Have you come across blogs about children with cerebral palsy, that just doesn’t get updated as the child gets older or after a major operation or complication? I know you are nodding your head because that’s what happened here. I’ve always found it terribly frustrating because I wanted to know how the story ended – as if there is ever really an ending.

I now know what happens.

Life gets in the way of blogging and before you know it, you’ve been doing the same thing every single day for years and you forgot to tell anybody about it. Time passes without you realising it. You age but don’t really become any wiser. Just more tired. Your body starts to ache. You gain weight. You start to need that glass of wine each night. And the glass turns into a bottle without you even noticing.

Your career goals and dreams went flying out the window a long time ago but you no longer have the emotion to care. Your marriage is good, then bad, then indifferent, then good again. And then one day it’s just nothing. It just exists. You watch as your friend’s marriage breaks down and realise that there has been a lot of that going on while you weren’t paying attention. You have managed to stop paying attention to everything besides the daily grind.

And then one day you wake up and ask yourself – is this really all there is? Is this how my story goes?

This wasn’t what I had planned.

If you came to TP because of ABR – I can’t tell you whether or not to do it. It’s one of those things you have to try out yourself and see how it works for you. In the long run, it didn’t work for us, but I don’t regret trying.

If you came here because of the ITB – just do it. You, like me, have run out of options. It wasn’t as easy as I hoped. Yes, there have been complications. And yes, I would make the same decision again.

I first started this blog to explore my emotions following Moo’s diagnosis. It has helped me during some very dark times. But I am no longer able to write like I used to. After banging my head against the brick wall in disability world for the last 8 years, there is no emotion left and no subject that I haven’t written about at least once, or twice or ten times already.

Moo is now eight years old. I have loved him since the first moment I met him. I would do absolutely anything for him and have tried to do that at great personal cost to me.

At some point, I lost my identity and became Moo’s mum or hubby’s wife. I haven’t existed outside of my family for quite some time and they have become my defining feature. And I’m not saying that is necessarily wrong. It neither right nor wrong. It is what it is.

So this is where Terrible Palsy ends but not where my story finishes. Today I woke up and decided to turn left instead of right. You don’t always have to do the honorable thing. There isn’t always a black and white answer. Your story isn’t pre-determined.

Smell the roses. Enjoy laughter, love and light. Live every day as if its your last. That’s what I’m going to do.

My family is okay. I’m okay.

And as the universe doesn’t end in a bang, it ends in a whisper – this is TP’s whisper.

Much love to you all.

Jacqui x

Before I start rambling, it is my intention to write further about the ITB pump and answer some questions.  I’m not a Doctor (obviously) but there are things about it that I didn’t expect.  I’m just waiting to get further into the journey so I can write a more holistic piece.  There is one particular issue that we are still trying to get on top of.  I’m hoping that we can get on top of it.

Anyway back to the subject at hand, 13 days until my 39th birthday.  That means soon I’m entering my swan song year for my thirties.  Meaning, that I will be 40 before I know it.  Where is all the time going?

I know that I should be proud of all the things I’ve achieved during my life time.  But then I start of thinking of the things I didn’t achieve.  And about my future (which in Australia given the state of disability services is actually a very scary thought).  I always thought that I would get to 40 and start traveling as Ad would be an adult and self sufficient.  I didn’t really think of that when I had the younger kids.  I’ve achieved everything that I ever wanted with my career save for perhaps the money thing.

And I’m back to being stuck again.  So I’ve lost the extra kilos.  I’m fitter, healthier than ever.  So what do I do now?

Any suggestions on how to make the swan song truly memorable?

Moo took offence to me telling him he had to have a shower.

“No I’m not,” he shouted stubbornly.

“Yes, you are,” I replied.

“I don’t like you anymore,” he said.  “I’m going to run away.”

I told him that he still had to have a shower.

“No I don’t,” he said again.  “I am running away.  Now can you please open the front door for me.”

ITB site

The ITB (or baclofen pump) was first suggested to us when Moo was 3 years old.  We didn’t arrive at the decision for the pump surgery overnight and it certainly was a long process.

When ITB was first suggested, Moo had a lot more function than he does now.  The suggestion was met by hubby and I with an indignant and stubborn “over my dead body”.

When you see the pump, you can understand why the first reaction is disgust mixed with a lot of fear.

After hip surgery in 2009, it was again raised but we didn’t do anything more until after the plates were removed in 2010.  I spoke to our paed, who did the referral to the rehab paed, who in turn referred us to the ITB paed.  A long process and hubby and I both went to the appointment, looked at the pump and said “Absolutely not” again.

Earlier this year I had an appointment with the Orthopaedic Surgeon.  He isn’t known for his bedside manner.  But when it comes to surgeons, you want the talented surgeon with no bedside manner over the surgeon who is great to talk to but not so great in the operating theatre.

In his defence, we actually finally had a decent talk.  He put all the cards on the table and let me know what our options were for Moo’s future.  It was a sit down type of conversation because as it turned out, we were out of options.  They had all been exhausted.  Moo had less than 2 years before his contractures became fixed and permanent in his view.  And the only way we could turn is back to the ITB in order to get his tone and contractures under control.  And then we would have options again.

I am so proud of hubby as when I went home to tell him about the appointment, he didn’t stick his head in the sand or rule it out.  We went back for another appointment.  The ITB team made hubby sign the consent forms.  They wanted to make sure that he was on board.  They were worried that if things went wrong, that I would get the blame from him.

So we went for the test dose, which went amazing.  We confirmed our decision and got to the place where it was supposed to be “over our dead bodies”.  Only we weren’t dead yet.  Dying on the inside maybe.

