just a STUPID, such a stupid thing to say.

There are more things similar about us than there are different.

You love your children, I love mine

You love your children no matter what, I love my children no matter what. Both my kids are different to each other, both have different likes, wants, talents and personalities, I bet yours do too. See, we are the same.

We probably have some different challenges, but that’s ok. Everyone has something going on in their lives, we can’t change that. Would I tell Cerebral Palsy to fu*k off if I could, YES, I bloody would. But it wouldn’t change my parenting skills, it wouldn’t change my love for my children. It would just mean she didn't have CP.

Stop telling me I’m a fantastic parent because I have a child with special needs. It’s stupid and confusing. Not to mention RUDE.
You don’t know anything about my parenting skills. What if I am in actual fact a terrible mother? You can’t know anything about me in 4 minutes of conversation about the schools my kids go to. You are offending me.

I don’t need your approval. I don’t need you to tell me anything about my parenting skills, I’m not telling you anything about yours, how could I, we just met. I don’t know what you do behind closed doors, what if you beat your children or are abusive in other ways? How could I possibly know that about you in 4 minutes of conversation, how could you know anything about me?

I adore my kids, both of them. They fulfil me, don’t yours do that? Isn’t that just how it is for parents? how is that any different to you?

Please think before you speak. Special needs parents are JUST PARENTS

I spend most of my time being happy. Don't you?

I don't spend my entire day feeling down and unfortunate that I got some bad deal or something. OMFG. I feel fantastic. I really, really, really love my wonderful family. Don't you love yours the same?

My child with special needs is just as loveable as yours without and it's so completely disgraceful that you'd think otherwise.

Next time you meet a parent of a child with special needs, behave the same as you would meeting any parent of any child.

I know you aren't trying to offend me, but you do!

It's interesting. A few years ago, this happened to me too, an acquaintance said to me how wonderful a parent I am, and I kept wondering what they'd heard about me from other mutual friends, it was confusing, but I thought she must have some knowledge about me that was positive. It did make me feel uneasy though.
It took me months and months to figure it out. She was only saying that I was a great parent to me because she feels that she couldn't love a child with any additional needs, so I must be a hero. YEP, that’s me.. a hero for loving my child.. makes sense.

Last week, over 10 days ago, Nissim started complaining about how his legs were hurting. As he had been doing swimming with school every day that week, I just put it down to muscle aches. By the third day of swimming I was a bit more 'worried'.
He’d asked me to come to each day of swimming, so I did, so I was there when on the 3rd or 4th day he asked me if he could get out of the pool early. "of course" I said.

I took him to the showers to heat him up, he was shivering. They all shiver in there while all us spectators melt by the side of the pool. He heated up a little, got back into his uniform and asked to come home. He seemed sort of ok so I told him to go back to school on the bus and have something to eat, if he was still not feeling quite right, he should call me and me or my mum would come get him.
He didn't call. So he must have braved it out all day. Poor little guy.

The next day he was really not feeling well so he stayed home. I think by Friday/Saturday he was fevery and really tired. He stayed home, slept HEAPS and watched movies. But mostly he slept.
He started coughing.
He would spend the next week, yep entire week going from fever to fine while maintaining a magnificent cough.

Somewhere in these days Tova also started breathing funny. She stayed home from school on Monday so I could watch her. She seemed fine after Pred. Really fine. Tuesday, not so fine.
I took them to the salt rooms. They loved it. They were so peaceful in there. It was great. No idea if it helps. But it's something. There was one interesting thing that happened. After the first session of Salt rooms, that night Tova slept with really quiet breathing, and woke with terrible breathing. Usually she'll sleep with bad breathing. So perhaps the salt rooms helped her have a good night sleep?
The set up there is stunning & the staff are beautiful. The place has amazing positive energy.

Both kids were pretty bad a day later so I took them back to the salt rooms. And both to the Chiro. It was the first time Nissim had been to Dr Craig for himself. He really liked it.

That night Nissim had a fever again after having quite a good day. I was scared. I booked an appointment with the GP for the next morning (We'd already taken him 3 times that week, this was number 4).

The next day, Tova got the fever incredibly bad.

The GP was fantastic. She told me that I didn't need to be so worried. She was so confident and reassuring I almost cried.

Tova was completely floppy and a dead weight when we picked her up. She didn't move off the couch, she was so sick.

After a pretty scary night, because I didn't know what to expect and I've never seen invincible Nissim get so sick before, everyone woke up fair. Tova had a bath and slept for most of the day. Nissim relaxed and played lego.

I've had a pretty hard week +.
Both kids are still a bit off, but are on the mend. Nissim still has the really stupid cough. But, really, really stupid. It's so intense. He hasn't had a full night's sleep for over a week.

Well, yesterday Tova woke up much better, still not great. But she was so very upset with me that I don't have any tickets for her to go see a performance where the orchestra is playing in the pits. "I want to go to the city to see the theatre and watch the orchestra in the pits! TODAY! It will make me very happy", is what she signed.
She was serious. She put her hands in her head was on her knees on the kitchen floor and placed here head down to the floor on her hands in absolute disbelief that we weren't going to the city. She's amazing.

A few weeks ago Tova and I went to the Opera, I think I mentioned it, did I? If not.. here is a recap!
I've never thought about going to the opera, I thought I'd hate it. So when Tova had a subscription, I got everyone else to take her. There was one ticket left. So I took her a few weeks ago. I LOVED IT! I mean, I loved it so much that I got online that evening to buy more tickets only to find out the have completed their Melbourne season. I considered moving to Sydney! haha.

Tova spend the entire time watching the orchestra in the pits as we had front row seats. They were great to her. Talking to her and waving. I'm not sure if she watched the opera, and to be honest, I possibly sat watching Tova the entire time. She was delighted for the entire show. She was also very sad when it ended. The people sitting next to and around us were lovely too.

After this 'tantrum' I decided to buy tickets to see the orchestra for that evening (last night). So I dropped Nissim off at mums, gave Tova panadol and drove to the city for the 6.30pm show. We got front row seats.. Tova was delighted and it was worth it. This child LOVES music. Mostly violins. There were heaps of violins. Again the orchestra people spoke to us before everyone else entered the theatre.

Tova sees Dr Craig at least once a month. And when she's sick she has an extra visit. It always helps.
They are pretty funny to watch:
He's a Doctor, educated, the owner of the business, big and strong.
She is... well, tiny, 8 years old, low muscle tone and BOSSY.
She tells Dr. Craig what to do, and mostly he does what he's told. They have a good relationship. If he does what he is told, she allows him to do what he needs to do to help her get well and balanced.

Tova is over her lung infection now. Thank goodness. Back to the cute little happy girl she is between stupid sicknessess.

During the small hours of Saturday morning Tova woke us with crazy breathing. We gave her Pred and Panadol. We waited, and waited and waited some more.
The pred was taking longer than usual to kick in, but at about 32 minutes past giving her the drug, she started to breath a bit better. Thank goodness.

She thinks it’s hilarious to make her breathing sound worse than it is too, by laughing and making noises and breathing faster than she should.

Eventually she went to sleep, so did we

We watched her all Saturday, she was fair.

Saturday night/Sunday early morning she got a crazy hot fever that even Panadol wasn’t able to defeat.
Eventually she calmed down after lots of crying and twisting and turning, tossing and general unhappiness. I took her to the GP on Sunday and he said that she had a Lung Infection

He asked if I wanted to take her to Hospital, which of course I said a big “NO THANKS” to. He was more than happy to let me go home with a chemist worth of prescription drugs to boot.
I didn’t get all the medicine prescribed, but I did get the Antibiotics and an extra bottle of Nurofen (orange flavour as Tova keeps requesting Orange Juice).

Sunday was all about reducing that horrible fever. Poor Tova. She was so hot. She watched lots of Andre Rieu from her couch bed in the lounge room. Andre helped. Tova is quite possibly his biggest fan, even kissing him on the TV screen. CUTE
Sunday night I slept in Tova's bed, when I say 'sleep', I don't actually mean sleep.. More like.. being in the same bed as a febrile Octopus.

Tova had laboured breathing, which made her toss & turn all night. She woke at about 3am very upset and very hot. More neurofen administered.

turned. She woke at about 3am very upset and very hot. More neurofen administered.
I gave her some more antibiotices too (yep at 3am ish). They are to be taken on an empty stomach, which is really hard to do with Tova, as she loves to eat, this fever didn't even stop her from eating.
She demanded that I come back to sleep with her in her bed. I did as I was told. It took us a while, but eventually we slept.
I was groggy at 6.30ish, but had to get up to get Nissim ready for school. My mum came and picked him up at 8am. Once they left I went back to Tova's bed and lay down, for a moment, just to listen to her breathing for a while....
I woke at 10am!
Tova woke after 12pm!
NO FEVER!

She is still a sickie. She stayed home from school today, obviously as there wasn't much of the day left after she woke at lunch time.
I took her to see Dr. Craig.
Tova spent lots of time reading books in bed today, which was adorable.
Her breathing isn't great, but she is getting better.
It's been scary.