The tough choice had been made.

Once you make those type of decisions, you just want to get it over and done with.  We were fortunate that it did happen very quickly.

Surgery was Tuesday morning.  By Tuesday afternoon, Moo was on the ward but not very happy.  In fact at one stage he was screaming at everyone to stop touching him and to leave him alone.  He was also begging me to get them to take the pump out.

I was really second guessing the decision.

Wednesday.  Pain was an issue so I made sure he was well medicated.  His bowels were impacted.  They had an IV going into his right hand (his good hand).  He had a NG, was vomiting back everything that went down.  And there was this huge thing in his tummy.  Moo stopped talking to me.  He only wanted his Daddy.  And although hubby didn’t say it, I was beginning to think that we had made a huge mistake.  The only thing saving us was that Moo’s legs were so relaxed and beautiful.

Thursday was not looking much better.  Still vomiting anything that went down his throat.  Unable to eat.  And the team made an incredibly brave decision to remove the NG to see whether that was causing more problems than it solved.

And it was.  He stopped vomiting.  Started eating and drinking.  And talking.  And wanted to play the playstation or more accurately for me to play as he still had the IV in his good hand.

We are incredibly lucky to be surrounded by a great team of people with the CP Health team, our private paed and physio, not to mention his team at school.  I’m really happy with the people Moo has in his life.  I know that they all care about him and don’t see him as his disability.  I think that this would have been much harder if we didn’t feel so supported by all of them.

Moo was home Saturday.  And he has gone from strength to strength.

So, for those of you wondering about the ITB or have it in your child’s future – these are my thoughts – going in, I thought that if the only thing that happened was that Moo would sleep better, then I would be bitterly disappointed.

You don’t realise how much you miss something until you see it again.

Yes, he sleeps through the night and it is blissful and if this was the only benefit then I wouldn’t be disappointed.  It is still strange that we put him down at night time and the next thing I know, I’m waking at 5:30am wondering how I got here without the 3 – 4 flips during the night.

We are on the slow process of increasing the dose.  He is about at a quarter of the dose that he is expected to receive eventually.  His legs are lose but not floppy.  It hasn’t gotten rid of all the tone yet and Moo has said that he can’t feel his legs.  He now has to relearn how to move because previously his movement was from tone.  But he will get there.  He has said that he likes how his legs feel but he doesn’t necessarily like the pump.  His skin is still stretching over the pump site and it is a strange feeling for him.

Last night he rolled onto his side apparently effortless. He moves differently.  It’s hard to describe it but it is nice to see.

He still hasn’t toilet trained and somehow, his nappies now don’t leak.  This is a great plus.  Not so much washing!

I’m trying to keep my goals realistic.  Not to get excited too much.  But it is exciting.  Very, very exciting  . . .

This subject is beginning to feel like I am being repetitive.

Yesterday, hubby and I decided to have a family day at the Broadwater, in particular so that Moo could go for a ride on the jetski before his operation on Tuesday.

Hubby went down the boat ramp and rode around to the Broadwater, while I drove the van with the kids and chair.

Of course, all the accessible parks were taken by hatchbacks with those annoying red placards.  I drove around for ages trying to work out what I was going to do.  While having the van modified makes life so much easier, it does restricts parking spots.

Eventually I saw a ramp that had a space in front of it where I could park and then unload for Moo to get to the park.  I had to do a u-turn and unfortunately, while I was doing it – another more nimble vehicle did the same thing and parked in the spot.

There was 20 odd metres in front of the vehicle where it could park so I wound down my window, excused myself and explained my problem.  The older gentleman reluctantly agreed to move his vehicle forward.  He hoped in and moved 2 metres forward.  Even with the front of my van 2cm away from his rear, I was still illegally parked (in front of the yellow lines protecting ramp access).  I tried to explain to him that I needed 3 metres behind me in order to get down the lift and access the ramp but was told by him that I had plenty of room.  Realising that I just wasn’t going to win, I cut my losses and drove off to find another spot.

Later I had to unfortunately walk past these people to get to hubby who was wondering where we were.  His wife approached me and told me that maybe if I wasn’t so rude, people would be happy to co-operate with my request.  This was just the icing on the cake.  I was incredibly polite.  Instead of getting into an argument and telling her husband what I truly thought of him, I drove away.  I told her that her husband was the rude one and that it took very little to be kind to people.  She walked off to her husband saying “your right, she’s definitely got a screw loose”.

I did have a bit of a cry.  I’m a bit stressed at the moment.

The good news is that Moo and the boys ended up having a fun time.

Smiles

Cheeky duo

Jet ski fun

So, Moo is due to have ITB surgery tomorrow.  I’m nervous.  So is he.  He wanted to know this morning if the surgeon was fully qualified to do the surgery.

We will be in hospital for a week.  The pump doesn’t get turned on until Wednesday and then the dose has to be built up.  I let you know how we go if I can.

As I didn’t have to go to court yesterday or see clients, I went to work in a pair of jeans and boob tube singlet.  We are all on Macs, so I rang home via facetime to Moo’s ipad.  (As a side-note, I love Apple)

Half way through the conversation with the boys, I am asked by Master C -

“Mummy, do you have any clothes on?”

I panned down so that they could see my shirt.  They were all very relieved to find out I wasn’t sitting in the office naked.

***

Moo asked me the other night what I was going to look like when he was older.  I told him that I would look the same and that I would just have more wrinkles around my eyes and mouth.

He was happy with that answer.

He was afraid that he wasn’t going to be able to recognise me.

???????????

Moo – birth to present